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Milligan, James, Joseph Lee, Allison Harrison, and Kathleen MacGregor. "Poster (Clinical/Best Practice Implementation) ID 2004605." Topics in Spinal Cord Injury Rehabilitation 29, suppl (September 1, 2023): 199. http://dx.doi.org/10.46292/sci23-2004605s.
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Background/Objectives The Centre for Family Medicine Mobility Clinic strives to provide high quality primary care to persons living with spinal cord injury or other health conditions that affect mobility. The Mobility Clinic Resource Abilities Council (MC RAC) was established to serve in an advisory capacity, making recommendations on matters that impact the experience of patients with physical disabilities and their support persons at the Mobility Clinic. Objectives MC RAC provides feedback on, and ideas for initiatives and programs that support and enhance the model of person-centred care. It also advances collaborative patient engagement and person-centred care principles and practices within primary care for persons with physical disabilities Methods/Overview Members include individuals with lived experience with physical disability, their support persons, and Mobility Clinic staff. The council was established August 2022 and meets virtually once per month for approximately 90 minutes. Results MC RAC has successfully met nine times and has provided feedback on the following topics: Breast & Cervical Cancer screening Initiative for People with Physical Disabilities, Mobility Clinic website development, building pathways for advocacy with the KW4 OHT, Circulus Network webinar topics, Mobility Clinic organization and clinical flow. Feedback to be implemented into Mobility Clinic activities. Conclusions Patient and support persons involvement in decision-making processes improve care experiences and contribute to better health outcomes for patients. We will continue to work and develop our patient advisory council to better support the Mobility Clinic’s patients and their support persons.
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Nadash, Pamela. "THE RAISE FAMILY CAREGIVER ADVISORY COUNCIL: STRATEGIES TO BOLSTER CAREGIVERS’ FINANCIAL SECURITY." Innovation in Aging 6, Supplement_1 (November 1, 2022): 284. http://dx.doi.org/10.1093/geroni/igac059.1130.
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Abstract The RAISE Family Caregiving Advisory Council, created under the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act (2018) has been tasked to support the Secretary of Health and Human Services in developing a national family caregiving strategy. The Council began by (in 2021) identifying five key Goals critical to supporting family caregivers, which were reported to Congress in the Council’s Initial Report; the next step (in 2022) was to identify how these Goals are to be operationalized via specific actions, as well as the stakeholders that needed to be involved. This symposium discusses Goal 4, which states that “Family caregivers’ lifetime financial and employment security is protected and enhanced,” a goal incorporating diverse components, including federal legislation (expanding FMLA, for example), enhancing workplace security for working caregivers, and ways to pay family caregivers for providing supportive services. The first paper, by Salom Teshale, PhD, will provide an overview of the Council’s work and the strategies that have been chosen to support the overall national strategy. The second paper, by Eileen J. Tell, MPH, will describe strategies to improve the ability of caregivers to remain and thrive in the workplace. Pamela Nadash, PhD, will report on the research that identified the expansion of self-directed programs to incorporate payment for family caregivers as key, and the fourth paper by Rani Snyder will conclude by identifying the research needed to move these efforts forward. Greg Link of the Administration for Community Living will act as discussant.
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Teshale, Salom. "THE RAISE COUNCIL'S WORK IN DEVELOPING A NATIONAL FAMILY CAREGIVING STRATEGY." Innovation in Aging 6, Supplement_1 (November 1, 2022): 285. http://dx.doi.org/10.1093/geroni/igac059.1133.
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Abstract Since 2019, the RAISE Family Caregiver Advisory Council (FCAC) has met regularly to carry out its work of developing a national family caregiving strategy. This strategy incorporates five goals to support family caregivers, and key actions that a range of stakeholders can carry out centered around these goals. This overview will describe the RAISE FCAC’s work in developing the national family caregiving strategy, and highlight the development of recommendations and key actions to support the fourth goal, “Family caregivers’ lifetime financial and employment security is protected and enhanced.” This goal’s recommendations include supporting caregivers through flexible workplace policies; supporting affordable long-term services and supports; supporting financial education and planning; and reducing overall negative financial impacts of caregiving short and long-term.
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LYNCH, GORDON. "The Church of England Advisory Council of Empire Settlement and Post-War Child Migration to Australia." Journal of Ecclesiastical History 71, no. 4 (October 2020): 798–826. http://dx.doi.org/10.1017/s0022046920000081.
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Between 1947 and 1965, 408 British children were sent to Australia under the auspices of the Church of England Advisory Council of Empire Settlement and its successor bodies. Situating this work in wider policy contexts, this article examines how the council involved itself in this work with support from some senior clergy and laity despite being poorly resourced to do so. Noting the council's failure to maintain standards expected of this work by the Home Office and child-care professionals, the article considers factors underlying this which both reflected wider tensions over child migration in the post-war period as well as those specific to the council.
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Tell, Eileen, and Pamela Nadash. "USING THE LTSS STATE SCORECARD TO MEASURE PROGRESS ON THE 2022 NATIONAL STRATEGY TO SUPPORT FAMILY CAREGIVERS." Innovation in Aging 7, Supplement_1 (December 1, 2023): 500–501. http://dx.doi.org/10.1093/geroni/igad104.1645.
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Abstract Through the Recognize, Assist, Include, Support, & Engage (RAISE) Family Caregivers Act of 2018, the RAISE Family Caregiver Advisory Council was created. Since 2019, the Council has directed in-depth information-gathering and research efforts to develop recommendations and an implementation plan for addressing our critical family caregiving crisis. The Council recently released the 2022 National Strategy to Support Family Caregivers, which highlights nearly 350 actions the federal government will take to support family caregivers in the coming year and more than 150 actions that can be adopted at other levels of government and across the private sector to build a system to support family caregivers. Integrating measures of improvement with regard to family caregiver support, across the domains identified in the National Strategy into the LTSS State Scorecard will provide a tool by which progress toward the RAISE goals can be measured. Currently, the Scorecard focuses on indicators specific to Supporting Working Family Caregivers. While these are critical, our research team has identified at least 10 additional indicators that could be included and that would address other caregiver support domains such as adequacy of direct care workforce, integration of family caregivers into care plans, direct pay to family caregivers, and more. In this session we will identify the indicators, explain how they relate to RAISE goals and discuss methods for including them in the Scorecard.
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Tell, Eileen. "FEDERAL ACTIONS TO SUPPORT FAMILY CAREGIVERS UNDER THE BIDEN ADMINISTRATION." Innovation in Aging 6, Supplement_1 (November 1, 2022): 36. http://dx.doi.org/10.1093/geroni/igac059.138.
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Abstract Family caregivers are the glue holding together the delivery and financing of long-term care. Replacing family care with paid care would cost roughly $470 billion each year. But family caregivers are struggling. They face many challenges – most notably the financial stress and the need for services and supports. Other challenges include lack of respite care, need for caregiver training, and lack of access to quality paid workforce. In order to address these challenges, Congress authorized the RAISE Family Caregiving Advisory Council. The RAISE (Recognize, Assist, Include, Support and Engage) Family Caregivers Act directs the Secretary of Health and Human Services to develop a national family caregiver strategy. This session presents the findings of two years of focus groups and interviews with family caregivers and hundreds of stakeholder organizations that support them, providing concrete input to the Biden administration on how to deliver on the broad objectives of the RAISE Act.
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Fox-Grage, Wendy. "Efforts by the National Academy for State Health Policy." Innovation in Aging 5, Supplement_1 (December 1, 2021): 177. http://dx.doi.org/10.1093/geroni/igab046.674.
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Abstract The National Academy for State Health Policy hosts both the RAISE Act Family Caregiving Resource and Dissemination Center and the Hub for State Strategies to Build and Support Palliative Care, with generous funding from The John A. Hartford Foundation. The value of supporting individuals with serious illness and complex conditions as well as their family caregivers through telehealth, care management, advance care planning, and other added family caregiver supports has been especially evident during the COVID-19 pandemic. Policymakers are now grappling with how to restructure hard-hit health care and long-term services and supports systems to better support these individuals and their family caregivers. The State Hub provides concrete resources for states working to implement and expand high-quality palliative care, and the RAISE Center is assisting the Family Caregiving Advisory Council with creating the country’s first national Family Caregiver Strategy.
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Pawloski, Jacob, Lisa Scarpace, Nestelynn Gay, Hassan Fadel, Rachel Hunt, Sameah Haider, Adam Robin, et al. "INNV-14. UTILIZATION OF A PATIENT FAMILY ADVISORY COUNCIL TO ADVANCE PATIENT-CENTERED CARE OF BRAIN TUMOR PATIENTS." Neuro-Oncology 22, Supplement_2 (November 2020): ii119. http://dx.doi.org/10.1093/neuonc/noaa215.497.
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Abstract INTRODUCTION Developing and advancing patient-centered care within neuro-oncology is an essential element of any tertiary brain tumor center. Patient-centered care of neuro-oncology patients requires a holistic approach that integrates oncologic treatment with social and psychological support. OBJECTIVE The aim of this study is to evaluate how a Patient Family Advisory Council can be created within an existing brain tumor center and utilized to improve patient-centered care. METHODS Current patients and caregivers were recruited by brain tumor staff to participate in monthly meetings. All participants underwent screening and training by our Patient Education Research Center team. Discussions focused on current and future brain tumor center initiatives, and participants were encouraged to give feedback from the patient perspective. New ideas to improve the patient experience were solicited. RESULTS A total of 15 participants (female = 57%) were recruited, including 10 with grade 3 or higher brain tumors. Monthly meetings, in-person or virtual, were held for two years. Utilizing participant feedback, the group updated our 80-page patient handbook that contained a variety of patient-caregiver focused resources. Participants also provided feedback on other brain tumor center initiatives such as development of a magnet featuring key phone numbers, an easily accessible website URL for emergencies, and numerous updates to the external website. Additional discussions involved development of neuro-oncology care pathways as we move to a stand-alone cancer center facility and initiation of OncoSTAT and palliative services in this population. CONCLUSION Brain tumor patients require a comprehensive oncologic treatment team as well as a wide variety of support services. A Patient Family Advisory Council is an effective method of advancing patient-centered care and a step toward improving the neuro-oncology patient experience.
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Braslow, Judith B., and Joan A. Snyder. "Trauma System Development and Future Directions." Prehospital and Disaster Medicine 8, no. 2 (June 1993): 111–14. http://dx.doi.org/10.1017/s1049023x00040152.
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AbstractTraumatic injury, both unintentional and intentional, is a serious public health problem. Trauma care systems play a significant role in reducing mortality, morbidity, and disability due to injuries. However, barriers to the provision of prompt and appropriate emergency medical services still exist in many areas of the United States. Title XII of the Public Health Service Act provides for programs in support of trauma care planning and system development by states and localities. This legislation includes provisions for: 1) grants to state agencies to modify the trauma care component of the state Emergency Medical Services (EMS) plan; 2) grants to improve the quality and availability of trauma care in rural areas; 3) development of a Model Trauma Care System Plan for states to use as a guide in trauma system development; and 4) the establishment of a National Advisory Council on Trauma Care Systems.
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Nadash, Pamela, Eileen Tell, Shan Qu, and Maryssa Pallis. "WHAT MATTERS MOST? REACTIONS TO THE RAISE ADVISORY COUNCIL’S NATIONAL STRATEGY TO SUPPORT FAMILY CAREGIVERS." Innovation in Aging 7, Supplement_1 (December 1, 2023): 56. http://dx.doi.org/10.1093/geroni/igad104.0179.
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Abstract This presentation reports on feedback from advocates and researchers, those working in organizations serving family caregivers, and family caregivers themselves regarding the 2022 National Strategy to Support Family Caregivers. The Strategy was issued by the RAISE Family Caregiving Advisory Council, created under the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act (2018). A Request for Information (RFI) published in the Federal Register garnered nearly 600 responses from a wide range of individuals and organizations, providing feedback about top priorities for action, topics or populations that were not adequately addressed, and recommendations for actions that could help meet stated objectives; these comments will prove critical in implementing the National Strategy, as well as in updating and revising it. This presentation sets the progress of the National Strategy in context, reports on the RFI analysis, and describes next steps, highlighting key areas of focus for the federal government, states, and other entities. Priorities included expanding the direct care workforce and increasing access to caregiver training and supports, particularly respite. Other top comments pertained to financial and workplace security for family caregivers - encouraging caregiver-friendly workplaces, paying family members to provide care, and strengthening the Family and Medical Leave Act. Respondents broadly endorsed the Strategy and noted the need for campaigns promoting greater awareness of family caregiving. The findings suggest that there is strong consensus among caregiver advocates regarding the most critical areas for action and the most favored strategies to achieve caregivers’ priority goals.
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Menne, Heather, Natalie Mulmule, Angela Gasdaska, Emily Costilow, and Kristen Robinson. "National Family Caregiver Support Program Participants' Recommendations to Boost Caregiver Supports." Innovation in Aging 5, Supplement_1 (December 1, 2021): 945–46. http://dx.doi.org/10.1093/geroni/igab046.3416.
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Abstract For more than 20 years, family caregivers have been supported through the National Family Caregiver Support Program (NFCSP) of the Older Americans Act (Title IIIE). The NFCSP provides information to caregivers about available services; assistance in gaining access to services; counseling, support groups and caregiver training; respite care; and supplemental services. In the 2019 National Survey of Older Americans Act Participants, 1,909 NFCSP caregivers were asked “What recommendations do you have for improving the service?” The resulting 748 open-ended responses were thematically coded. The thematic analysis yielded six major themes: Additional Resources, Staffing, Communication, Care Coordination, Quality of Services, and Eligibility. Sub-themes were identified for Additional Resources and Staffing. The most common sub-themes for Additional Resources were requests for more help or services (e.g., grocery shopping), increased funding or financial assistance, and more service hours (e.g., overnight or holiday care). The most common sub-theme for Staffing was the need for consistent staffing due to high turnover of staff. Chi-Squared tests and Fisher’s Exact tests indicated that there were no significant associations between any of the recommendation themes and the gender of the caregiver, employment status of the caregiver, or whether the care recipient has Alzheimer’s or dementia. Many of the themes align with results from a recent RAISE Family Caregiving Advisory Council Report. Recommendations from both sets of findings indicate ways that programs, services, and policies can be enhanced to support the needs of care recipients and caregivers.
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Santana, Maria-Jose, Sandra Zelinsky, Sadia Ahmed, Chelsea Doktorchik, Matthew James, Stephen Wilton, Hude Quan, Nicolas Fernandez, Todd Anderson, and Sonia Butalia. "Patients, clinicians and researchers working together to improve cardiovascular health: a qualitative study of barriers and priorities for patient-oriented research." BMJ Open 10, no. 2 (February 2020): e031187. http://dx.doi.org/10.1136/bmjopen-2019-031187.
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ObjectivesThe overall goal of this study is to identify priorities for cardiovascular (CV) health research that are important to patients and clinician-researchers. We brought together a group of CV patients and clinician-researchers new to patient-oriented research (POR), to build a multidisciplinary POR team and form an advisory committee for the Libin Cardiovascular Institute of Alberta.DesignThis qualitative POR used a participatory health research paradigm to work with participants in eliciting their priorities. Therefore, participants were involved in priority setting, and analysis of findings. Participants also developed a plan for continued engagement to support POR in CV health research.SettingLibin Cardiovascular Institute of Alberta, Cumming School of Medicine, University of Calgary, Canada.ParticipantsA total of 23 participants, including patients and family caregivers (n=12) and clinician-researchers (n=11).ResultsParticipants identified barriers and facilitators to POR in CV health (lack of awareness of POR and poor understanding on the role of patients) and 10 research priorities for improving CV health. The CV health research priorities include: (1) CV disease prediction and prevention, (2) access to CV care, (3) communication with providers, (4) use of eHealth technology, (5) patient experiences in healthcare, (6) patient engagement, (7) transitions and continuity of CV care, (8) integrated CV care, (9) development of structures for patient-to-patient support and (10) research on rare heart diseases.ConclusionsIn this study, research priorities were identified by patients and clinician-researchers working together to improve CV health. Future research programme and projects will be developed to address these priorities. A key output of this study is the creation of the patient advisory council that will provide support and will work with clinician-researchers to improve CV health.
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Doucet, Shelley, Janet A. Curran, Sydney Breneol, Alison Luke, Emilie Dionne, Rima Azar, Amy E. Reid, Shelley McKibbon, Amanda R. Horsman, and Krystal Binns. "Programmes to support transitions in care for children and youth with complex care needs and their families: a scoping review protocol." BMJ Open 10, no. 6 (June 2020): e033978. http://dx.doi.org/10.1136/bmjopen-2019-033978.
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IntroductionChildren and youth with complex care needs (CCNs) and their families experience many care transitions over their lifespan and are consequently vulnerable to the discontinuity or gaps in care that can occur during these transitions. Transitional care programmes, broadly defined as one or more intervention(s) or service(s) that aim to improve continuity of care, are increasingly being developed to address transitions in care for children and youth with CCNs. However, this literature has not yet been systematically examined at a comprehensive level. The purpose of this scoping review is to map the range of programmes that support transitions in care for children and youth with CCNs and their families during two phases of their lifespan: (1) up to the age of 19 years (not including their transition to adult healthcare) and (2) when transitioning from paediatric to adult healthcare.Methods and analysisThe Joanna Briggs Institute methodology for scoping reviews (ScR) will be used for the proposed scoping review. ScR are a type of knowledge synthesis that are useful for addressing exploratory research questions that aim to map key concepts and types of evidence on a topic and can be used to organise what is known about the phenomena. A preliminary search of PubMed was conducted in December 2018.Ethics and disseminationEthical approval is not required where this study is a review of the published and publicly reported literature. The research team’s advisory council will develop a research dissemination strategy with goals, target audiences, expertise/leadership, resources and deadlines to maximise project outputs. The end-of-grant activities will be used to raise awareness, promote action and inform future research, policy and practice on this topic.
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Hidalgo-Mazzei, Diego, Michael Berk, Andrea Cipriani, Anthony J. Cleare, Arianna Di Florio, Daniel Dietch, John R. Geddes, et al. "Treatment-resistant and multi-therapy-resistant criteria for bipolar depression: consensus definition." British Journal of Psychiatry 214, no. 1 (December 6, 2018): 27–35. http://dx.doi.org/10.1192/bjp.2018.257.
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BackgroundMost people with bipolar disorder spend a significant percentage of their lifetime experiencing either subsyndromal depressive symptoms or major depressive episodes, which contribute greatly to the high levels of disability and mortality associated with the disorder. Despite the importance of bipolar depression, there are only a small number of recognised treatment options available. Consecutive treatment failures can quickly exhaust these options leading to treatment-resistant bipolar depression (TRBD). Remarkably few studies have evaluated TRBD and those available lack a comprehensive definition of multi-therapy-resistant bipolar depression (MTRBD).AimsTo reach consensus regarding threshold definitions criteria for TRBD and MTRBD.MethodBased on the evidence of standard treatments available in the latest bipolar disorder treatment guidelines, TRBD and MTRBD criteria were agreed by a representative panel of bipolar disorder experts using a modified Delphi method.ResultsTRBD criteria in bipolar depression was defined as failure to reach sustained symptomatic remission for 8 consecutive weeks after two different treatment trials, at adequate therapeutic doses, with at least two recommended monotherapy treatments or at least one monotherapy treatment and another combination treatment. MTRBD included the same initial definition as TRBD, with the addition of failure of at least one trial with an antidepressant, a psychological treatment and a course of electroconvulsive therapy.ConclusionsThe proposed TRBD and MTRBD criteria may provide an important signpost to help clinicians, researchers and stakeholders in judging how and when to consider new non-standard treatments. However, some challenging diagnostic and therapeutic issues were identified in the consensus process that need further evaluation and research.Declaration of interestIn the past 3 years, M.B. has received grant/research support from the NIH, Cooperative Research Centre, Simons Autism Foundation, Cancer Council of Victoria, Stanley Medical Research Foundation, MBF, NHMRC, Beyond Blue, Rotary Health, Geelong Medical Research Foundation, Bristol Myers Squibb, Eli Lilly, Glaxo SmithKline, Meat and Livestock Board, Organon, Novartis, Mayne Pharma, Servier, Woolworths, Avant and the Harry Windsor Foundation, has been a speaker for Astra Zeneca, Bristol Myers Squibb, Eli Lilly, Glaxo SmithKline, Janssen Cilag, Lundbeck, Merck, Pfizer, Sanofi Synthelabo, Servier, Solvay and Wyeth and served as a consultant to Allergan, Astra Zeneca, Bioadvantex, Bionomics, Collaborative Medicinal Development, Eli Lilly, Grunbiotics, Glaxo SmithKline, Janssen Cilag, LivaNova, Lundbeck, Merck, Mylan, Otsuka, Pfizer and Servier. A.J.C. has in the past 3 years received honoraria for speaking from Astra Zeneca and Lundbeck, honoraria for consulting from Allergan, Janssen, Lundbeck and LivaNova and research grant support from Lundbeck. G.M.G. holds shares in P1Vital and has served as consultant, advisor or CME speaker for Allergan, Angelini, Compass pathways, MSD, Lundbeck, Otsuka, Takeda, Medscape, Minervra, P1Vital, Pfizer, Servier, Shire and Sun Pharma. J.G. has received research funding from National Institute for Health Research, Medical Research Council, Stanley Medical Research Institute and Wellcome. H.G. received grants/research support, consulting fees or honoraria from Gedeon Richter, Genericon, Janssen Cilag, Lundbeck, Otsuka, Pfizer and Servier. R.H.M.-W. has received support for research, expenses to attend conferences and fees for lecturing and consultancy work (including attending advisory boards) from various pharmaceutical companies including Astra Zeneca, Cyberonics, Eli Lilly, Janssen, Liva Nova, Lundbeck, MyTomorrows, Otsuka, Pfizer, Roche, Servier, SPIMACO and Sunovion. R.M. has received research support from Big White Wall, Electromedical Products, Johnson and Johnson, Magstim and P1Vital. S.N. received honoraria from Lundbeck, Jensen and Otsuka. J.C.S. has received funds for research from Alkermes, Pfizer, Allergan, J&J, BMS and been a speaker or consultant for Astellas, Abbott, Sunovion, Sanofi. S.W has, within the past 3 years, attended advisory boards for Sunovion and LivaNova and has undertaken paid lectures for Lundbeck. D.J.S. has received honoraria from Lundbeck. T.S. has reported grants from Pathway Genomics, Stanley Medical Research Institute and Palo Alto Health Sciences; consulting fees from Sunovion Pharamaceuticals Inc.; honoraria from Medscape Education, Global Medical Education and CMEology; and royalties from Jones and Bartlett, UpToDate and Hogrefe Publishing. S.P. has served as a consultant or speaker for Janssen, and Sunovion. P.T. has received consultancy fees as an advisory board member from the following companies: Galen Limited, Sunovion Pharmaceuticals Europe Ltd, myTomorrows and LivaNova. E.V. received grants/ research support, consulting fees or honoraria from Abbott, AB-Biotics, Allergan, Angelini, Dainippon Sumitomo, Ferrer, Gedeon Richter, Janssen, Lundbeck, Otsuka and Sunovion. L.N.Y. has received grants/research support, consulting fees or honoraria from Allergan, Alkermes, Dainippon Sumitomo, Janssen, Lundbeck, Otsuka, Sanofi, Servier, Sunovion, Teva and Valeant. A.H.Y. has undertaken paid lectures and advisory boards for all major pharmaceutical companies with drugs used in affective and related disorders and LivaNova. He has also previously received funding for investigator-initiated studies from AstraZeneca, Eli Lilly, Lundbeck and Wyeth. P.R.A.S. has received research funding support from Corcept Therapeutics Inc. Corcept Therapeutics Inc fully funded attendance at their internal conference in California USA and all related expenses. He has received grant funding from the Medical Research Council UK for a collaborative study with Janssen Research and Development LLC. Janssen Research and Development LLC are providing non-financial contributions to support this study. P.R.A.S. has received a presentation fee from Indivior and an advisory board fee from LivaNova.
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Martin-Plank, Lori, Mary P. Davis, Deborah K. Williams, Jennifer T. May, Evangeline M. Ortiz-Dowling, Annabelle Núñez, Zuryanette Reyes, Beverly J. Heasley, and Janice D. Crist. "Graphic Novela: Mexican American Families’ Use of Community Services for Older Adults." Clinical Nursing Research 31, no. 4 (October 31, 2021): 624–31. http://dx.doi.org/10.1177/10547738211057006.
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Knowledge gaps exist about how to help Mexican American (MA) families seek assistance when their capacity to assist older family members is challenged. MA families may resist confronting unpleasant but real situations with the older adult, for example, the need to access long term support services (LTSS), because of cultural and structural barriers. The purpose was to describe stakeholders’ reactions to a culturally focused graphic novela created in partnership with a community advisory council. Qualitative description with content analysis of a focus group’s reactions to the graphic novela was used. Results included positive reactions as well as suggestions for improvement and dissemination. Graphic novelas can be an effective medium for modeling conversations about older adults’ needing additional care, and demonstrating how to identify and access available LTSS or other services. Included is a description of the researchers’ process of partnering with diverse stakeholders, which is essential for creating new solutions.
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Williams, Brent C., Gregg Warshaw, Anne Rebecca Fabiny, Nancy Lundebjerg, MPA, Annette Medina-Walpole, Karen Sauvigne, Joanne G. Schwartzberg, and Rosanne M. Leipzig. "Medicine in the 21st Century: Recommended Essential Geriatrics Competencies for Internal Medicine and Family Medicine Residents." Journal of Graduate Medical Education 2, no. 3 (September 1, 2010): 373–83. http://dx.doi.org/10.4300/jgme-d-10-00065.1.
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Abstract Background Physician workforce projections by the Institute of Medicine require enhanced training in geriatrics for all primary care and subspecialty physicians. Defining essential geriatrics competencies for internal medicine and family medicine residents would improve training for primary care and subspecialty physicians. The objectives of this study were to (1) define essential geriatrics competencies common to internal medicine and family medicine residents that build on established national geriatrics competencies for medical students, are feasible within current residency programs, are assessable, and address the Accreditation Council for Graduate Medical Education competencies; and (2) involve key stakeholder organizations in their development and implementation. Methods Initial candidate competencies were defined through small group meetings and a survey of more than 100 experts, followed by detailed item review by 26 program directors and residency clinical educators from key professional organizations. Throughout, an 8-member working group made revisions to maintain consistency and compatibility among the competencies. Support and participation by key stakeholder organizations were secured throughout the project. Results The process identified 26 competencies in 7 domains: Medication Management; Cognitive, Affective, and Behavioral Health; Complex or Chronic Illness(es) in Older Adults; Palliative and End-of-Life Care; Hospital Patient Safety; Transitions of Care; and Ambulatory Care. The competencies map directly onto the medical student geriatric competencies and the 6 Accreditation Council for Graduate Medical Education Competencies. Conclusions Through a consensus-building process that included leadership and members of key stakeholder organizations, a concise set of essential geriatrics competencies for internal medicine and family medicine residencies has been developed. These competencies are well aligned with concerns for residency training raised in a recent Medicare Payment Advisory Commission report to Congress. Work is underway through stakeholder organizations to disseminate and assess the competencies among internal medicine and family medicine residency programs.
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Amador, Sarah, Claire Goodman, Louise Robinson, and Elizabeth L. Sampson. "UK end-of-life care services in dementia, initiatives and sustainability: results of a national online survey." BMJ Supportive & Palliative Care 8, no. 4 (October 14, 2016): 424–27. http://dx.doi.org/10.1136/bmjspcare-2016-001138.
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BackgroundPeople living and dying with non-cancer diagnoses, including dementia, have poorer access to generalist and specialist palliative care than people with cancer, and experience worse outcomes in terms of pain and symptom control, and quality and experience of care. In the UK, the National Council for Palliative Care (NCPC) ran a national survey of services for end-of-life care for people with dementia (2008) in which 16 services were identified, and reported on case studies and examples of good practice. We updated the NCPC survey to review progress in previously identified services, identify factors that lead to sustainable services and identify new initiatives in this area of care.MethodsAn online survey was developed and piloted before use. Initiatives were contacted via targeted (N=63) and open call invitations. The survey was made up of 5 sections. Quantitative data were analysed using descriptive statistics.Results15 services responded. They engaged in a wide range of activities predominately providing direct care (80%) and workforce development/advisory or educational activities (87%). Results suggest that sustainability of services is reliant on clinicians with a leadership role and wider system support through funding mechanisms and a minimum level of integration within normal service provision.ConclusionsRecent initiatives are largely built on the expertise of the nursing profession (with or without input from medical consultants), and driven mainly by the charity and hospice sector. This has generated a potential new model of care provision in end of life dementia care, ‘Hospice-enabled Dementia Care’.
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Reinhard, Susan. "THE ROLE OF THE LTSS SCORECARD IN PROMOTING STATE ACCOUNTABILITY FOR CAREGIVER POLICY." Innovation in Aging 7, Supplement_1 (December 1, 2023): 499–500. http://dx.doi.org/10.1093/geroni/igad104.1642.
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Abstract In 2011, the AARP produced its first LTSS Scorecard in “Raising Expectations: A State Scorecard on Long-Term Services and Supports for Older Adults, People with Physical Disabilities, and Family Caregivers”. This presentation discusses the history, background, and goals of the Scorecard, which examines four key dimensions of state LTSS system performance: affordability and access; choice of setting and provider; quality of life and quality of care; and support for family caregivers. This presentation focuses on the extent to which support for family caregivers was a focus of that first report and how that focus has changed over time. In addition, the presentation will consider the extent to which the Scorecard has proved an effective policy tool in holding states accountable for progress in supporting family caregivers. Has the Scorecard achieved its stated goal to “to spark conversations, galvanize broad-based coalitions, and focus stakeholders’ attention on the factors that most directly impact consumers and their families”? What has AARP learned through its experience of developing and administering the Scorecard, and what changes are being considered with respect to the dimensions pertaining to family caregivers? The presentation will conclude by noting synergies with the work of the RAISE Family Caregiver Advisory Council and the priorities indicated in its National Strategy to Support Family Caregivers.
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Burns, Diane, Vicky Simanovski, Victoria Karuna Hagens, and Garth Matheson. "Reducing the impact of distance on hematopoietic cell therapy patients." Journal of Clinical Oncology 36, no. 30_suppl (October 20, 2018): 74. http://dx.doi.org/10.1200/jco.2018.36.30_suppl.74.
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74 Background: Hematopoietic Cell Therapy (HCT) patients experience unique travel challenges and high out-of-pocket costs due to the highly specialized care required. We conducted a mixed methods study to understand current patient support programs in Ontario and other jurisdictions and a cost analysis to inform the development of recommendations to reduce the impact of remoteness on HCT patients and caregivers. Methods: Qualitative information on patient transportation and accommodation supports was gathered through informal and structured input from fourteen Ontario Regional Cancer Program Directors, Hematologists, Patient and Family Advisory Council and Aboriginal Navigators. An environmental scan of medical travel assistance programs within Ontario and in other jurisdictions was performed. A scoping literature review was conducted of published studies focused on inequities in receipt of cancer care in countries with Universal Health care. HCT patient travel patterns to each of the transplant facilities in Ontario were obtained from analysis of Cancer Care Ontario data holdings. Results: We concluded that travel assistance for cancer patients in Ontario varies considerably across the province, and that Ontario lags behind other jurisdictions in Canada and internationally. The scoping literature review revealed that patients who live far from specialist centres, for some diseases, have later stage at diagnosis, less timely access to specialist care, poorer outcomes, lower patient experience scores, and make treatment decisions based on distance. From the analysis of travel patterns for HCT patients, provincially 4 – 79% of patients travel for HCT based on their location (see table below). Conclusions: This study highlights the need to better support HCT patients in Ontario. As a result, a proposal to support accommodations for HCT patients was developed and approved by the Ontario government for implementation in 2018/19.[Table: see text]
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Ramírez, A. Susana, Stephanie M. Mohl, Christin Veasley, and Sameer A. Sheth. "The Communication of Scientific Information to Scientists, Clinicians, and the Public." Neurology 101, no. 7 (August 15, 2023): S67—S74. http://dx.doi.org/10.1212/wnl.0000000000207565.
Full textAbstract:
Optimizing health care decisions relies critically on the availability of health-related information appropriate to the specific needs and circumstances of the individual. Abundant research has demonstrated that information relevant to health care decision-making reflects disparities along multiple axes of sex, race, socioeconomic status, geography, sexual orientation, and other factors. Compounding the problem is that mechanisms of access to information themselves, increasingly recognized as part of the social determinants of health, can perpetuate and even exacerbate these disparities. Critical to achieving neurologic health equity is the application of evidence-based strategies to inform the effective and efficient communication of information that can influence patients' behaviors, enhance community trust in the scientific enterprise, and shape health systems and policies. In 2020, as part of a strategic planning initiative, the National Institute of Neurological Disorders and Stroke (NINDS) charged its Advisory Council to form a working group of experts to provide recommendations for reducing health disparities. Here, we report our subgroup's findings, which focused on the role of communication in addressing neurologic disparities and inequities to achieve health equity. We find a need for incentivizing and supporting the application of communication science across the spectrum of neurologic health research. We present recommendations for NINDS and individual investigators to support communication activities that advance neurologic health equity.
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Fryefield, David C., Roberta Kafora, Lori Bradshaw-Hucko, Chris Tribble, Terry Jensen, Tom Chentnik, and Roy Beveridge. "Community oncology care delivery staffing model." Journal of Clinical Oncology 30, no. 34_suppl (December 1, 2012): 87. http://dx.doi.org/10.1200/jco.2012.30.34_suppl.87.
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87 Background: In 2010, the US Oncology Network’s Clinical Advisory Council (CAC), a practice-based clinical leadership team, reviewed the care delivery process at 5 pilot community oncology clinics to determine how licensed and unlicensed clinical resources were used. The Lean Six Sigma methodology, which employs statistical analysis within a structured approach to problem-solving, was used to understand the required clinical activities of the practices within 3 primary areas. The objective of this pilot was to ensure patients receive timely, effective treatment from qualified personal in a cost-efficient model. Methods: A team led by a certified Master Black Belt studied tasks performed by licensed vs. non-licensed staff in the areas of physician services, treatment services and triage services at each practice. Based on the findings, tasks were realigned to maintain quality of care but to deliver care more efficiently. Results: Care Delivery processes comprised 95 tasks at baseline vs. 80 tasks in the redefined model. Within physician services, changes to workflow included rooming and clinic support (vitals, cleaning, and patient comfort) to be provided by Medical Assistants (MAs) instead of RN. RN duties were changed to MA supervision and tasks that require licensure. Changes to triage services included use of RNs to coordinate care and MAs for phone call screening, centralized triage (non-patient facing), and normal lab follow-up. Increased clarity of tasks and re-assignment of responsibilities reduced RN work load by 17% or 16.6 hours/day based on 120 patient visits. Each pilot site realized an annualized labor savings in excess of $100,000. This prospective, patient volume-based Care Delivery Staffing Model was adopted by the CAC as Network standard after completion of the pilot. Conclusions: Using Lean Six Sigma methods, the care delivery process was successfully re-designed such that clinical staff were re-aligned to better utilize each resource’s core competencies. Implementation of this care delivery model resulted in improved cost effectiveness while maintaining quality of care and also enabled prospective staff planning so that costs can be kept competitive in the future.
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Somers, John, and Lynn Wheeler. "A Blueprint for Collaborative Action to Build a Trauma-Informed School: A Case Study." Professional School Counseling 26, no. 1c (November 15, 2022): 2156759X2211346. http://dx.doi.org/10.1177/2156759x221134670.
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Analysis of multiple forms of data from a high-need K–8 charter school led to the hypothesis that increasing disciplinary disruptions and poor student academic achievement were the results of endemic student trauma. The principal, the lead school counselor, and an advisory council created a plan to explore and address behavioral and social/emotional issues, and wrote grants to sustain programming changes. The school achieved success in multiple areas, including: improving its comprehensive school counseling program using the ASCA National Model framework; benchmarking its practice with the ASCA School Counselor Professional Standards & Competencies; reducing noncounseling duties for school counselors and providing 80% direct and indirect services to students; reducing the school counselor-to-student ratio; restructuring student discipline policies through the implementation of school-wide trauma-informed care practices; and utilizing social/emotional learning and trauma-informed lessons in the classroom. This case study outlines how one school created multidisciplinary internal and community-based teams to support trauma-informed practices for students, teachers, staff, and families, while emphasizing school counselor–principal leadership to build social capital. The discussion includes a review of progress toward systemic change goals.
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Scientific Council, National. "Excessive stress disrupts the development of brain architecture." Journal of Children's Services 9, no. 2 (June 10, 2014): 143–53. http://dx.doi.org/10.1108/jcs-01-2014-0006.
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Purpose – Drawing on the scientific literature, the purpose of this paper is to elucidate the harmful effects of toxic stress on the developing brain. It explains how severe, chronic adversity during development, in the absence of responsive caregiving, can impair brain architecture. It also outlines policy implications for preventing or mitigating the effects of toxic stress in early childhood. Design/methodology/approach – The National Scientific Council on the Developing Child, based at the Center on the Developing Child at Harvard University, is a multidisciplinary, multiuniversity panel of scholars that seeks to bring science to bear on public decision making. Council members selected excessive stress as a topic meriting translation for a general audience and conducted extensive peer review in drafting the paper's key scientific concepts. Findings – The paper discusses how healthy development can be derailed by excessive or prolonged activation of the biological stress response systems and how that increases lifetime risk for certain behavioural and physiological disorders. It finds that supportive relationships with caregivers can help buffer the negative consequences of toxic stress. Social implications – The paper calls for improvements to family support programmes, mental health services, and the quality and availability of early care and education. Originality/value – This paper describes an original taxonomy of positive, tolerable, and toxic stress and demonstrates the need to translate scientific knowledge about the developing brain into actionable strategies for the prevention and treatment of the effects of adverse childhood experiences.
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Roziznanyi, Ye. "National and foreign experience in determining the legal status of guardianship bodies." Analytical and Comparative Jurisprudence, no. 1 (March 20, 2024): 229–33. http://dx.doi.org/10.24144/2788-6018.2024.01.39.
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In the scientific article, the author conducted a scientific study of the peculiarities of the legal status of guardianship and guardianship bodies in Ukraine and other countries. On the basis of the conducted research, the author came to the conclusion that guardianship and guardianship bodies are distinguished by various authorities - local bodies of state executive power and local self-government bodies, separate departments of these bodies, services for children, which function under local state administrations and local councils, and as well as advisory and advisory support bodies. At the same time, the scientific literature notes the inexpediency of such a wide list of guardianship and guardianship bodies and the need to empower these bodies only with services for children. In the family law doctrine, there is no unanimity regarding the definition of the powers of the guardianship and guardianship authorities, which relate to the protection of the rights and legitimate interests of the child; they are contained in special legislation, which, however, does not fully correspond to each other and provides for the presence of a number of bodies that do not actually function or carry out activities formally, without having the appropriate competence (commissions for the protection of children's rights, departments of local state administrations), or at the same time function two bodies that are subordinate to each other (local state administrations and services for children). In the family law doctrine, there is no certainty in the issue of recognition of guardianship bodies and care by subjects of family relations; some scientists attribute them to the subjects of administrative-procedural relations or to the participants of legal relations of a complex nature, which are partly family, while others distinguish them as subjects of family relations. Analogues of guardianship and guardianship bodies in the states of the European Union and candidate states for EU membership are various types of bodies, including quasi-judicial ones, which perform both the functions of appointing, approving or dismissing a guardian, as well as supervising the observance of the rights of the child by its guardian (in France these functions are divided between the "family council” and the "guardianship judge”). Also, these bodies make decisions in family disputes regarding determining a child's surname, establishing his origin, his upbringing and maintenance.
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Duncan, Alexander, Angela Kellum, Shilpa Jain, Skye Peltier, Helen Smith, David Cooper, and Hossam Saad. "Disease Burden in Patients with Glanzmann Thrombasthenia: Perspectives from the Glanzmann Thrombasthenia Patient/Caregiver Questionnaire." Blood 134, Supplement_1 (November 13, 2019): 3456. http://dx.doi.org/10.1182/blood-2019-128408.
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Introduction: Glanzmann thrombasthenia (GT) is a rare bleeding disorder (~1:1,000,000) caused by impaired function of platelet glycoprotein IIb/IIIa responsible for aggregation. This novel survey was designed to identify the burden of GT through better understanding of the management of the disorder and its psychosocial impact on patients and caregivers. Methods: Participants were recruited via a rare disease specialty recruiter from Comprehensive Health Education Services. Data were collected from January 31 through March 12, 2019, via a moderator-assisted online survey. On average, the survey was completed within 45 minutes. Information regarding demographics, diagnosis, treatment history, and quality of life was collected. Results: In total, 45 respondents (24 patients and 21 caregivers; 58% female) completed the survey. Many patients were born with significant bruising (76%) or bled extensively during circumcision (47%). As a result of their early symptoms, more than 50% of those surveyed were diagnosed prior to their first birthday. For others, the average time between experiencing initial symptoms and visiting a specialist was just over 1 year and to diagnosis was just over 2 years (average age, 2.6 years, range <1-38 years). Misdiagnosis with von Willebrand disease was common. Approximately 50% of patients experienced 1 bleed every day, and 13% reported over 500 bleeds per year; Most bleeds were skin bruises and mouth bleeds, but patients also reported joint/muscle and gastrointestinal bleeds. Only 24% of respondents reported being treated at a hemophilia treatment center; 71% reported visiting their hematologist regularly. The most common treatment for bleeds was antifibrinolytics (82%), followed by recombinant activated factor VII (rFVIIa; 42%). In addition, 73% reported receiving platelets and blood transfusions in the past year. Approximately 25% reported receiving more than 20 transfusions in their lifetime. Overall, 38% of patients reported having experienced refractoriness to platelets and 32% antibodies to platelets; notably, only these patients reported receiving treatment with rFVIIa. Many feared uncontrolled bleeding due to refractoriness or antibodies to platelets and stated that their health care providers (HCPs) were too quick to treat bleeds with platelets. Many female patients struggled to find a gynecologist with some knowledge of the management of menstruation, pregnancy, and childbirth in patients with GT; 11% of respondents reported menstrual bleeding that required hospitalization and/or emergency treatment. The majority (74%) of female patients reported taking hormonal contraceptives to prevent regular menstruation; some patients not taking hormones required monthly platelet transfusions. Fifty-eight percent of patients reported issues with excessive bleeding at school as children; 38% reported missing school days and 33% were bullied during childhood. In addition, 38% of adult patients and 24% of caregivers had missed work as a result of GT, and 21% of adult patients reported that their employer did not take their condition seriously. Many respondents (65%) were satisfied with the level of support they receive from their significant other, and 76% were satisfied with the level of support they receive from their friends. Conclusions: Many patients with GT are identified early in life owing to a severe phenotype, but diagnosis remains somewhat difficult. Patients with GT experience frequent bleeding episodes, commonly as bruises and nosebleeds, with 31% experiencing more than 100 bleeds per year. Additional support from outside the GT patient community is needed. Patients desire additional education for themselves and their HCPs, especially around menstruation, childbearing, and treatment options. Disclosures Duncan: Novo Nordisk Inc: Consultancy. Kellum:Novo Nordisk Inc: Membership on an entity's Board of Directors or advisory committees; Takeda: Membership on an entity's Board of Directors or advisory committees, Speakers Bureau. Jain:Bioverativ/Sanofi: Consultancy, Membership on an entity's Board of Directors or advisory committees; Novo Nordisk Inc: Consultancy, Membership on an entity's Board of Directors or advisory committees; Bayer: Consultancy, Membership on an entity's Board of Directors or advisory committees; CSL Behring: Consultancy, Membership on an entity's Board of Directors or advisory committees; Octapharma: Consultancy, Membership on an entity's Board of Directors or advisory committees; Takeda/Shire: Consultancy, Membership on an entity's Board of Directors or advisory committees; BPL: Consultancy, Membership on an entity's Board of Directors or advisory committees. Peltier:Novo Nordisk Inc: Membership on an entity's Board of Directors or advisory committees. Cooper:Novo Nordisk Inc.: Employment. Saad:Novo Nordisk Inc: Employment.
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Brown, Maria, Eugenia Siegler, Marz Albarran, John Wikiera, Angie Partap, Courtney Ahmed, Sheriden Beard, and Thomas Heslop. "CONSUMERS AND PROVIDERS ON THE NEEDS OF LONG-TERM SURVIVORS AND PEOPLE AGING WITH HIV IN NEW YORK STATE." Innovation in Aging 6, Supplement_1 (November 1, 2022): 163. http://dx.doi.org/10.1093/geroni/igac059.651.
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Abstract Objectives To document the practical needs, and develop quality initiatives to address those needs, of the growing population of long-term survivors (LTS) and older people with HIV (OPH) in New York State. Methods The HIV+ Aging/LTS/Perinatally Diagnosed Subcommittee of the NYS Quality of Care Consumer Advisory Council used community based participatory research methods to design a statewide survey based on categories identified in August 2020 virtual town halls with consumers and providers across New York. Syracuse University launched the survey, open to consumers aged 18 and over who were LTS or OPH, clinicians, and social services providers, in June 2021 using Qualtrics™. Participants chose the three most important barriers and recommendations for each category. Responses were characterized using basic descriptive statistics. Results Participants included 124 consumers from 26 counties, 20 clinicians, and 24 social service providers. Two thirds of participants were cisgender men (67%), 27% were African American, 80% identified as both LTS and OPH. On average, consumers were 58 years old, had been living with their HIV+ diagnosis for 27 years, and reported 4 additional conditions, most commonly depression (30%). LTS and OPH were concerned about clinical and financial needs, particularly coordination of clinical care, unmet housing needs, cultural representation in mental health services, and financial support of LTS and OPH. Implications: Community based participatory research can inform and stimulate changes in clinical care for LTS and OPH. Survey results are informing a plan for functional screening of OPH and LTS that can be performed by certified peer workers.
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Kornelsen, Jude, Andrew Kotaska, Pauline Waterfall, Louisa Willie, and Dawn Wilson. "Alienation and Resilience: The Dynamics of Birth Outside Their Community for Rural First Nations Women." International Journal of Indigenous Health 7, no. 1 (June 7, 2013): 55. http://dx.doi.org/10.18357/ijih71201112353.
Full textAbstract:
Bella Bella/Waglisla is a small community of 1,250 First Nations residents on British Columbia’s Central Coast that has enjoyed a long history of birth within the community. This ended in 2000 when services began to decline, forcing women to travel to distant referral centres before starting labour. This qualitative investigation documents the experiences of First Nations women who gave birth away from their communities. Data were collected through a written survey of women’s experiences of birth, locally or away, and through in-depth exploratory interviews of women’s stories of their experiences. A community-based research advisory committee guided the study and ethical approval was obtained from both the community band council and the appropriate university research ethics board. Themes from the interviews included the influence of care providers in decision-making, the isolating experience of birth in a referral community, the stress of traveling to access care, the value of emotional and practical support from family and community, and community confusion regarding the decision to close local maternity services. Participants in this study had divergent experiences of childbirth outside of their community; the natures of the experience influenced whether or not they chose or were required to leave after services closed. The experience of leaving the community was difficult for most of the women, precipitating a sense of alienation. For many, the alienation experienced was mitigated by their strong sense of resilience.
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Adhi, Fatima I., Eric R. Littmann, Ying Taur, Molly A. Maloy, Kate A. Markey, Emily Fontana, Luigi A. Amoretti, et al. "Pre-Transplant Fecal Microbial Diversity Independently Predicts Critical Illness after Hematopoietic Cell Transplantation." Blood 134, Supplement_1 (November 13, 2019): 3264. http://dx.doi.org/10.1182/blood-2019-124902.
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Background Fecal microbiota composition is associated with important outcomes after allo-HCT including survival, relapse, GVHD, and infections. We previously demonstrated in a multicenter observational study that HCT patients present with fecal microbiota configurations that have lower diversity and are distinct from those of healthy individuals, and that pre-HCT microbiota injury predicts poor overall survival. Here, we hypothesized that pre-HCT fecal microbiota features predict development of critical illness post-HCT. Methods We analyzed 828 adults who received a first allo-HCT from 2009 to 2017 at a single institution who had an evaluable fecal sample in our biobank collected within the 10 days prior to cell infusion. The patients were heterogeneous with respect to transplant indication, conditioning intensity, graft source (cord blood, peripheral blood, marrow) and graft manipulation (CD34-selection). The V4-V5 regions of 16S rRNA genes of DNA extracted from fecal samples were amplified and annotated taxonomically. The outcome of interest was time to ICU admission, which was assessed using survival-analysis methods. The reason for admission to the ICU was evaluated for each subject. Results Seventy-five (9%) patients were admitted to the intensive care unit (ICU) between the day of cell infusion and day +50; the peak incidence of ICU admission occurred on day +10. The most common indications for ICU admission were respiratory failure (65%) and infection (27%). Patients were stratified based on fecal microbiota diversity, as assessed by 16S sequencing of stool samples collected prior to transplantation, into high (inverse Simpson index ≥4) and low (<4) diversity groups following a previously-published cutoff. Patients with low diversity pre-HCT had a strikingly higher risk of ICU admission than those with high diversity (HR 2.38 [95% CI 1.5-3.7], p <0.001, see the Figure). This association remained significant in a multivariate Cox proportional hazard model that accounted for conditioning intensity, graft source, graft manipulation, and the HCT-CI comorbidity index (multivariate p = 0.003). HCT-CI score was also an independent predictor of ICU admission. The association between pre-HCT fecal diversity and ICU admission was also significant when the outcome definition was limited to ICU transfers for reason of respiratory failure or sepsis (to the exclusion of such indications as hemorrhage, anaphylaxis, or isolated dysfunctions of the cardiac, renal, or neurological systems). Conclusion Pre-transplant fecal microbial diversity is an independent predictor of intensive-care-requiring critical illness in the post-HCT period. These observations highlight the pre-HCT period as a window of opportunity to (a) assess microbiota injury in conjunction with comorbidity evaluation, (b) inform selection of antibiotic prophylaxis, gut-decontamination, GVHD-prophylaxis, or conditioning regimens, and (c) intervene with microbiota injury-remediation or prevention strategies. Figure Disclosures Brereton: Seres Therapeutics: Other: Salary Support. Clurman:Seres Therapeutics: Research Funding. Slingerland:Seres Therapeutics: Other: Salary supported by Seres funding. Shah:Janssen Pharmaceutica: Research Funding; Amgen: Research Funding. Scordo:McKinsey & Company: Consultancy; Angiocrine Bioscience, Inc.: Consultancy. Politikos:Angiocrine Bioscience Inc: Research Funding. Gyurkocza:Actinium Pharmaceuticals: Research Funding. Barker:Angiocrine Bioscience Inc: Research Funding; Gamida Cell: Research Funding; Merck: Research Funding. Perales:Kyte/Gilead: Research Funding; Miltenyi: Research Funding; MolMed: Membership on an entity's Board of Directors or advisory committees; NexImmune: Membership on an entity's Board of Directors or advisory committees; Abbvie: Honoraria, Membership on an entity's Board of Directors or advisory committees; Bellicum: Honoraria, Membership on an entity's Board of Directors or advisory committees; Bristol-Meyers Squibb: Honoraria, Membership on an entity's Board of Directors or advisory committees; Incyte: Honoraria, Membership on an entity's Board of Directors or advisory committees, Research Funding; Nektar Therapeutics: Honoraria, Membership on an entity's Board of Directors or advisory committees; Novartis: Honoraria, Membership on an entity's Board of Directors or advisory committees; Omeros: Honoraria, Membership on an entity's Board of Directors or advisory committees; Takeda: Honoraria, Membership on an entity's Board of Directors or advisory committees; Merck: Consultancy, Honoraria; Medigene: Membership on an entity's Board of Directors or advisory committees; Servier: Membership on an entity's Board of Directors or advisory committees. Giralt:Amgen: Consultancy, Research Funding; Spectrum Pharmaceuticals: Consultancy; Actinium: Consultancy, Research Funding; Celgene: Consultancy, Research Funding; Kite: Consultancy; Johnson & Johnson: Consultancy, Research Funding; Jazz Pharmaceuticals: Consultancy; Miltenyi: Research Funding; Takeda: Consultancy, Research Funding; Novartis: Consultancy. van den Brink:Merck & Co, Inc.: Consultancy, Honoraria; Acute Leukemia Forum (ALF): Consultancy, Honoraria; Magenta and DKMS Medical Council: Membership on an entity's Board of Directors or advisory committees; Juno Therapeutics: Other: Licensing; Amgen: Consultancy, Honoraria; Therakos: Consultancy, Honoraria; Seres Therapeutics: Consultancy, Honoraria, Membership on an entity's Board of Directors or advisory committees, Research Funding; Flagship Ventures: Consultancy, Honoraria; Novartis: Consultancy, Honoraria; Evelo: Consultancy, Honoraria; Jazz Pharmaceuticals: Consultancy, Honoraria. Pamer:Bristol Myers Squibb: Honoraria; Celgene: Honoraria; Seres Therapeutics: Honoraria, Patents & Royalties; MedImmune: Honoraria; Novartis: Honoraria; Ferring Pharmaceuticals: Honoraria. Peled:Seres Therapeutics: Research Funding.
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Kreitman, Robert J., Claire E. Dearden, Pier Luigi Luigi Zinzani, Julio Delgado, Tadeusz Robak, Philipp D. le Coutre, Bjorn T. Gjertsen, et al. "Moxetumomab Pasudotox-Tdfk in Heavily Pretreated Patients with Relapsed/Refractory Hairy Cell Leukemia (HCL): Long-Term Follow-up from the Pivotal Phase 3 Trial." Blood 134, Supplement_1 (November 13, 2019): 2808. http://dx.doi.org/10.1182/blood-2019-122307.
Full textAbstract:
Moxetumomab pasudotox-tdfk is a first-in-class recombinant CD22-directed cytotoxin approved in the US for the treatment of adult patients with relapsed/refractory hairy cell leukemia (HCL). The pivotal, multicenter, open-label, single-arm trial (Study 1053; NCT01829711) evaluated the efficacy, safety, immunogenicity, and pharmacokinetics of moxetumomab pasudotox-tdfk monotherapy in patients with relapsed/refractory HCL. Here we present the final analysis, describing the long-term follow-up of patients in Study 1053, with a median follow-up of 24.6 months (range 1.2-71.7). Eligible patients had received ≥ 2 prior systemic therapies, including ≥ 2 courses of a purine nucleoside analog (PNA) or 1 course of a PNA followed by ≥ 1 course of rituximab or a BRAF inhibitor. Patients received moxetumomab pasudotox-tdfk 40 µg/kg intravenously on days 1, 3, and 5 of each 28-day cycle for 6 cycles, or until minimal residual disease (MRD)-negative complete response (CR), disease progression, initiation of alternate therapy, or unacceptable toxicity. Disease response and immunohistochemistry MRD status were determined by blinded independent central review. The primary endpoint was durable CR (achieving CR and maintaining hematologic remission [HR] for > 180 days). Durable CR with HR ≥ 360 days was measured in this final analysis. HR was defined as hemoglobin ≥ 11.0 g/dL, absolute neutrophil count ≥ 1.5 × 103/µL, and platelet count ≥ 100 × 103/µL without receiving transfusions or growth factors within the 4 preceding weeks of assessment. Eighty patients (63 males; median age 60 years [range 34-84]) were enrolled and treated with moxetumomab pasudotox-tdfk. The median number of prior systemic therapies was 3 (range 2-11); 48.8% of patients were PNA-refractory and 37.5% were unfit for PNA retreatment. The median number of treatment cycles administered was 6 (range 1-7). The durable CR rate was 36.3% (29/80 patients; 95% confidence interval [CI]: 25.8-47.8%), durable CR rate with HR ≥ 360 days was 32.5% (26/80 patients; 95% CI: 22.4-43.9%), and the overall CR rate was 41.3% (33/80 patients; 95% CI: 30.4-52.8%) (Table). Overall, 27/33 (81.6%) patients who achieved a CR also achieved MRD-negative status (33.8% of all patients). HR was achieved by 64/80 patients (80.0%). The median duration of HR from CR was 62.8 months (Figure) and median progression-free survival was 41.5 months (range 0.0+ to 71.7). Per the primary analysis, the most frequent treatment-related adverse events (AEs) were nausea (28%), peripheral edema (26%), headache (21%), and pyrexia (20%). Treatment-related Grade 3/4 AEs were reported in 24 patients (30.0%) and serious AEs in 28 (35.0%). Treatment-related AEs led to study drug discontinuation in 8 patients (10.0%): hemolytic uremic syndrome (HUS), n = 4 (5.0%); capillary leak syndrome (CLS), n = 2 (2.5%); and increased blood creatinine, n = 2 (2.5%). Grade ≥ 3 CLS events occurred in 2 patients (2.5%) and Grade ≥ 3 HUS occurred in 5 patients (6.3%). In general, CLS and HUS events were manageable and reversible with appropriate supportive care and monitoring. Based on primary and follow-up analyses of serum creatinine, there was no decline in renal function over time; 12 months post-treatment all mean (SD) serum creatinine laboratory values stayed within normal limits, which suggests current management strategies for HUS (oral hydration, i.v. fluid supplementation on the day of infusion, and the use of dexamethasone) are adequate. With 24.6 months of follow-up, 4 deaths were reported: 2 due to study disease progression and 2 due to an AE (1 each of pneumonia and septic shock). Moxetumomab pasudotox-tdfk treatment was associated with a manageable safety profile. Moxetumomab pasudotox-tdfk achieved a high rate of durable responses, demonstrating the ability to achieve MRD negativity in heavily pretreated patients with HCL. Disclosures Kreitman: Genentech: Research Funding. Dearden:Abbvie: Honoraria; Genentech: Honoraria; Janssen: Honoraria; Sanofi: Honoraria. Zinzani:MSD: Consultancy, Membership on an entity's Board of Directors or advisory committees, Speakers Bureau; VERASTEM: Consultancy, Membership on an entity's Board of Directors or advisory committees, Speakers Bureau; CELLTRION: Membership on an entity's Board of Directors or advisory committees, Speakers Bureau; GILEAD: Membership on an entity's Board of Directors or advisory committees, Speakers Bureau; JANSSEN-CILAG: Membership on an entity's Board of Directors or advisory committees, Speakers Bureau; BMS: Membership on an entity's Board of Directors or advisory committees, Speakers Bureau; IMMUNE DESIGN: Membership on an entity's Board of Directors or advisory committees, Speakers Bureau; EUSAPHARMA: Consultancy, Membership on an entity's Board of Directors or advisory committees, Speakers Bureau; ROCHE: Membership on an entity's Board of Directors or advisory committees, Speakers Bureau; SERVIER: Membership on an entity's Board of Directors or advisory committees, Speakers Bureau; SANDOZ: Membership on an entity's Board of Directors or advisory committees; KYOWA KIRIN: Membership on an entity's Board of Directors or advisory committees, Speakers Bureau; CELGENE: Membership on an entity's Board of Directors or advisory committees, Speakers Bureau; SANOFI: Consultancy; PORTOLA: Membership on an entity's Board of Directors or advisory committees, Speakers Bureau. Robak:Amgen: Consultancy, Other: Travel grant; UCB: Honoraria, Research Funding; Janssen: Consultancy, Honoraria, Other: Travel grant, Research Funding; Roche: Consultancy, Other: Travel grant, Research Funding; Abbvie: Consultancy, Honoraria, Other: Travel grant, Research Funding; Gilead: Consultancy, Research Funding; BeiGene: Consultancy, Research Funding; Acerta: Research Funding; Morphosys AG: Research Funding; Takeda: Consultancy, Research Funding. le Coutre:Novartis: Honoraria, Speakers Bureau; Bristol-Myers Squibb: Honoraria, Speakers Bureau; Incyte: Honoraria, Speakers Bureau; Pfizer: Honoraria, Speakers Bureau. Gjertsen:Research Council of Norway: Research Funding; Daiichi Sankyo: Consultancy; Pfizer: Consultancy, Membership on an entity's Board of Directors or advisory committees; BerGenBio: Consultancy; KinN Therapeutics AS: Equity Ownership; Seattle Genetics: Consultancy; ERA PerMed: Research Funding; Haukeland University Hospital / University of Bergen: Employment; ACTII AS: Equity Ownership; Astellas: Consultancy; BerGenBio AS: Membership on an entity's Board of Directors or advisory committees; The Norwegian Cancer Society: Research Funding; Helse Vest Health Trust: Research Funding; EU Horizon 2020: Research Funding. Troussard:Innate Pharma: Consultancy, Membership on an entity's Board of Directors or advisory committees; Abbvie: Consultancy, Membership on an entity's Board of Directors or advisory committees; Gilead: Consultancy, Membership on an entity's Board of Directors or advisory committees; Roche: Other: Research Support; Sysmex: Other: Research Support. Roboz:Argenx: Consultancy, Membership on an entity's Board of Directors or advisory committees; AbbVie: Consultancy, Membership on an entity's Board of Directors or advisory committees; Actinium: Consultancy, Membership on an entity's Board of Directors or advisory committees; Agios: Consultancy, Membership on an entity's Board of Directors or advisory committees; Amphivena: Consultancy, Membership on an entity's Board of Directors or advisory committees; Roche/Genentech: Consultancy, Membership on an entity's Board of Directors or advisory committees; Astex: Consultancy, Membership on an entity's Board of Directors or advisory committees; Astellas: Consultancy, Membership on an entity's Board of Directors or advisory committees; Bayer: Consultancy, Membership on an entity's Board of Directors or advisory committees; Celgene: Consultancy, Membership on an entity's Board of Directors or advisory committees; Celltrion: Consultancy, Membership on an entity's Board of Directors or advisory committees; Daiichi Sankyo: Consultancy, Membership on an entity's Board of Directors or advisory committees; Eisai: Consultancy, Membership on an entity's Board of Directors or advisory committees; Janssen: Consultancy, Membership on an entity's Board of Directors or advisory committees; Jazz: Consultancy, Membership on an entity's Board of Directors or advisory committees; Novartis: Consultancy, Membership on an entity's Board of Directors or advisory committees; MEI Pharma: Consultancy, Membership on an entity's Board of Directors or advisory committees; Orsenix: Consultancy, Membership on an entity's Board of Directors or advisory committees; Otsuka: Consultancy, Membership on an entity's Board of Directors or advisory committees; Pfizer: Consultancy, Membership on an entity's Board of Directors or advisory committees; Sandoz: Consultancy, Membership on an entity's Board of Directors or advisory committees; Trovagene: Consultancy, Membership on an entity's Board of Directors or advisory committees; Takeda: Consultancy, Membership on an entity's Board of Directors or advisory committees. Karlin:Takeda: Honoraria, Membership on an entity's Board of Directors or advisory committees; Janssen: Honoraria, Membership on an entity's Board of Directors or advisory committees, Other: Travel Support; Celgene: Honoraria, Membership on an entity's Board of Directors or advisory committees; AMGEN: Honoraria, Membership on an entity's Board of Directors or advisory committees, Other: Travel Support. Kuptsova-Clarkson:AstraZeneca: Employment, Equity Ownership. Liu:Acerta Pharma: Employment. Patel:Acerta Pharma: Employment, Equity Ownership; AstraZeneca: Equity Ownership.
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Rosian, Katharina. "VP14 Screening Recommendations For Socioeconomic Disadvantages In Pregnancy." International Journal of Technology Assessment in Health Care 33, S1 (2017): 152. http://dx.doi.org/10.1017/s0266462317003087.
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INTRODUCTION:In 2015, 18.3 percent of the Austrian population were at risk of poverty and social exclusion - about 211,000 (20 percent) women aged 20–39 years were affected. International studies report that poverty may lead to an increased risk of complications and pathologies during pregnancy. Further, children who grow up in poverty often have poorer long-term health outcomes.METHODS:In order to identify recent guidelines (2011-2016) a comprehensive handsearch was conducted in the guideline databases National Guideline Clearinghouse (NGC) and Guidelines International Network (GIN). Moreover, a handsearch for systematic reviews and primary studies was conducted in PubMed.RESULTS:Two guidelines, the British National Institute for Health and Clinical Excellence (NICE) Guideline “Pregnancy and Complex Social Factors”, as well as the Australian Health Ministers' Advisory Council (AHMAC) Guideline “Antenatal Care”, address socioeconomic disadvantages of women during antenatal care. The recommendation of the AHMAC is that pregnancy care should be offered to all pregnant women. In addition, an individual approach will help to pay particular attention to socioeconomic factors and to incorporate them in routine examinations. NICE recommends in its guideline, affected women should be supported in order to ensure adequate prenatal care. NICE also defines criteria which are used to identify pregnant women who are in greater need of support. The only identified study developed and tested a tool for the identification of patients affected by poverty. The authors of this Canadian pilot study concluded that the defined questions helped to identify socioeconomically disadvantaged persons during anamnesis without stigmatizing.CONCLUSIONS:Due to the proven link between poverty and health risks, special attention must be paid to socioeconomically disadvantaged pregnant women. Research on non-stigmatizing instruments, which can identify vulnerable women, is of great importance. In addition to social policy measures, it is necessary to ensure that low-threshold services are available for socioeconomic disadvantaged women and their children.
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Desai, Sonali, Emma Stevens, Srinivas Emani, Peter Meyers, Maura Iversen, and Daniel H. Solomon. "Improving Quality of Care in Rheumatoid Arthritis Through Mobile Patient-Reported Outcome Measurement: Focus Group Study." JMIR Formative Research 4, no. 3 (May 27, 2020): e15158. http://dx.doi.org/10.2196/15158.
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Background Patient-reported outcomes (PROs) for chronic disease management can be integrated into the routine workflow by leveraging mobile technology. Objective The objective of our study was to describe the process of our quality improvement (QI) efforts using tablets for PRO collection in a busy, academic rheumatology practice to support a treat-to-target (TTT) approach for rheumatoid arthritis (RA) management. Methods Our QI team designed a process for routine collection of PROs for RA patients at the Arthritis Center, employing information technology and an electronic medical record (EMR) system. Patients received a tablet at the clinic check-in desk to complete the Routine Assessment of Patient Index Data 3 (RAPID3) survey, a validated RA PRO. RAPID3 scores were uploaded to the EMR in real time and available for use in shared decision making during routine office visits. Weekly data were collected on RAPID3 completion rates and shared with front desk staff and medical assistants to drive improvement. Patients in our patient family advisory council and focus groups provided informal feedback on the process. Results From May 1, 2017, to January 31, 2019, a total of 4233 RAPID3 surveys were completed by 1691 patients. The mean age of patients was 63 (SD 14) years; 84.00% (1420/1691) of the patients were female, and 83.00% (1403/1691) of the patients were white. The rates of RAPID3 completion increased from 14.3% (58/405) in May 2017 to 68.00% (254/376) in September 2017 and were sustained over time through January 2019. Informal feedback from patients was positive and negative, relating to the usability of the tablet and the way rheumatologists used and explained the RAPID3 data in shared decision making during the office visit. Conclusions We designed a sustainable and reliable process for collecting PROs from patients with RA in the waiting room and integrated these data through the EMR during office visits.
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Washington, Tiffany, and Lynn Friss Feinberg. "The Experience of Working Family Caregivers: Implications for a National Paid Leave Policy." Innovation in Aging 4, Supplement_1 (December 1, 2020): 721. http://dx.doi.org/10.1093/geroni/igaa057.2550.
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Abstract Family caregivers provide the bulk of unpaid care to older adults. The typical family caregiver is a 49-year-old woman who works full time and simultaneously provides an average of 24 hours of care per week for an older relative. Unfortunately, their caregiving duties places them at risk for lost wages and termination due to frequent interruptions at work, especially in the absence of a national paid family leave policy. It is possible that such a policy could mitigate these risks; however, the United States is the only developed nation that lacks a national paid family leave policy for all workers. This symposium will highlight the psychosocial, economic, and health issues experienced by working caregivers, and conclude by linking presenters’ findings to implications for a national paid leave policy. To start, presenter one will describe findings from a scoping review on workplace experiences of female family caregivers. Next, presenter two will describe findings from a systematic review to explore predictors of the adoption and implementation of state-level paid family leave policies. Presenter three’s study examines interest in supportive services among working and non-working Black caregivers in the Deep South. Presenter four will describe factors associated with healthcare utilization of working caregivers using data from the Regional Healthcare Partnership – Region 17 Health Assessment Survey. The final presenter, HHS Advisory Council to Support Grandparents Raising Grandchildren co-chair, will describe development of policy initiatives to identify, coordinate, and promote information, resources, and best practices for working grandparents raising grandchildren.
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Sprague, Briana, Kylie Meyer, and Chivon Mingo. "ESPO and Behavioral and Social Sciences Section Symposium: Addressing the Needs of Black, Indigenous, and People of Color (BIPOC) Communities Throughout the Stage Model." Innovation in Aging 5, Supplement_1 (December 1, 2021): 315–16. http://dx.doi.org/10.1093/geroni/igab046.1232.
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Abstract Behavioral interventions have been successfully deployed to prevent and manage chronic conditions among older persons, improve mental health, and support caregivers’ ability to cope with care stressors. However, intervention effects may not be equally distributed among populations, nor equally acceptable or accessible among Black, Indigenous, and People of Color (BIPOC) communities. In this symposium, we will discuss how behavioral interventions can better meet the needs of BIPOC older adults and caregivers, who may not equally benefit from advancements in behavioral interventions due to issues such as a reliance on non-diverse study samples and lack of cultural tailoring. This symposium will be structured in accordance with the National Institutes of Health Stage Model of Behavioral, and will feature researchers whose work address BIPOC needs across the trajectory of intervention development. Representing Stage 1 research, Fayron Epps, PhD, RN, will describe her use of a community advisory council to develop a faith-based toolkit to support African Americans living with dementia and their caregivers. Next, Laura Gitlin, PhD, MA, will describe her experiences testing a Stage 3 intervention to lower depression among African Americans, including challenges advancing the culturally-tailored program to Stage 4. Lastly, Shanae Rhodes, BSN, RN will describe her Stage 2 evaluation of a conversation group created and attended by women of color to socially connect in response to COVID-19. Although speakers will describe research projects that represent specific research Stages, this symposium will have a large discussion-based component and will cover all parts of the Stage Model of Behavioral Intervention.
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Hudgens, Stacie, Pierluigi Porcu, Pietro Quaglino, Auris Huen, Lysbeth Floden, Mollie Leoni, and Madeleine Duvic. "Evaluation of Symptom and Side Effect Bother in Cutaneous T-Cell Lymphoma Patients Treated with Mogamulizumab or Vorinostat." Blood 132, Supplement 1 (November 29, 2018): 3592. http://dx.doi.org/10.1182/blood-2018-99-116346.
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Abstract OBJECTIVES: To determine whether individual items on patient-reported outcome measures show significant differences over the course of treatment for patients with cutaneous T-cell lymphoma (CTCL). METHODS: A large, open-label, multi-center, randomized, Phase 3 study compared mogamulizumab, an anti-C-C chemokine receptor type 4 (CCR4)-targeted antibody, versus vorinostat in 372 CTCL patients who had failed ≥ 1 prior systemic therapy. Clinical quality of life (QoL) measurements included Skindex-29, Functional Assessment of Cancer Therapy-General (FACT-G), and two measures of pruritus (a Likert Scale and ItchyQoL). Analyses on identified individual symptom items of Skindex-29 and toxicity items of FACT-G were conducted using longitudinal generalized estimation equations (GEE) of the post-baseline, treated period assessments (through Cycles 5 or 6, depending on collection schedule) for these items. The proportion of patients experiencing a 1-grade improvement is presented in terms of frequency and percentage by treatment arm. Forest plots of odds ratios (OR) and associated confidence intervals (CI) from the GEE analyses were generated to characterize the likelihood of a 1-grade categorical improvement (eg, improvement by 1 category on the verbal response scale) on individual items for patients treated with mogamulizumab compared to vorinostat during the first 6 cycles of therapy. RESULTS: The likelihood of patients experiencing a 1-grade improvement in skin symptoms, side effect bother, and lack of energy was higher for patients treated with mogamulizumab compared to vorinostat (OR > 1.0). Patients treated with mogamulizumab were more likely to observe a 1-grade improvement in painful skin (OR=1.74, CI=1.180-2.572), irritated skin (OR=1.34, CI=0.909-1.978), lack of energy (OR=2.20, CI=1.461-3.309), side effect bother (OR=1.28, CI=0.810-2.020), and general cancer pain (OR=1.38, CI=0.922-2.063) within 6 cycles of therapy (Figure). The single item descriptive and proportion analysis of 1+ grade improvement at cycle 5 from baseline is presented (Table). CONCLUSIONS: These data provide detailed information on the cumulative probability of categorical improvement of individual items on the skin symptoms of Skindex-29 and the toxicity bother, energy, and pain items of FACT-G. These results support symptom benefit of mogamulizumab over the course of treatment compared to vorinostat. Disclosures Porcu: Innate Pharma: Consultancy. Leoni:Kyowa Kirin: Employment. Duvic:Oncoceuticals: Research Funding; Precision Oncology, LLC: Membership on an entity's Board of Directors or advisory committees; MiRagen Therapeutics: Consultancy; UT MD Anderson Cancer Center: Employment; Aclaris Therapeutics Int'l Ltd.: Honoraria, Membership on an entity's Board of Directors or advisory committees; Defined Health: Consultancy; Jonathan Wood & Associates: Other: Speaker; Allos: Research Funding; Array Biopharma: Consultancy, Honoraria; Cell Medica Inc.: Consultancy, Honoraria; Concert Pharmaceuticals, Inc.: Consultancy; Guidepoint Global: Consultancy; American Council on Extracorporeal Photopheresis (ACE): Membership on an entity's Board of Directors or advisory committees; Shape: Research Funding; Medscape: Other: Speaker/Preceptor; Huya Bioscience Int'l: Consultancy; Eisai: Research Funding; Dr. Reddy's Laboratories (A.K.A. Promius Pharma): Consultancy; Forty Seven, Inc.: Membership on an entity's Board of Directors or advisory committees; Clinical Care Options: Consultancy; Huron Consulting Group: Consultancy; Millennium Pharmaceuticals, Inc.: Honoraria, Membership on an entity's Board of Directors or advisory committees, Research Funding; Soligenix, Inc.: Membership on an entity's Board of Directors or advisory committees, Research Funding; Kiniksa Pharmaceuticals: Consultancy; The Lynx Group: Consultancy; Celgene Corp: Consultancy, Honoraria, Membership on an entity's Board of Directors or advisory committees; Mallinckrddt Pharmaceuticals (formerly Therakos): Honoraria, Membership on an entity's Board of Directors or advisory committees, Research Funding; Kyowa Hakko Kirin, Co: Honoraria, Membership on an entity's Board of Directors or advisory committees, Research Funding; MEDACorp: Consultancy; Medivir AB: Membership on an entity's Board of Directors or advisory committees; Taiwan Liposome Company LTD: Consultancy; Evidera, Inc.: Consultancy; Rhizen Pharma: Research Funding; Spatz Foundation: Research Funding; Tetralogics: Research Funding; Seattle Genetics: Honoraria, Membership on an entity's Board of Directors or advisory committees, Research Funding.
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Fleshman, C., A. Wolfson, C. H. Ripple, K. Bonuck, L. Hale, I. Donskoy, R. Robbins, E. McGlinchey, G. Jean-Louis, and J. Owens. "1181 Community-based Organizations Seek Sleep Health Education." Sleep 43, Supplement_1 (April 2020): A451. http://dx.doi.org/10.1093/sleep/zsaa056.1175.
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Abstract Introduction Increasing attention to the importance of sleep among children raises questions about how to implement accessible, effective interventions. Part of answering those questions rests in determining interest in and demand for programming. Pajama Program (PJP), a 501(c)(3), works with nearly 4,000 community-based organizations (CBOs) nationally that work with children exposed to adversity, including: foster care/child welfare; shelters; low-income schools, after-school, and early care and education programs; and social-service providers. Anticipating its launch of sleep health education programs, PJP and its Good Night Advisory Council of sleep experts designed a CBO needs assessment. Methods The survey was distributed electronically to staff at 3,911 CBOs; 1,635 organizations responded (42%). Results Across respondents, 65% work with children birth to 18 in settings that were non-residential (39%), residential (18%), or both (43%); most (91%) worked with participants for over one month. CBOs included child welfare/foster care (20.6% of respondents); transitional housing/shelter (20.5%); social services (15.6%); and early care and education (12.7%). Interest in sleep health education was high across all program types: 80 to 89% of programs within each type wanted information for staff and/or caregivers, specifically handouts (among 93% of programs), articles (88%), videos (85%), and workshops (70%). At least 90% of respondents who provided early care and education, parenting, and crisis services were interested in sleep health education for program staff. These program types also had high interest in sleep health education for caregivers, as did child welfare/foster care, school/after school, and shelters (all at least 90% of respondents). Conclusion The CBOs in this sample recognize sleep is an issue among the children they serve, but most did not have access to information on sleep health. These results establish the need for sleep health education and suggest preferred modalities. The project is a model for partnerships involving researchers, nonprofits, and community-based organizations. Support Funding for this project was provided by Pajama Program, a national 501(c)(3) non-profit.
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Grain, Heather. "Information systems in the new world: an emerging national approach." Australian Health Review 29, no. 3 (2005): 292. http://dx.doi.org/10.1071/ah050292.
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AUSTRALIA IS ONE OF MANY countries around the world wanting to take advantage of clinical decision support systems to reduce misadventure, improve quality of care and enhance health outcomes. Policy and infrastructure developments that could remove many of the barriers to the implementation of these systems are being considered by the Australian Health Ministers? Advisory Council (AHMAC) over the next few months. These initiatives include processes for national identification of health care recipients; common approaches to consent to information sharing and access control in the electronic health care environment; secure messaging infrastructure; a national medicines directory and agreement on national terminology.1 These considerations are taking place in a context of jurisdictional cost sharing, with mutual benefits being sought. Detailed business cases have been developed, and supporting policy and practical pathways forward are actively sought. This joint policy and infrastructure development approach will seek to build consistent, shared formats and risk management, as well as shared financial responsibility. This approach is seen as more likely to lead to system change and implementation, where previously almost every advancement has succeeded in identifying more obstacles. The kind of objectives outlined above are a major underpinning of HealthConnect and state-based health information system initiatives across the country. These initiatives are extremely expensive, require significant infrastructure investment to achieve the benefits they promise, and none can be successfully implemented solely by information technology or information system professionals. It is vital that health care managers at all levels and domains of health care appreciate the success factors when making decisions about the introduction and management of these systems. The information world itself is changing for us all. These changes don?t just affect the information managers or the information technology (IT) enthusiasts found in many clinical areas of our health care organisations. As in other areas of our lives, IT has invasive effects on the clinical workplace, administration and government offices. Managers in health care are often frustrated by what is seen as a failure of IT to deliver on its promise of better decision support systems, sharing of clinical information between organisations and faster access to patient information and clinical knowledge. Nevertheless, these systems are already changing the method of collecting and using clinical information in the workplace, and are having an impact on the skills needed by all health professionals, including the health administrator.
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Manni, Michael, Paige Barwick, Sunyi Zhang, Brittany Black, Hana Moles, Hakim Lakhani, Jocelyn H. Siegel, Michael J. Hassett, and Nadine Jackson McCleary. "Self-reported health-related social needs screening for new adult patients in an ambulatory oncology setting." JCO Oncology Practice 19, no. 11_suppl (November 2023): 194. http://dx.doi.org/10.1200/op.2023.19.11_suppl.194.
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194 Background: Health-related social needs (HRSN) are strongly associated with patient health outcomes, making screening for HRSN a critical component to providing patient-centered oncology care. In April 2023, the Dana-Farber Cancer Institute (DFCI) Patient Reported Data (PRD) Program led the deployment of an EHR-integrated HRSN screening tool. Embedded within our New Patient Intake Questionnaire, the screening supports early identification of and response to needs, informs care planning and delivery, and aims to improves outcomes. Methods: PRD, in collaboration with DFCI’s Patient & Family Advisory Council and others, elected to use an HRSN screening tool deployed across the Mass General Brigham healthcare system (with which DFCI shares an EHR). HRSNs assessed include transportation, housing security, food security, medication costs, utility costs, family and childcare, education, and employment. New adult oncology patients (and/or proxy) were offered the HRSN questionnaire in multiple languages on any internet-enabled device via the patient portal or on a tablet in clinic. Responses were immediately available in the EHR for care team review with needs highlighted to support clinical decision making. Aggregate data is available within the DFCI electronic data warehouse and disseminated for internal use via a Tableau dashboard. Results: Between April 23 and May 31, 2023, 1,842 patients completed the HRSN screening questionnaire. Of responders, 246 (13.4%) were non-white, 725 (39.4%) were male, 72 (4.0%) had a non-English preferred language, and the mean age was 57 years at time of response. 12.8% (251) reported at least one HRSN. Reported HRSNs are described in Table 1. Among those reporting at least one need, the most frequently reported HRSNs are food insecurity (38.7%), utility costs (33.5%), and employment (20.7%). Conclusions: Even when considering much of the population seen at our comprehensive cancer center are relatively well-resourced, we find a meaningful proportion (12.8%) of patients reported HRSNs, demonstrating the importance of screening patients to ensure patient-centered care. Future work will determine additional points for rescreening of HRSNs and focus on improving patient’s access and uptake of screening. We will continue socializing and analyzing HRSN data to improve clinical practice and support the development of interventions to connect patients with available resources.[Table: see text]
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Beiser, Morton, Alasdair M. Goodwill, Patrizia Albanese, Kelly McShane, and Parvathy Kanthasamy. "Predictors of the integration of Sri Lankan Tamil refugees in Canada: pre-migration adversity, mental health, personal attributes, and post-migration experience." International Journal of Migration, Health and Social Care 11, no. 1 (March 16, 2015): 29–44. http://dx.doi.org/10.1108/ijmhsc-02-2014-0008.
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Purpose – Refugees integrate less successfully than other immigrants. Pre-migration stress, mental disorder and lack of human capital are the most popular explanations, but these propositions have received little empirical testing. The current study of Sri Lankan Tamils in Toronto, Canada, examines the respective contributions of pre-migration adversity, human capital, mental health and social resources in predicting integration. The paper aims to discuss these issues. Design/methodology/approach – Participants are a probability sample of 1,603 Sri Lankan Tamils living in Toronto, Canada. The team, with a community advisory council, developed structured interviews containing information about pre- and post-migration stressors, coping strategies, and family, community, and institutional support. The questionnaire included the World Health Organization Composite International Diagnostic Interview module for post-traumatic stress disorder (PTSD). Interviews were translated, back-translated and administered by bilingual interviewers. Findings – Two dimensions of integration emerged from a factor analysis of integration-related items: economic and psychosocial. Hierarchical multiple regression analyses revealed that PTSD militated against refugee economic integration, whereas pre-migration adversity (but not PTSD) compromised psychosocial integration. On both measures, increasing length of residence in Canada, and gender (male) were predictors of good integration, whereas age at arrival had an inverse relationship with integration. Religiosity had a positive effect on psychosocial integration but a negative effect on economic. Favourable perceptions of the health care system predicted economic integration and non-family support predicted psychosocial integration. Originality/value – Results underline the importance of studying integration as a multifaceted phenomenon, help explain why refugees integrate less successfully than other immigrants, and highlight the importance of including mental health and mental health-related issues in integration discourse.
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Moody, Lesley, Jorge Navarro, Esther Green, Laura Macdougall, and Simron Singh. "Assessing person-centered care readiness at a cancer system level through a provincial environmental scan in Ontario." Journal of Clinical Oncology 32, no. 30_suppl (October 20, 2014): 70. http://dx.doi.org/10.1200/jco.2014.32.30_suppl.70.
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70 Background: Cancer Care Ontario (CCO) is an Ontario government agency which drives quality and improvement for the Ontario cancer system. Person-Centred Care (PCC) has been an identified goal both from the recent Institute of Medicine (IOM) report and as a corporate strategic priority at CCO. CCO is assessing the degree of PCC practiced in Ontario’s Cancer system to design interventions to improve this aspect of care delivery and design. Currently no established or validated indicators for PCC have been tested and evaluation methodology of PCC is unclear. A baseline of the system’s focus on PCC is required to establish a provincial plan to drive quality improvement. Methods: A series of 14 semi-structured interviews were conducted at Ontario’s regional cancer centers (RCCs) to determine the degree of development of a PCC culture in Ontario’s cancer system. Interviews were conducted with all 14 Regional Cancer Programs (RCPs) including: - 10 Patient and Family Advisors (PFAs); and - 56 RCPs and hospital leaders (Directors, Managers, Physicians, Nursing, Psychosocial Oncology providers). Sixty-six participants (direct interviews/questionnaires) were interviewed; questionnaires were received from 28 organizations (hospitals/RCCs). Results: Although 86% of interviewed organizations reported having a PCC corporate strategy, 41% of hospitals and 73% of RCCs do not have dedicated staff to support the strategy. 53% of organizations work with a Patient and Family Advisory Council (PFAC) and only 43% engage PFAs in decision-making tables with 94% of RCPs expressing a need for guidance on PFA engagement. Key facilitators to promote PCC are: strong and committed leadership and continuous staff engagement/education. Primary barriers include: equity in PFA recruitment, cultural resistance to PCC, and lack of evaluation frameworks. Conclusions: Advancing PCC requires strong provincial direction, training to foster PFA engagement, and measurement and accountability frameworks for cultural change. Clear definitions on accountabilities for PCC roles and expectations for PFAs and staff are also key to supporting PCC regionally.
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Oser, Tamara K., Linda Zittleman, Kristen Curcija, Bethany Kwan, Shawnecca Burke, Sindy Gonzalez, Kelsey Huss, et al. "Informing a Randomized Control Trial in Rural Populations: Adaptation of a Diabetes Self-Management Education and Support Intervention." JMIR Diabetes 7, no. 2 (June 10, 2022): e35664. http://dx.doi.org/10.2196/35664.
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Background Over 34 million people in the United States have diabetes, with 1.5 million diagnosed every year. Diabetes self-management education and support (DSMES) is a crucial component of treatment to delay or prevent complications. Rural communities face many unique challenges in accessing DSMES, including geographic barriers and availability of DSMES programs that are culturally adapted to rural context. Objective Boot Camp Translation (BCT) is an established approach to community-based participatory research used to translate complex clinical and scientific information into concepts, messages, and materials that are understandable, meaningful, and relevant to community members and patients. This study aimed to utilize BCT to adapt an existing DSMES program for delivery in rural primary care for English- and Spanish-speaking people with diabetes. Methods The High Plains Research Network (HPRN) Community Advisory Council (C.A.C.) partnered with researchers at the University of Colorado and University of Utah to use BCT to aid in translating medical jargon and materials from an existing DSMES program, called “Diabetes One Day (D1D).” BCT consisted of 10 virtual meetings over a 6-month period among the C.A.C., which included 15 diverse community stakeholders. Both English-speaking and bilingual Spanish-English–speaking C.A.C. members were recruited to reflect the diversity of the rural communities in which the adapted program would be delivered. Results The BCT process guided adaptations to D1D for use in rural settings (R-D1D). R-D1D adaptations reflect both content and delivery to assure that the intervention is appropriate and likely to be accepted by rural English- and Spanish-speaking people with diabetes. Additionally, BCT informed the design of recruitment and program materials and identification of recruitment venues. During the BCT process, the importance of tailoring materials to reflect culture differences in English- and Spanish-speaking patients was identified. Conclusions BCT was an effective strategy for academic researchers to partner with rural community members to adapt an existing DSMES intervention for delivery in rural areas to both English- and Spanish-speaking patients with diabetes. Through BCT, adaptations to recruitment materials and methods, program content and delivery, and supplemental materials were developed. The need to culturally adapt Spanish materials with input from stakeholders rather than simply translate materials into Spanish was highlighted. The importance of increasing awareness of the connection between diabetes and depression or diabetes distress, adaptations to include local foods, and the importance of the relationship between people with diabetes and their primary care practices were identified.
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Grace, Rachael F., and Wilma Barcellini. "Survey of 275 Patients and Caregivers Affected By Pyruvate Kinase Deficiency: Impact of Communication with Hematologists on Mental Health and Quality of Life." Blood 138, Supplement 1 (November 5, 2021): 1948. http://dx.doi.org/10.1182/blood-2021-152326.
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Abstract Background. Pyruvate Kinase deficiency (PKD) is a rare congenital hemolytic anemia which affects approximately three people per million individuals worldwide. With no disease-modifying treatments currently available, management tends to focus on supportive symptom control such as blood transfusions. PKD has a profound, wide-ranging impact on quality of life (QoL). Patient advocacy and patient-reported outcomes research has been limited. The PKD Advocacy Advisory Council (AAC), a group of patients, caregivers, patient advocates and physicians, was formed in 2020, by Agios Pharmaceuticals, to improve both timely diagnosis and access to education, support and care for individuals with PKD. Objective. The AAC initiated a survey to explore communication between patients/ caregivers affected by PKD and their hematologists to inform future best practices and improve outcomes. Methods. A web-based, quantitative and qualitative survey was conducted amongst adult patients with PKD, and adult caregivers, with respondents from 11 countries including France, Germany, Italy, Spain, the UK and US. Question types included closed-ended, multiple choice, Likert scale and binary choice plus free text. The survey was carried out according to British Healthcare Business Intelligence Association Legal and Ethical Guidelines, as well as guidelines established by the UK's Market Research Society. Participants were recruited via online panels and via AAC member channels, including PKD Facebook groups. Results : The survey was completed by 200 adult patients with PKD and 75 adult caregivers (n=275). Twenty percent of patients were >50 years of age, 64% were ages 31-50 years and 17% were 18-30 years of age. Half of the patients had been diagnosed for >10 years. Although 82% of patients reported that their hematologist manages PK deficiency "well", the survey revealed gaps in hematologists' understanding. Only 56% of respondents stated their hematologist is able to answer disease management questions and only 44% say their hematologist searches for and finds solutions to optimize disease management. Less than half of respondents, 44%, reported that their hematologists demonstrate a deep knowledge of PKD. The survey revealed an unmet need regarding emotional and psychosocial support with 25% of respondents reporting feeling neither positive nor negative, or somewhat negative, after hematologist interactions and 29% reporting at least one negative emotion following interactions. After meeting with their hematologist, 21% of respondents report feeling worried, 17% anxious, and 17% depressed. Communication with the hematologist was reported to be negative most often among patients who receive 0 transfusions per year. Within this group, only 62% report that their hematologist manages their condition well compared to 82% overall (p=0.003). Only 51% state that their hematologist understands the impact of PK deficiency on their QoL (compared to 83% amongst respondents receiving one or more transfusions per year, p<0.001). Of those who are not transfused, only 44% state their hematologist takes their perspective and experiences into consideration for their disease management plan (compared to 75% amongst respondents receiving one or more transfusions per year, p<0.001). Conclusions PKD is a lifelong chronic disease that significantly impacts QoL of patients and families. The results of this largest ever survey of patients and caregivers with PKD point to a need to adapt clinical approaches to improve outcomes. Hematologists should seek to improve their understanding of the disease and its burden, particularly in non-transfused patients. Care should attend to emotional and psychosocial health aspects. Clinicians should consult with other medical specialists, including hematologists who specialize in PKD, to ensure complications are managed effectively. More research is needed to build on the survey insights, drive further awareness and understanding of the needs of those living with PKD among hematologists, and inform approaches to improve outcomes. The authors would like to acknowledge and thank members of the AAC that made this work possible. Figure 1 Figure 1. Disclosures Grace: Dova: Membership on an entity's Board of Directors or advisory committees, Research Funding; Novartis: Research Funding; Agios: Research Funding; Principia: Membership on an entity's Board of Directors or advisory committees. Barcellini: Novartis: Honoraria; Bioverativ: Membership on an entity's Board of Directors or advisory committees; Agios: Honoraria, Research Funding; Alexion Pharmaceuticals: Honoraria; Incyte: Membership on an entity's Board of Directors or advisory committees.
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Munday, Angela, and Whitney Vowels. "It Takes a Village: Coordinating and Streamlining Access to Palliative Care Resources through a Centralized Referral and Contact." International Journal of Integrated Care 23, S1 (December 28, 2023): 176. http://dx.doi.org/10.5334/ijic.icic23385.
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Introduction/Background: The Couchiching Ontario Health Team (COHT) is a first-round health team in rural Ontario, Canada, designed as part the Provincial Government’s new model of health care delivery that puts patients, families and caregivers at the center of the health care system. The COHT members include Family Health Teams, primary care physicians, home care support services, an acute care hospital, Indigenous healing providers, community housing support services, a fulsome Patient and Family Advisory Council and many others. As part of the year-one priority population strategy, improving resource allocation and multi-provider care delivery for Palliative Patients was identified as of utmost importance.
The COHT Palliative Care Network identified multiple doors of resource access, multiple referrals and a variety of disparate services available, but not formally connected, for one of the most vulnerable populations. We heard from patients, families and caregivers that they were confused about who to contact first, specifically those without a Primary Care Provider, and would often turn to acute care services as a result.
Engagement – Shared Values and Vision: The Palliative Care Network Working Group brought together a fulsome compliment of multi-sectoral, interdisciplinary team members, on a monthly basis, to work towards a common goal; ensuring one-door access to all palliative care services within the Couchiching area.
After a gap analysis identified not only gaps in the system, but also instances where work was being duplicated (from a lack of shared care plans and standardized communication), the group started to focus on identifying the needs for the palliative population, and their caregivers to access a fulsome resource complement, geared to every stage of their care journey, by ensuring no door would be the wrong door.
This led to the creation of One-number and One-referral accessed by Primary Care, Nurse Practitioners, Nurses and even community members themselves, for the purpose of accessing and navigating necessary services. By completing one referral form and answering a few simple questions a patient or their caregiver can be directed to Nursing Services for symptom relief or end of life goals, Hospice to inquire about a bed, Social Work for grief and bereavement services, volunteer or faith groups and even connected with Primary Care.
System Wide Governance and Leadership: By assigning governance through shared accountability agreements, to a multi-organizational OHT, each group member feels responsible for the outcomes of the population as a whole, providing a team-based approach to care delivery. While still working within the constraints of traditional funding principles, organizations are dividing up work, and creatively finding ways to ensure care is provided to patients in their preferred setting, which is often their own home. With human health resource scarcity, and burnout at the forefront of healthcare, the centralized referral’s ability to triage patients with the greatest needs, and share that responsibility with other Working Group members has been incredibly impactful and has allowed for the navigation, and coordination of integrated services to be seamlessly delivered by a varied group of providers to offer wraparound care for the most vulnerable population.
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Rivera, Daniel, Tapan M. Kadia, Guillermo Montalban-Bravo, Stefan Faderl, Koji Sasaki, Nicholas J. Short, Naval Daver, et al. "Liposomal Cytarabine and Daunorubicin (CPX-351) in Combination with Gemtuzumab Ozogamicin (GO) in Relapsed Refractory (R/R) Acute Myeloid Leukemia (AML) and Post-Hypomethylating Agent (Post-HMA) Failure High-Risk Myelodysplastic Syndrome (HR-MDS)." Blood 138, Supplement 1 (November 5, 2021): 2323. http://dx.doi.org/10.1182/blood-2021-149840.
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Abstract INTRODUCTION: The outcome of patients (pts) with R/R AML or MDS after failing HMA and/or BCL-2 inhibitor combinations is poor. CPX-351 (Vyxeos™) is a dual liposomal formulation of cytarabine and daunorubicin, at a fixed synergistic 5:1 molar ratio, approved by the US Food and Drug Administration (FDA) for the treatment of newly diagnosed therapy-related AML or AML with myelodysplastic related changes (AML MRC). GO (Mylotarg™) is a humanized immunoglobulin G4 antibody directed against CD33 and conjugated to the DNA toxin calicheamicin, also approved by the FDA for the treatment of newly diagnosed or R/R CD33-positive AML. We have hypothesized that the combination of CPX-351 and GO induces superior antitumor efficacy compared to either agent alone for this patient population. GOALS: To determine the safety and efficacy of CPX-351 in combination with GO in patients with R/R AML and post-HMA failure HR-MDS. METHODS: Here we present updated results of this single-arm, pilot study (NCT03672539) enrolling pts with CD33 positive R/R AML, post-HMA failure HR-MDS (>10% blasts). Pts received induction cycle CPX-351 (daunorubicin 44 mg/m 2 and cytarabine 100 mg/m 2) administered via intravenous (IV) infusion on days 1, 3, and 5. GO was administered at a dose of 3 mg/m 2 (capped at one 4.5 mg vial) IV on day 1. Pts not attaining complete remission (CR) or CR with incomplete count recovery (CRi) after 1 cycle, could receive a 2 nd induction cycle of CPX-351 at the same dose, but only on days 1 and 3 with GO 3 mg/m 2 on day 1. Pts attaining CR/CRi could receive up to 2 consolidation cycles, after a minimum of 4 weeks from the start of the last cycle with CPX-351 (daunorubicin 29 mg/m 2 and cytarabine 65 mg/m 2) IV on days 1 and 3 and GO at 3 mg/m 2 on day 1. GO was only administered during the second consolidation cycle if there was evidence of minimal residual disease (+MRD) as measured by flow cytometry. GO could also be administered as a single agent for maintenance treatment on day 1 every 6 weeks, in case of persistent detection of MRD. RESULTS: Twenty-four pts have been enrolled between November 2018 and April 2021. Patient characteristics are summarized in Table 1. Twenty-three pts were diagnosed with R/R AML, and 1 with HR-MDS. Eighteen (75%) pts had previously been treated with venetoclax in combinations with HMA's and/or chemotherapy . We observed an overall response rate (ORR) of 55% (n=13), including CR (n=4), CRi (n=4) and PR (n=5). Responses are summarized in Table 2. Among the eight-pts with CR/CRi, 4 were in an MRD negative remission. None of the pts transitioned to stem cell transplantation (SCT) due to age and comorbidities. One patient in CR after induction cycle was taken off the study on day 40 due to infection and concerns of myelosuppression during consolidation. This patient was transitioned to decitabine monotherapy and remains in remission. Three pts received 2 inductions courses, 5 pts received consolidation and 1 pts received GO maintenance. Among responders, the median time to ANC >0.5 x10 9/L was 46 days (30-101) and PLT >50 x10 9/L was 42 days (33-76), the median time to ANC >1 x10 9/L was 50 days (31-113) and PLT >100 x10 9/L was 42 days (34-104) after induction (Table 3). With a median follow-up of 24 months, the median OS was 5 months [95% CI 1.9-8] (Figure 2), and the median duration of response was 7 months [95% CI 0-9]. Adverse events regardless of causality (Table 4) were mainly due to infectious complications. There were no treatment-related grade 3-4 non-hematological toxicity. Thirty-day mortality was 8% (n=2); both pts died from complications of septicemia. Five additional pts (21%) died within 60 days of treatment, including 2 with progressive disease, 2 with persistent cytopenias and who withdrew care due to worsening performance status, and 1 whose family also withdrew care after the patient was found to have a large hemorrhagic left temporal lobe brain mass. CONCLUSION: The combination of CPX-351 and GO is feasible and continues to show activity with acceptable toxicities in this high-risk disease population. The presence of significant myelosuppression and infectious complications remain a challenge in patients treated with this regimen. Figure 1 Figure 1. Disclosures Kadia: Jazz: Consultancy; Genentech: Consultancy, Other: Grant/research support; Liberum: Consultancy; Amgen: Other: Grant/research support; Pulmotech: Other; Cure: Speakers Bureau; AbbVie: Consultancy, Other: Grant/research support; Dalichi Sankyo: Consultancy; BMS: Other: Grant/research support; Novartis: Consultancy; Pfizer: Consultancy, Other; Aglos: Consultancy; Sanofi-Aventis: Consultancy; Cellonkos: Other; Ascentage: Other; Genfleet: Other; Astellas: Other; AstraZeneca: Other. Faderl: Jazz Pharmaceuticals: Current Employment, Current equity holder in publicly-traded company. Sasaki: Pfizer: Membership on an entity's Board of Directors or advisory committees; Daiichi-Sankyo: Membership on an entity's Board of Directors or advisory committees; Novartis: Consultancy, Research Funding. Short: Amgen: Consultancy, Honoraria; Jazz Pharmaceuticals: Consultancy; AstraZeneca: Consultancy; Takeda Oncology: Consultancy, Research Funding; Astellas: Research Funding; Novartis: Honoraria; NGMBio: Consultancy. Daver: Bristol Myers Squibb: Consultancy, Research Funding; Sevier: Consultancy, Research Funding; Gilead Sciences, Inc.: Consultancy, Research Funding; Genentech: Consultancy, Research Funding; Trillium: Consultancy, Research Funding; Glycomimetics: Research Funding; Novimmune: Research Funding; Amgen: Consultancy, Research Funding; FATE Therapeutics: Research Funding; Trovagene: Consultancy, Research Funding; Hanmi: Research Funding; Abbvie: Consultancy, Research Funding; Astellas: Consultancy, Research Funding; Pfizer: Consultancy, Research Funding; ImmunoGen: Consultancy, Research Funding; Daiichi Sankyo: Consultancy, Research Funding; Novartis: Consultancy; Jazz Pharmaceuticals: Consultancy, Other: Data Monitoring Committee member; Dava Oncology (Arog): Consultancy; Celgene: Consultancy; Syndax: Consultancy; Shattuck Labs: Consultancy; Agios: Consultancy; Kite Pharmaceuticals: Consultancy; SOBI: Consultancy; STAR Therapeutics: Consultancy; Karyopharm: Research Funding; Newave: Research Funding. DiNardo: AbbVie: Consultancy, Research Funding; Forma: Honoraria, Research Funding; Takeda: Honoraria; ImmuneOnc: Honoraria, Research Funding; Bristol Myers Squibb: Honoraria, Research Funding; Notable Labs: Current holder of stock options in a privately-held company, Membership on an entity's Board of Directors or advisory committees; GlaxoSmithKline: Membership on an entity's Board of Directors or advisory committees; Novartis: Honoraria; Agios/Servier: Consultancy, Honoraria, Research Funding; Foghorn: Honoraria, Research Funding; Celgene, a Bristol Myers Squibb company: Honoraria, Research Funding. Ferrajoli: Janssen: Other: Advisory Board ; BeiGene: Other: Advisory Board, Research Funding; AstraZeneca: Other: Advisory Board, Research Funding. Jabbour: Amgen, AbbVie, Spectrum, BMS, Takeda, Pfizer, Adaptive, Genentech: Research Funding. Konopleva: Eli Lilly: Patents & Royalties: intellectual property rights, Research Funding; Genentech: Consultancy, Honoraria, Other: grant support, Research Funding; Novartis: Other: research funding pending, Patents & Royalties: intellectual property rights; Sanofi: Other: grant support, Research Funding; Calithera: Other: grant support, Research Funding; Rafael Pharmaceuticals: Other: grant support, Research Funding; Forty Seven: Other: grant support, Research Funding; Stemline Therapeutics: Research Funding; Ablynx: Other: grant support, Research Funding; Agios: Other: grant support, Research Funding; Ascentage: Other: grant support, Research Funding; KisoJi: Research Funding; Reata Pharmaceuticals: Current holder of stock options in a privately-held company, Patents & Royalties: intellectual property rights; F. Hoffmann-La Roche: Consultancy, Honoraria, Other: grant support; Cellectis: Other: grant support; AstraZeneca: Other: grant support, Research Funding; AbbVie: Consultancy, Honoraria, Other: Grant Support, Research Funding. Andreeff: Daiichi-Sankyo: Consultancy, Research Funding; ONO Pharmaceuticals: Research Funding; Medicxi: Consultancy; Karyopharm: Research Funding; Novartis, Cancer UK; Leukemia & Lymphoma Society (LLS), German Research Council; NCI-RDCRN (Rare Disease Clin Network), CLL Foundation; Novartis: Membership on an entity's Board of Directors or advisory committees; Aptose: Consultancy; Oxford Biomedica UK: Research Funding; Glycomimetics: Consultancy; Breast Cancer Research Foundation: Research Funding; Senti-Bio: Consultancy; Amgen: Research Funding; AstraZeneca: Research Funding; Syndax: Consultancy; Reata, Aptose, Eutropics, SentiBio; Chimerix, Oncolyze: Current holder of individual stocks in a privately-held company. Kantarjian: Astra Zeneca: Honoraria; Aptitude Health: Honoraria; Pfizer: Honoraria, Research Funding; Ascentage: Research Funding; Immunogen: Research Funding; Precision Biosciences: Honoraria; Ipsen Pharmaceuticals: Honoraria; KAHR Medical Ltd: Honoraria; Amgen: Honoraria, Research Funding; Astellas Health: Honoraria; Novartis: Honoraria, Research Funding; Jazz: Research Funding; Daiichi-Sankyo: Research Funding; BMS: Research Funding; AbbVie: Honoraria, Research Funding; Taiho Pharmaceutical Canada: Honoraria; NOVA Research: Honoraria. Ravandi: Prelude: Research Funding; Jazz: Honoraria, Research Funding; Taiho: Honoraria, Research Funding; Astex: Honoraria, Research Funding; Xencor: Honoraria, Research Funding; Amgen: Honoraria, Research Funding; Syros Pharmaceuticals: Consultancy, Honoraria, Research Funding; Bristol Myers Squibb: Honoraria, Membership on an entity's Board of Directors or advisory committees, Research Funding; Celgene: Honoraria, Membership on an entity's Board of Directors or advisory committees, Research Funding; Novartis: Honoraria; AstraZeneca: Honoraria; AbbVie: Honoraria, Research Funding; Agios: Honoraria, Research Funding. Alvarado: Daiichi-Sankyo: Research Funding; MEI Pharma: Research Funding; Astex Pharmaceuticals: Research Funding; Jazz Pharmaceuticals: Research Funding; CytomX Therapeutics: Consultancy; FibroGen: Research Funding; BerGenBio: Research Funding; Sun Pharma: Consultancy, Research Funding. OffLabel Disclosure: To determine the safety and efficacy of CPX-351 in combination with GO in patients with R/R AML and post-HMA failure HR-MDS.
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Ben-Zacharia, Aliza, Meagan Adamson, Allison Boyd, Paula Hardeman, Jennifer Smrtka, Bryan Walker, and Tracy Walker. "Impact of Shared Decision Making on Disease-Modifying Drug Adherence in Multiple Sclerosis." International Journal of MS Care 20, no. 6 (November 1, 2018): 287–97. http://dx.doi.org/10.7224/1537-2073.2017-070.
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CME/CNE Information Activity Available Online: To access the article, post-test, and evaluation online, go to http://www.cmscscholar.org. Target Audience: The target audience for this activity is physicians, physician assistants, nursing professionals, and other health-care providers involved in the management of patients with multiple sclerosis (MS). Learning Objectives: Accreditation Statement: In support of improving patient care, this activity has been planned and implemented by the Consortium of Multiple Sclerosis Centers (CMSC) and Delaware Media Group. CMSC is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team. Physician Credit The CMSC designates this journal-based activity for a maximum of 1.0 AMA PRA Category 1 Credit(s)™. Physicians should claim only the credit commensurate with the extent of their participation in the activity. Nurse Credit The CMSC designates this enduring material for 1.0 contact hours (none in the area of pharmacology). Disclosures: , Editor in Chief of the International Journal of MS Care (IJMSC), has served as Physician Planner for this activity. He has received royalties from Springer Publishing, served on a speakers' bureau for Biogen, and done contracted research for Adamas Pharmaceuticals.Francois Bethoux, MD , has served as reviewer for this activity. She has disclosed no relevant financial relationships.Laurie Scudder, DNP, NP , has received consulting fees from Biogen, Bayer, EMD Serono, Celgene, Novartis, Genentech, and Genzyme and research grants from Biogen and Novartis.Aliza Ben-Zacharia, DNP, ANP, MSCN , has served on speakers' bureaus for Biogen, EMD Serono, Genentech, Novartis, Genzyme, Acorda, Teva, and Mallinckrodt.Meagan Adamson, DNP, FNP-BC, MSCN , has received consulting fees from Genzyme, served on a speakers' bureau/advisory board for EMD Serono, and has been a speaker for Teva Neurosciences and Biogen.Allison Boyd, MPAS, PA-C, MSCS , has disclosed no relevant financial relationships.Paula Hardeman, MPAS, PA-C , has served on advisory boards for Biogen, EMD Serono, Genentech, Novartis, Sanofi Genzyme, and Teva Neuroscience and as a speaker for EMD Serono, Genentech, Mallinckrodt, Sanofi Genzyme, and Teva Neuroscience; she receives salary from Biogen.Jennifer Smrtka, MSN, ARNP-C, MSCN , has received consulting fees from Biogen, EMD Serono, and Sanofi Genzyme and served on speakers' bureaus for Novartis and Biogen.Bryan Walker, MHS, PA-C , has received grant support from EMD Serono, Genzyme, and Teva and personal fees from Acorda, Genentech, Sanofi Genzyme, Mallinckrodt, and Teva, and served on speakers' bureaus for EMD Serono, Acorda, Teva, and Genzyme.Tracy Walker, FNP-C, WOCN, MSCN One peer reviewer for the IJMSC has received consulting fees from and participated on speakers' bureaus for Biogen, Novartis, Genentech, Sanofi Genzyme, and EMD Serono. The other peer reviewer has disclosed no relevant financial relationships. The staff at the IJMSC, CMSC, and Delaware Media Group who are in a position to influence content have disclosed no relevant financial relationships. Note: Financial relationships for some authors may have changed in the interval between listing these disclosures and publication of the article. Method of Participation: Release Date: December 1, 2018 Valid for Credit Through: December 1, 2019 In order to receive CME/CNE credit, participants must: Statements of Credit are awarded upon successful completion of the post-test with a passing score of >70% and the evaluation. There is no fee to participate in this activity. Disclosure of Unlabeled Use: This educational activity may contain discussion of published and/or investigational uses of agents that are not approved by the FDA. CMSC and Delaware Media Group do not recommend the use of any agent outside of the labeled indications. The opinions expressed in the educational activity are those of the faculty and do not necessarily represent the views of CMSC or Delaware Media Group. Disclaimer: Participants have an implied responsibility to use the newly acquired information to enhance patient outcomes and their own professional development. The information presented in this activity is not meant to serve as a guideline for patient management. Any medications, diagnostic procedures, or treatments discussed in this publication should not be used by clinicians or other health-care professionals without first evaluating their patients' conditions, considering possible contraindications or risks, reviewing any applicable manufacturer's product information, and comparing any therapeutic approach with the recommendations of other authorities.
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Short, Nicholas J., Guillermo Montalban-Bravo, Yesid Alvarado, Marina Konopleva, Elias J. Jabbour, Guillermo Garcia-Manero, Musa Yilmaz, et al. "Azacitidine, Venetoclax and Pevonedistat As Frontline Therapy for Patients with Secondary Acute Myeloid Leukemia Who Are Unfit for Intensive Chemotherapy: Results from a Phase I/II Study." Blood 138, Supplement 1 (November 5, 2021): 2349. http://dx.doi.org/10.1182/blood-2021-153682.
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Abstract Background: Pevonedistat is a first-in-class inhibitor of NEDD8-activating enzyme that catalyzes the rate-limiting step of protein neddylation, a critical step in the degradation of cellular proteins that occurs upstream of the proteasome. The combination of azacitidine plus pevonedistat has resulted in high response rates and durable remissions in both myelodysplastic syndrome (MDS) and acute myeloid leukemia (AML), particularly in secondary AML (s-AML). Preclinical studies suggest that pevonedistat synergizes with venetoclax through neutralization of Mcl-1, providing rationale for the triplet combination of azacitidine, venetoclax and pevonedistat. Methods: In this phase I/II study, adult patients (pts) with newly diagnosed s-AML, including pts with therapy-related AML (t-AML) or AML with MDS-related changes, who were unsuitable for intensive chemotherapy were eligible. Pts were required to have a performance status ≤2, total bilirubin ≤ upper limit of normal (ULN), ALT/AST ≤2.5 x ULN, and creatinine clearance ≥30 mL/min. In cycle 1, pts received azacitidine 75 mg/m 2 SC/IV on days 1-7, venetoclax on days 1-28, and pevonedistat 20 mg/m 2 IV on days 1, 3 and 5 on a 28-day schedule. Venetoclax dose ranged from 200mg to 400mg daily during the phase I dose escalation. For cycles 2 and beyond, venetoclax was given on days 1-21. Results: Between 3/2019 and 5/2021, 28 pts were treated (3 pts at venetoclax 200mg daily and 25 pts at 400mg daily). Baseline characteristics are shown in Table 1. The median age was 74 years (range, 61-80), and 12 pts (43%) were ≥75 years of age. The study population was enriched with pts with poor-risk features, including 19 pts (68%) with adverse-risk cytogenetics, 14 (50%) with prior hypomethylating (HMA) or chemotherapy exposure for preceding hematologic malignancy, and 8 (29%) with TP53 mutation. The overall response rate (CR+CRi+MLFS) was 71%, and the CR+CRi rate was 64%. Thirteen pts (46%) achieved CR as best response, 5 (18%) achieved CRi, and 2 (7%) achieved MLFS. Among the 18 pts who achieved CR/CRi, 8 (44%) achieved MRD negativity by multiparameter flow cytometry. Responses were observed across subgroups, including in 8/14 pts (57%) with prior HMA/chemotherapy exposure, 6/8 pts (75%) with TP53 mutation, 12/19 pts (63%) with poor-risk cytogenetics, and 8/9 pts (89%) without non-poor-risk cytogenetics. With a median follow-up of 13.4 months (range 0.4 to 26.3+ months), the median overall survival (OS) was 8.2 months, and the median relapse-free survival was 7.5 months (Figure 1). The median OS for pts with poor-risk and non-poor cytogenetics was 7.9 and 18.0 months, respectively; for pts with and without prior HMA/chemotherapy exposure was 6.2 and 8.9 months, respectively; and for pts with inv(3) AML, TP53-mutated AML, and non-inv(3)/non-TP53-mutated AML was 3.8, 8.9, and 18.0 months, respectively. Four pts (14% of the entire cohort, 20% of responding pts) proceed to hematopoietic stem cell transplantation (HSCT), 3 of whom are still alive and 1 with inv(3) who relapsed post-HSCT and died from progressive AML. The combination was overall well-tolerated with myelosuppression as expected with the combination of HMA plus venetoclax in AML. The median number of cycles received was 2 (range, 1-13 cycles). Non-hematologic grade ≥3 adverse events occurring in ≥2 pts included infection or neutropenic fever in 18 pts (61%), hypophosphatemia in 8 pts (29%), hyperglycemia, hyperbilirubinemia and ALT/AST elevation in 3 pts each (11%), and pneumonitis, acute kidney injury, hypokalemia and vomiting in 2 pts each (7%). One pt developed multiorgan failure on cycle 1, day 1 of therapy, with transaminase elevation, hyperbilirubinemia, renal failure and hyperferritinemia; this pt recovered with holding therapy and supportive care. Hypophosphatemia, which has previously been reported with pevonedistat, was easily managed with oral or intravenous phosphorus supplementation. The 4-week and 8-week mortality rates were 7% and 14%, respectively. Conclusions: The combination of azacitidine, venetoclax and pevonedistat was safe and effective in a very poor-risk population of pts with s-AML, half of whom had prior HMA or chemotherapy exposure for antecedent hematologic malignancy. A randomized study evaluating azacitidine and venetoclax ± pevonedistat (NCT04266795) is ongoing and will help to clarify the potential role of pevonedistat in the frontline treatment of AML. Figure 1 Figure 1. Disclosures Short: AstraZeneca: Consultancy; Jazz Pharmaceuticals: Consultancy; NGMBio: Consultancy; Astellas: Research Funding; Novartis: Honoraria; Takeda Oncology: Consultancy, Research Funding; Amgen: Consultancy, Honoraria. Alvarado: Daiichi-Sankyo: Research Funding; Jazz Pharmaceuticals: Research Funding; FibroGen: Research Funding; BerGenBio: Research Funding; MEI Pharma: Research Funding; Sun Pharma: Consultancy, Research Funding; CytomX Therapeutics: Consultancy; Astex Pharmaceuticals: Research Funding. Konopleva: KisoJi: Research Funding; Ascentage: Other: grant support, Research Funding; AstraZeneca: Other: grant support, Research Funding; Agios: Other: grant support, Research Funding; Ablynx: Other: grant support, Research Funding; Cellectis: Other: grant support; Forty Seven: Other: grant support, Research Funding; AbbVie: Consultancy, Honoraria, Other: Grant Support, Research Funding; Rafael Pharmaceuticals: Other: grant support, Research Funding; Eli Lilly: Patents & Royalties: intellectual property rights, Research Funding; Calithera: Other: grant support, Research Funding; Sanofi: Other: grant support, Research Funding; Stemline Therapeutics: Research Funding; F. Hoffmann-La Roche: Consultancy, Honoraria, Other: grant support; Reata Pharmaceuticals: Current holder of stock options in a privately-held company, Patents & Royalties: intellectual property rights; Genentech: Consultancy, Honoraria, Other: grant support, Research Funding; Novartis: Other: research funding pending, Patents & Royalties: intellectual property rights. Jabbour: Amgen, AbbVie, Spectrum, BMS, Takeda, Pfizer, Adaptive, Genentech: Research Funding. Yilmaz: Pfizer: Research Funding; Daiichi-Sankyo: Research Funding. Jain: Genentech: Honoraria, Research Funding; Cellectis: Honoraria, Research Funding; Precision Biosciences: Honoraria, Research Funding; ADC Therapeutics: Honoraria, Research Funding; Pfizer: Research Funding; Adaptive Biotechnologies: Honoraria, Research Funding; Bristol Myers Squibb: Honoraria, Research Funding; Aprea Therapeutics: Research Funding; Janssen: Honoraria; Incyte: Research Funding; Servier: Honoraria, Research Funding; AstraZeneca: Honoraria, Research Funding; Fate Therapeutics: Research Funding; Beigene: Honoraria; TG Therapeutics: Honoraria; Pharmacyclics: Research Funding; AbbVie: Honoraria, Research Funding. Borthakur: Novartis: Consultancy, Membership on an entity's Board of Directors or advisory committees; Ryvu: Research Funding; ArgenX: Membership on an entity's Board of Directors or advisory committees; Takeda: Membership on an entity's Board of Directors or advisory committees; Astex: Research Funding; University of Texas MD Anderson Cancer Center: Current Employment; GSK: Consultancy; Protagonist: Consultancy. DiNardo: ImmuneOnc: Honoraria, Research Funding; Notable Labs: Current holder of stock options in a privately-held company, Membership on an entity's Board of Directors or advisory committees; Foghorn: Honoraria, Research Funding; Forma: Honoraria, Research Funding; Bristol Myers Squibb: Honoraria, Research Funding; GlaxoSmithKline: Membership on an entity's Board of Directors or advisory committees; Takeda: Honoraria; Novartis: Honoraria; Agios/Servier: Consultancy, Honoraria, Research Funding; AbbVie: Consultancy, Research Funding; Celgene, a Bristol Myers Squibb company: Honoraria, Research Funding. Daver: Astellas: Consultancy, Research Funding; Bristol Myers Squibb: Consultancy, Research Funding; Sevier: Consultancy, Research Funding; Glycomimetics: Research Funding; Gilead Sciences, Inc.: Consultancy, Research Funding; Pfizer: Consultancy, Research Funding; Genentech: Consultancy, Research Funding; FATE Therapeutics: Research Funding; Amgen: Consultancy, Research Funding; Abbvie: Consultancy, Research Funding; Trovagene: Consultancy, Research Funding; Hanmi: Research Funding; Novimmune: Research Funding; Daiichi Sankyo: Consultancy, Research Funding; Trillium: Consultancy, Research Funding; ImmunoGen: Consultancy, Research Funding; Novartis: Consultancy; Jazz Pharmaceuticals: Consultancy, Other: Data Monitoring Committee member; Dava Oncology (Arog): Consultancy; Celgene: Consultancy; Syndax: Consultancy; Shattuck Labs: Consultancy; Agios: Consultancy; Kite Pharmaceuticals: Consultancy; SOBI: Consultancy; STAR Therapeutics: Consultancy; Karyopharm: Research Funding; Newave: Research Funding. Issa: Syndax Pharmaceuticals: Research Funding; Novartis: Consultancy, Research Funding; Kura Oncology: Consultancy, Research Funding. Pemmaraju: MustangBio: Consultancy, Other; ASH Communications Committee: Membership on an entity's Board of Directors or advisory committees; Aptitude Health: Consultancy; Samus: Other, Research Funding; Plexxicon: Other, Research Funding; Sager Strong Foundation: Other; CareDx, Inc.: Consultancy; Cellectis S.A. ADR: Other, Research Funding; Daiichi Sankyo, Inc.: Other, Research Funding; Dan's House of Hope: Membership on an entity's Board of Directors or advisory committees; HemOnc Times/Oncology Times: Membership on an entity's Board of Directors or advisory committees; ASCO Leukemia Advisory Panel: Membership on an entity's Board of Directors or advisory committees; Abbvie Pharmaceuticals: Consultancy, Membership on an entity's Board of Directors or advisory committees, Other, Research Funding; Springer Science + Business Media: Other; Pacylex Pharmaceuticals: Consultancy; Celgene Corporation: Consultancy; Roche Diagnostics: Consultancy; DAVA Oncology: Consultancy; Stemline Therapeutics, Inc.: Consultancy, Membership on an entity's Board of Directors or advisory committees, Other, Research Funding; LFB Biotechnologies: Consultancy; Novartis Pharmaceuticals: Consultancy, Other: Research Support, Research Funding; Incyte: Consultancy; Affymetrix: Consultancy, Research Funding; Protagonist Therapeutics, Inc.: Consultancy; Clearview Healthcare Partners: Consultancy; Blueprint Medicines: Consultancy; Bristol-Myers Squibb Co.: Consultancy; ImmunoGen, Inc: Consultancy. Sasaki: Daiichi-Sankyo: Membership on an entity's Board of Directors or advisory committees; Pfizer: Membership on an entity's Board of Directors or advisory committees; Novartis: Consultancy, Research Funding. Ravandi: AstraZeneca: Honoraria; Jazz: Honoraria, Research Funding; Taiho: Honoraria, Research Funding; Amgen: Honoraria, Research Funding; Agios: Honoraria, Research Funding; Bristol Myers Squibb: Honoraria, Membership on an entity's Board of Directors or advisory committees, Research Funding; AbbVie: Honoraria, Research Funding; Astex: Honoraria, Research Funding; Syros Pharmaceuticals: Consultancy, Honoraria, Research Funding; Celgene: Honoraria, Membership on an entity's Board of Directors or advisory committees, Research Funding; Xencor: Honoraria, Research Funding; Novartis: Honoraria; Prelude: Research Funding. Kadia: Genfleet: Other; Cure: Speakers Bureau; Genentech: Consultancy, Other: Grant/research support; Amgen: Other: Grant/research support; Dalichi Sankyo: Consultancy; Jazz: Consultancy; Novartis: Consultancy; Liberum: Consultancy; Aglos: Consultancy; Pfizer: Consultancy, Other; AbbVie: Consultancy, Other: Grant/research support; Pulmotech: Other; BMS: Other: Grant/research support; Astellas: Other; Sanofi-Aventis: Consultancy; AstraZeneca: Other; Cellonkos: Other; Ascentage: Other. Andreeff: Breast Cancer Research Foundation: Research Funding; Aptose: Consultancy; Daiichi-Sankyo: Consultancy, Research Funding; Karyopharm: Research Funding; Novartis, Cancer UK; Leukemia & Lymphoma Society (LLS), German Research Council; NCI-RDCRN (Rare Disease Clin Network), CLL Foundation; Novartis: Membership on an entity's Board of Directors or advisory committees; Glycomimetics: Consultancy; Senti-Bio: Consultancy; Oxford Biomedica UK: Research Funding; Syndax: Consultancy; AstraZeneca: Research Funding; ONO Pharmaceuticals: Research Funding; Amgen: Research Funding; Reata, Aptose, Eutropics, SentiBio; Chimerix, Oncolyze: Current holder of individual stocks in a privately-held company; Medicxi: Consultancy. Bose: Pfizer: Research Funding; Constellation Pharmaceuticals: Research Funding; Novartis: Honoraria; Sierra Oncology: Honoraria; Kartos Therapeutics: Honoraria, Research Funding; Blueprint Medicines: Honoraria, Research Funding; CTI BioPharma: Honoraria, Research Funding; Celgene Corporation: Honoraria, Research Funding; BMS: Honoraria, Research Funding; Incyte Corporation: Honoraria, Research Funding; Astellas: Research Funding; NS Pharma: Research Funding; Promedior: Research Funding. Kantarjian: Ipsen Pharmaceuticals: Honoraria; Amgen: Honoraria, Research Funding; Precision Biosciences: Honoraria; Astellas Health: Honoraria; Astra Zeneca: Honoraria; Immunogen: Research Funding; Daiichi-Sankyo: Research Funding; KAHR Medical Ltd: Honoraria; Aptitude Health: Honoraria; Pfizer: Honoraria, Research Funding; Ascentage: Research Funding; NOVA Research: Honoraria; BMS: Research Funding; Jazz: Research Funding; Novartis: Honoraria, Research Funding; AbbVie: Honoraria, Research Funding; Taiho Pharmaceutical Canada: Honoraria. Cortes: Novartis: Consultancy, Research Funding; Pfizer: Consultancy, Research Funding; Bio-Path Holdings, Inc.: Consultancy, Membership on an entity's Board of Directors or advisory committees; Sun Pharma: Consultancy, Research Funding; Takeda: Consultancy, Research Funding; Bristol Myers Squibb, Daiichi Sankyo, Jazz Pharmaceuticals, Astellas, Novartis, Pfizer, Takeda, BioPath Holdings, Incyte: Consultancy, Research Funding.
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Khanna, Nehal Rishi, Anant Gokarn, Manju Sengar, Ann Rawat, and Usha Thorat. "Use of artificial intelligence (Al) in augmenting prior authorisation process for financial support in hemato-lymphoid malignancies: Joint project of Navya Al and Indian Cancer Society Cancer Cure Fund (ICS-CCF)." Journal of Clinical Oncology 42, no. 16_suppl (June 1, 2024): 11086. http://dx.doi.org/10.1200/jco.2024.42.16_suppl.11086.
Full textAbstract:
11086 Background: Hemato-lymphoid malignancies have a special urgency on time to initiate treatment and prior authorisation has relied on rapid review by domain experts. Since 2011, ICS-CCF has contributed over $32 million to cover the treatment costs of 14,600 underprivileged patients, including hematolymphoid malignancies. A mandate of ICS-CCF for this philanthropic funding is to choose beneficiaries who have a high chance of cure with standard of care. For this, a Due Diligence Team (DDT) of expert oncologists and the Governing Advisory Council (GAC) of ICS-CCF sequentially adjudicate every application. To augment and scale up this process, in Feb 2021, ICS-CCF evaluated and implemented the use of Al for prior-authorizations. Navya Al is a clinically validated Al model that matches clinical data of applicants with available evidence and registry data to predict survival, and generates payor/national guidelines based optimal treatment plans. Since Feb 2021, 80% of applications are adjudicated by Navya Al with a 99% concordance with GAC. Methods: This study was planned to assess the impact of Navya Al on the process of prior authorisation in a cohort of adult and pediatric hemato-lymphoid malignancies. All patients evaluated by Navya AI alone or with DDT from February 2021 to July 2023 were analyzed. Adjudication rates reflecting effort and time savings were calculated as the % of patients for whom Navya Al could make a decision on its own without referring to the DDT for review. Results: Of the 5775 applications reviewed by Navya Al, 2255(39.04%) were hematolymphoid malignancies. 37.16%(838/2255) of patients were pediatric (Age<=15years) and 62.8%(1417/2255) were adults (Age>15 years). Of these 2255, Navya AI alone adjudicated 73.61%(1660/2255) cases and 25.36%(572/2255) were referred to DDT for adjudication. Analysis was done on 2232 cases excluding the 1.01%(23/2255) reapplication cases. Details in table. Conclusions: With Al, only one fourth of beneficiary applications with hematolymphoid malignancies need expert review for prior authorisation. Implementation of AI has potential to save time in the authorization process for philanthropic funding for governmental and non governmental health care schemes. [Table: see text]
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Wyer, Leanna, Abraham Munene, Tatiana Penconek, Shawna Reid, Eddy Lang, Vivian Ewa, Greta Cummings, et al. "A Better Way to Care for Long Term Care (LTC) residents in Times of Medical Urgency: Improving Acute Care transfers for LTC Residents." Canadian Journal of Emergency Nursing 46, no. 1 (May 11, 2023): 2–3. http://dx.doi.org/10.29173/cjen217.
Full textAbstract:
Background: Prior to the pandemic, every day approximately 28 long term care (LTC) residents were transferred to an emergency department (ED) in Alberta. This was placing increasing strain on healthcare resources and potentially negatively impacting the health and wellness of residents (e.g., exposure to iatrogenic harms). Many residents’ conditions could be managed within LTC if appropriate supports were provided. Poor communication between LTC and EDs can also lead to long ED lengths of stay, unnecessary resource utilization, sub-optimal health outcomes, and exposure to iatrogenic harms for LTC residents. Two INTERACT® tools (tools for early identification of acute medical issues) and a new care and referral pathway were implemented to help identify and address changes in health status among LTC residents sooner, improve communication between LTC and ED providers, and reduce unnecessary ED transfers. Methods: Between October 2019 and April 2022, 40 LTC homes and 4 EDs within the Calgary zone implemented the standardized LTC-to-ED care and referral pathway supported by a centralized telephone advice and transfer system for healthcare providers, community paramedics, and two INTERACT® tools (Stop and Watch for healthcare aides; Change in Condition Cards for nursing). Using a randomized stepped-wedge design, the pathway was implemented within 9 cohorts of (4-5) LTC facilities every 3 months, supported by an implementation coach. Three-hour train the trainer implementation sessions were conducted in-person or online with over 325 health practitioners in the enrolled LTC homes using strategies adapted to consider local context and barriers, as well as considering pandemic-related challenges. Evaluation Methods: Evaluation of the intervention involved both qualitative and quantitative methods. The primary study outcome is change in transfers from LTC to ED; secondary (quantitative) outcomes include hospital admissions, utilization of the centralized telephone advice and transfer system, and community paramedic visits. Analysis of these quantitative outcomes utilized negative binomial regression to estimate the incident rate with 95% confidence intervals (per 1000 residents), while adjusting for the different cohorts. The quantitative evaluation also included an economic analysis to determine potential cost savings. Interviews with healthcare providers were conducted to provide context to their experience with the intervention and ways it can be improved. These interviews will be interpreted with the involvement of members of our project resident and family advisory council. Results: Quantitative results demonstrate a reduction in the LTC-to-ED transfer rate [1.70 (95%CI 1.61-1.79) post-intervention) vs 1.91 (95%CI 1.84-2.00) pre-intervention], along with reduction in hospital admission rates [0.94 (95%CI 0.88-1.00) vs 1.08 (95%CI 1.03-1.14)]. There was an increase in utilization of the centralized telephone advice and transfer system [0.18 (95%CI 0.16-0.22) vs. 0.13 (95%CI 0.11-0.16)], but no increase in the number of community paramedic visits [2.05 (95%CI 1.94-2.16) vs 2.50 (95%CI 2.39-2.61)]. Cost and qualitative outcome data is pending. Advice and Lessons Learned: LTC staff education and use of early warning tools for identifying a change in resident health status (INTERACT® tools) and/or utilization of a centralized telephone advice and transfer system may have played a role in reducing ED transfers. We did not observe the expected relationship between community paramedic visits and reduced LTC-to-ED transfers, possibly as a result of the pandemic-related facility outbreak restrictions. Teams should tailor implementation sessions and materials to site specific needs and contexts to help address their unique barriers and facilitators. Partnerships with key stakeholders across the care continuum are essential to ensure adequate support and effective uptake and sustainability of the mutli-faceted change intervention.
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Sejbæk, Tobias, Morten Blaabjerg, Pippi Sprogøe, and Mads Ravnborg. "Reliability and Validity of a Danish Version of the Multiple Sclerosis Neuropsychological Screening Questionnaire." International Journal of MS Care 20, no. 1 (January 1, 2018): 49–54. http://dx.doi.org/10.7224/1537-2073.2017-011.
Full textAbstract:
CME/CNE Information Activity Available Online: To access the article, post-test, and evaluation online, go to http://www.cmscscholar.org. Target Audience: The target audience for this activity is physicians, physician assistants, nursing professionals, and other health-care providers involved in the management of patients with multiple sclerosis (MS). Learning Objectives: Accreditation Statement: In support of improving patient care, this activity has been planned and implemented by the Consortium of Multiple Sclerosis Centers (CMSC) and Delaware Media Group. CMSC is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team. Physician Credit The CMSC designates this journal-based activity for a maximum of .75 AMA PRA Category 1 Credit(s)™. Physicians should claim only the credit commensurate with the extent of their participation in the activity. Nurse Credit The CMSC designates this enduring material for .75 contact hours. Disclosures: Editor in Chief of the International Journal of MS Care (IJMSC), has served as Physician Planner for this activity. He has received royalties from Springer Publishing; has received consulting fees from Ipsen; and has performed contracted research for Biogen, Adamas Pharmaceuticals, and Acorda Therapeutics.Francois Bethoux, MD, has served as reviewer for this activity. She has disclosed no relevant financial relationships.Laurie Scudder, DNP, NP, has received honoraria from lectures at a Biogen symposium; has performed contracted research as principal investigator of a phase 4 trial with support from Biogen; has served on the scientific advisory boards of Novartis, Biogen, Teva, Merck, and Roche; and has received travel funding or speaker honoraria from Biogen, Teva, and Novartis.Tobias Sejbæk, MD, has received honoraria from lectures at a symposium organized by Biogen Denmark.Morten Blaabjerg, MD, PhD, has disclosed no relevant financial relationships.Pippi Sprogøe, MSc, has performed contracted research as principal investigator of phase 3 and 4 studies by Biogen, Roche, Novartis, and Genzyme.Mads Ravnborg, MD, DMsc, The peer reviewers for the IJMSC have disclosed no relevant financial relationships. The staff at the IJMSC, CMSC, and Delaware Media Group who are in a position to influence content have disclosed no relevant financial relationships. Note: Disclosures listed for authors are those applicable at the time of their work on this project and within the previous 12 months. Method of Participation: Release Date: February 1, 2018 Valid for Credit Through: February 1, 2019 In order to receive CME/CNE credit, participants must: Statements of Credit are awarded upon successful completion of the post-test with a passing score of >70% and the evaluation. There is no fee to participate in this activity. Disclosure of Unlabeled Use: This educational activity may contain discussion of published and/or investigational uses of agents that are not approved by the FDA. CMSC and Delaware Media Group do not recommend the use of any agent outside of the labeled indications. The opinions expressed in the educational activity are those of the faculty and do not necessarily represent the views of CMSC or Delaware Media Group. Disclaimer: Participants have an implied responsibility to use the newly acquired information to enhance patient outcomes and their own professional development. The information presented in this activity is not meant to serve as a guideline for patient management. Any medications, diagnostic procedures, or treatments discussed in this publication should not be used by clinicians or other health-care professionals without first evaluating their patients' conditions, considering possible contraindications or risks, reviewing any applicable manufacturer's product information, and comparing any therapeutic approach with the recommendations of other authorities.
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Gutman, Josef Maxwell, Kelvin Kim, Ran Schwarzkopf, and Ilya Kister. "Total Hip and Knee Arthroplasty in Patients with Multiple Sclerosis." International Journal of MS Care 20, no. 5 (September 1, 2018): 244–50. http://dx.doi.org/10.7224/1537-2073.2017-093.
Full textAbstract:
CME/CNE Information Activity Available Online: To access the article, post-test, and evaluation online, go to http://www.cmscscholar.org. Target Audience: The target audience for this activity is physicians, physician assistants, nursing professionals, and other health-care providers involved in the management of patients with multiple sclerosis (MS). Learning Objectives: Accreditation Statement: In support of improving patient care, this activity has been planned and implemented by the Consortium of Multiple Sclerosis Centers (CMSC) and Delaware Media Group. CMSC is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team. Physician Credit The CMSC designates this journal-based activity for a maximum of 0.5 AMA PRA Category 1 Credit(s)™. Physicians should claim only the credit commensurate with the extent of their participation in the activity. Nurse Credit The CMSC designates this enduring material for 0.5 contact hours (none in the area of pharmacology). Disclosures: Editor in Chief of the International Journal of MS Care (IJMSC), has served as Physician Planner for this activity. He has disclosed no relevant financial relationships.Francois Bethoux, MD, has served as reviewer for this activity. She has disclosed no relevant financial relationships.Laurie Scudder, DNP, NP, has disclosed no relevant financial relationships.Josef Maxwell Gutman, MD, has disclosed no relevant financial relationships.Kelvin Kim, BA, has received consulting fees from Smith & Nephew and Intelijoint that are unrelated to this work.Ran Schwarzkopf, MD, MSc, served on the scientific advisory boards for Biogen and Genentech and received research support from the Guthy-Jackson Charitable Foundation, National Multiple Sclerosis Society, Biogen, EMD Serono, Genzyme, and Novartis.Ilya Kister, MD, One peer reviewer for the IJMSC has received consulting fees from Biogen, Sanofi Genzyme, Ibsen Pharmaceutical, and Teva and has done contracted research for Astellas, Merck, and Biogen. The other peer reviewer has disclosed no relevant financial relationships. The staff at the IJMSC, CMSC, and Delaware Media Group who are in a position to influence content have disclosed no relevant financial relationships. Note: Disclosures listed for authors are those applicable at the time of their work on this project and within the previous 12 months. Method of Participation: Release Date: October 1, 2018 Valid for Credit Through: October 1, 2019 In order to receive CME/CNE credit, participants must: Statements of Credit are awarded upon successful completion of the post-test with a passing score of >70% and the evaluation. There is no fee to participate in this activity. Disclosure of Unlabeled Use: This educational activity may contain discussion of published and/or investigational uses of agents that are not approved by the FDA. CMSC and Delaware Media Group do not recommend the use of any agent outside of the labeled indications. The opinions expressed in the educational activity are those of the faculty and do not necessarily represent the views of CMSC or Delaware Media Group. Disclaimer: Participants have an implied responsibility to use the newly acquired information to enhance patient outcomes and their own professional development. The information presented in this activity is not meant to serve as a guideline for patient management. Any medications, diagnostic procedures, or treatments discussed in this publication should not be used by clinicians or other health-care professionals without first evaluating their patients' conditions, considering possible contraindications or risks, reviewing any applicable manufacturer's product information, and comparing any therapeutic approach with the recommendations of other authorities.
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Sullivan, Amy, Alexa Kane, Gianna Valentic, and Mary Rensel. "Recommendations to Address the Unique Clinical and Psychological Needs of Transgender Persons Living With Multiple Sclerosis." International Journal of MS Care 24, no. 1 (January 1, 2022): 35–40. http://dx.doi.org/10.7224/1537-2073.2021-066.
Full textAbstract:
CE Information Activity Available Online: To access the article and evaluation online, go to https://www.highmarksce.com/mscare. Target Audience: The target audience for this activity is physicians, advanced practice clinicians, nursing professionals, pharmacists, and other health care providers involved in the management of patients with multiple sclerosis (MS). Learning Objectives: Identify unique clinical and psychological care needs of transgender (TGD) patients with MS Describe best practice recommendations for the care of the TGD person living with MS Accreditation Statement: In support of improving patient care, this activity has been planned and implemented by the Consortium of Multiple Sclerosis Centers (CMSC) and MJH Life Sciences®. The CMSC is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the health care team. Physician Credit: The CMSC designates this journal-based activity for a maximum of .5 AMA PRA Category 1 Credit(s)™. Physicians should claim only the credit commensurate with the extent of their participation in the activity. Nurse Credit: The CMSC designates this enduring material for .5 contact hours of nursing continuing professional development (NCPD) (none in the area of pharmacology). Disclosures: Francois Bethoux, MD, editor in chief of the International Journal of MS Care (IJMSC), has served as a planner for this activity. He has disclosed relationships with Springer Publishing (royalty); Qr8 (receipt of intellectual property rights/patent holder); Biogen (receipt of intellectual property rights/patent holder, speakers’ bureau); MedRhythms (consulting fee, contracted research); GW Pharmaceuticals, Genentech, Helius Medical Technologies, Osmotica, Ipsen (consulting fee); and Adamas Pharmaceuticals (contracted research). Alissa Mary Willis, MD, associate editor of IJMSC, has disclosed relationships with Greenwich Biosciences (consulting fee); Alexion (consulting fee, speakers’ bureau, contracted research); Genentech (consulting fee, speakers’ bureau); and Biogen, Bristol Myers Squibb (speakers’ bureau). Authors: Amy Sullivan, PsyD, has disclosed the following the following financial relationships: Consulting and Speakers Bureau: Novartis, Biogen, Bristol Myers Squibb and Genentech. Alexa Kane, PsyD, has disclosed no relevant financial relationships. Gianna Valentic has disclosed no relevant financial relationships. Mary Rensel, MD, has disclosed the following financial relationships: Advisory Board: EMD Serono and Biogen; Research Support: Medimmune, Novartis and Genentech; Speaker’s Bureau: Novartis, Genzyme, and Biogen. One peer reviewer for IJMSC has disclosed the following financial relationships: Consultant: Alexion, EMD Serono, Biogen, Novartis, Roche Genentech and Sanofi Genzyme; Research Support: Biogen, Novartis and Roche Genentech. Two peer reviewers disclosed no relevant financial relationships. The staff at IJMSC, CMSC, and MJH Life Sciences® who are in a position to influence content have disclosed no relevant financial relationships. Laurie Scudder, DNP, NP, continuing education director CMSC, has served as a planner and reviewer for this activity. She has disclosed no relevant financial relationships. Note : Financial relationships may have changed in the interval between listing these disclosures and publication of the article. Method of Participation: Release Date: February 1, 2022; Valid for Credit Through: February 1, 2023 In order to receive CME/CNE credit, participants must: 1) Review the continuing education information, including learning objectives and author disclosures.2) Study the educational content.3) Complete the evaluation, which is available at https://www.highmarksce.com/mscare. Statements of Credit are awarded upon successful completion of the evaluation. There is no fee to participate in this activity. Disclosure of Unlabeled Use: This educational activity may contain discussion of published and/or investigational uses of agents that are not approved by the FDA. The CMSC and MJH Life Sciences® do not recommend the use of any agent outside of the labeled indications. The opinions expressed in the educational activity are those of the faculty and do not necessarily represent the views of the CMSC or MJH Life Sciences®. Disclaimer: Participants have an implied responsibility to use the newly acquired information to enhance patient outcomes and their own professional development. The information presented in this activity is not meant to serve as a guideline for patient management. Any medications, diagnostic procedures, or treatments discussed in this publication should not be used by clinicians or other health care professionals without first evaluating their patients’ conditions, considering possible contraindications or risks, reviewing any applicable manufacturer’s product information, and comparing any therapeutic approach with the recommendations of other authorities.