Готові списки джерел за темами / Patient-reported outcomes and experiences

Добірка наукової літератури з теми "Patient-reported outcomes and experiences"

Автор: Grafiati

Опубліковано: 10 грудня 2022

Оновлено: 28 січня 2023

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Статті в журналах з теми "Patient-reported outcomes and experiences"

Weldring, Theresa, and Sheree M. S. Smith. "Article Commentary: Patient-Reported Outcomes (PROs) and Patient-Reported Outcome Measures (PROMs)." Health Services Insights 6 (January 2013): HSI.S11093. http://dx.doi.org/10.4137/hsi.s11093.

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In recent years, there has been an increased focus on placing patients at the center of health care research and evaluating clinical care in order to improve their experience and ensure that research is both robust and of maximum value for the use of medicinal products, therapy, or health services. This paper provides an overview of patients’ involvement in clinical research and service evaluation along with its benefits and limitations. We describe and discuss patient-reported outcomes (PROs) and patient-reported outcome measures (PROMs), including the trends in current research. Both the patient-reported experiences measures (PREMs) and patient and public involvement (PPI) initiative for including patients in the research processes are also outlined. PROs provide reports from patients about their own health, quality of life, or functional status associated with the health care or treatment they have received. PROMs are tools and/or instruments used to report PROs. Patient report experiences through the use of PREMs, such as satisfaction scales, providing insight into the patients’ experience with their care or a health service. There is increasing international attention regarding the use of PREMS as a quality indicator of patient care and safety. This reflects the ongoing health service commitment of involving patients and the public within the wider context of the development and evaluation of health care service delivery and quality improvement.

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Raymond, Martha, and Margaret-Ann Simonetta. "Patient-reported outcomes: The anal cancer patient lived experience." Journal of Clinical Oncology 40, no. 4_suppl (February 1, 2022): 2. http://dx.doi.org/10.1200/jco.2022.40.4_suppl.002.

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2 Background: Anal Cancer incidence and deaths from the disease have been rising in the United States for the past two decades. Data published in the Journal of the National Cancer Institute (11/19/2019) indicate from 2001 to 2015, anal cancer overall incidence increased by 2.7% per year and deaths rose by 3.1 % each year. This data indicates that anal cancer may be one of the fastest growing causes of cancer incidence and mortality. Now, especially with data indicating the rise in incidence rate, it is imperative that the anal cancer patient lived experience be better understood, including gaps in awareness and prevention education that may lead to earlier diagnosis. The Raymond Foundation in partnership with the anal cancer patient community is amplifying the patient voice by facilitating a series of impactful roundtable conversations to underscore the patient lived experience. Methods: From March–August 2021, the Raymond Foundation convened virtual roundtable conversations and individual interviews with 171 anal cancer patients and survivors. Overarching themes from our conversations included: Barriers to earlier diagnosis and awareness, Frustration and anger by the lack of new treatment protocols, Quality of life after diagnosis, including daily distress levels leading to allostatic load. Results: 94% of patients/survivors reported lack of anal cancer awareness and prevention education that may have led to a later stage diagnosis; 93% reported feeling stigmatized with a marked decrease in quality of life post diagnosis; 90% reported feeling embarrassed when discussing their diagnosis with family and friends; 86% reported frustration and anger by the lack of new treatment options; Anxiety (81%), Fear (78%) Depression (73%) were common daily distress concerns; Reported physical effects of the disease and treatment, include Radiation Proctitis (71%) Fecal Incontinence (68%) Urinary Incontinence (65%). Less than half (44%) of patients felt empowered and comfortable advocating for themselves regarding their healthcare and treatment decisions. Conclusions: Anal cancer patients have many unmet needs–both physical and psycho-social. Their voices and lived experiences provide a roadmap to better understand these unmet needs. Based on our patient-reported outcomes research, we will continue our outreach and partnership with the anal cancer community to provide patient support, education and awareness programs and campaigns that help meet the needs of the anal cancer patient community.

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Corcoran, Stacie, Bridgette Thom, and Katie Decker. "Electronic patient-reported outcomes (ePRO) in survivorship practice." Journal of Clinical Oncology 36, no. 7_suppl (March 1, 2018): 79. http://dx.doi.org/10.1200/jco.2018.36.7_suppl.79.

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79 Background: Use of patient-reported outcomes (PRO) is a well-recognized method of assessing long-term and late effects in cancer survivors. Our institution incorporated PRO in survivorship clinics in 2007, but to improve care delivery and practice efficiency, paper PRO were adapted to an electronic platform (ePRO) in 2017. This presentation describes our transition to ePRO in the survivorship setting: patient, provider, and administrator experiences are highlighted, and evaluation metrics are presented. Methods: Steps to convert PRO from paper to electronic format included collaborating with informatics staff to construct the ePRO; including institution-wide standardized language for demographic questions and symptom assessment (Common Terminology Criteria for Adverse Events); and customizing the ePRO, with input from oncologists and survivorship nurse practitioners. Patients with an institutional portal account receive a notification with the ePRO link 1 week prior to their visit, and patients without an account complete the survey on their appointment day in the waiting room on a tablet. Patients unable or unwilling to complete the ePRO do so on paper. To evaluate the transition to ePRO, we gathered usage data and administered a satisfaction survey to patients and providers. Results: Since ePRO initiation, 295 patients have completed the PRO: 71% on tablet, 19% on paper, and 11% via patient portal (only 34% of patients had portal accounts). Initial survey results suggest both patients and providers are satisfied using ePRO: complete survey data, along with qualitative descriptions of experiences, will be presented. Conclusions: Clinicians reported a positive experience reviewing post-treatment sequelae electronically in advance of the visit, allowing them to better prepare for the encounter. Based on clinician feedback, report modifications are underway, and next steps include adding symptom trends to the report and working with informatics to increase portal enrollment among survivors. We anticipate that as ePRO use becomes more widespread across the institution, greater assessment capability and improved monitoring and management of late-effects will occur, positively impacting outcomes for cancer survivors.

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Coelho, Anabela, Katherine de Bienassis, Niek Klazinga, Susan Santo, Patrícia Frade, Andreia Costa, and Tânia Gaspar. "Mental Health Patient-Reported Outcomes and Experiences Assessment in Portugal." International Journal of Environmental Research and Public Health 19, no. 18 (September 6, 2022): 11153. http://dx.doi.org/10.3390/ijerph191811153.

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Mental ill-health is increasingly recognized by policymakers for its significant human and economic toll. The main objective of this study is to capture patient-reported outcomes and experiences on mental health care in Portugal using methods developed for international benchmarking purposes, such as the OECD Patient-reported Indicators Surveys. The study included 397 participants, 247 (62.2%) women, divided into four age groups: ages 16–24 years, ages 25–44 years, ages 45–65 years, and ages 66 years or older. The data collection procedure and analysis followed the OECD PaRIS Mental Health Working Group 2021 protocol allowing subsequent comparability with data from other OECD member countries. Findings on the WHO-5 Well-Being Index showed that women manifest a lower score in well-being following mental health care services use. This finding may be, at least in part, explained by the study population (mental health services users), including individuals with clinical depression which is more frequently observed in women. In terms of the level of satisfaction with treatment (provided by nurses, doctors, phycologists, etc.) the response “Yes, definitely” varied from 67% of answers regarding “time spent by care providers”, 76.3% “involvement in decisions” to 79.7% regarding “clarity of explanations” and 84.4% regarding the item courtesy and respect. This study shows the feasibility of implementing and using patient-reported metrics (PROM and PREM) in mental health services in Portugal. The study results generate useful clinical information to help meet the expectations and needs of patients, contributing to a continuous improvement of mental health community services.

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Barton, Jennifer L., and Patricia Katz. "The Patient Experience: Patient-Reported Outcomes in Rheumatology." Rheumatic Disease Clinics of North America 42, no. 2 (May 2016): xv—xvi. http://dx.doi.org/10.1016/j.rdc.2016.02.001.

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Tsehaie, Jonathan, Mark J. W. van der Oest, Ralph Poelstra, Ruud W. Selles, Reinier Feitz, Harm P. Slijper, Steven E. R. Hovius, and Jarry T. Porsius. "Positive experience with treatment is associated with better surgical outcome in trapeziometacarpal osteoarthritis." Journal of Hand Surgery (European Volume) 44, no. 7 (June 1, 2019): 714–21. http://dx.doi.org/10.1177/1753193419851777.

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The aim of this study was to investigate the association between patients’ experiences with trapeziometacarpal arthroplasty and treatment outcomes in terms of patient-reported outcome measures, grip and pinch strength. We included 233 patients who received a Weilby procedure for trapeziometacarpal osteoarthritis. Before surgery and 12 months after surgery, patients completed the Michigan Hand Outcomes Questionnaire, and their pinch and grip strengths were measured. At 3 months after surgery, a patient-reported experience measure was completed. Using regression analysis, significantly positive associations were found between the Michigan Hand questionnaire and the patient-reported experience measure, with the strongest significant associations being for patients’ experiences with information provision. No significant associations were found between the patients’ experience and strength outcomes. The results highlight the potential importance of positive experience with the treatment process to improve treatment outcomes in patients undergoing surgery for trapeziometacarpal osteoarthritis. Level of evidence: IV

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Mendlovic, Shlomo, David Roe, Geffen Markusfeld, Jan Mainz, Solvejg Kristensen, and Gil Goldzweig. "Exploring the relation between clinician ratings and patient-reported experience and outcomes." International Journal for Quality in Health Care 34, Supplement_1 (March 31, 2022): ii98—ii104. http://dx.doi.org/10.1093/intqhc/mzac004.

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Abstract Background Patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) are increasingly recognized as important ways for patients to be more actively involved in their treatment and enhance shared decision-making. Objective The current study investigated the associations between PROMs, PREMs and various symptoms measures reported by clinicians and psychiatric patients. Method One hundred and twenty people admitted to a psychiatric hospital completed two PREMs, one PROM (the shortened version of the Manchester Short Assessment of Quality of Life scale) and Effects of Symptoms on Daily Functioning (the Sheehan Disability Scale), the Patient Clinical Global Impression and the Modified Colorado Symptom Index. Their psychiatrists rated them using the Global Assessment of Functioning scale, the Health of the Nation Outcome Scales and the Therapist Clinical Global Impression. Results There was a strong correlation between patient’s evaluation of their quality of life (PROM), experience of their care (PREM) and the overall severity of their condition and their progress. The pattern of correlation between patients’ and clinicians’ measures revealed a three-layer structure representing a continuum from inner experience to external presentation of experiences. Conclusion Together these findings help identify and emphasize various domains of subjective experiences and their relation to external ratings.

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Liu, Jason B., Andrea L. Pusic, Christopher J. Gibbons, Frank G. Opelka, Jill S. Sage, Vanessa M. Thompson, Clifford Y. Ko, Bruce L. Hall, and Larissa K. Temple. "Association of Patient-reported Experiences and Surgical Outcomes Among Group Practices." Annals of Surgery 271, no. 3 (March 2020): 475–83. http://dx.doi.org/10.1097/sla.0000000000003034.

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Wang, Xuanji, Alexandra Mathews, Anne Erickson, Teresa Veselack, Eleanor Bucholz, Darl Vandevender, Constantine Godellas, and Faaiza Vaince. "Single Center Oncoplastic Experience and Patient Satisfaction Reported via Patient Reported Outcomes." Plastic and Reconstructive Surgery - Global Open 10, no. 5 (May 2022): e4336. http://dx.doi.org/10.1097/gox.0000000000004336.

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Larsen, Emily N., Joshua Byrnes, Nicole Marsh, and Claire M. Rickard. "Patient-reported outcome and experience measures for peripheral venous catheters: a scoping review protocol." British Journal of Nursing 30, no. 19 (October 28, 2021): S30—S35. http://dx.doi.org/10.12968/bjon.2021.30.19.s30.

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Purpose: The purpose of this scoping review is to conduct a systematic search and establish the current state of evidence for tools and instruments used to measure self-reported outcomes and experiences, including satisfaction scores, specifically for peripheral venous access devices (PVADs). Methods: A systematic search of the literature will be conducted using medical databases including: MEDLINE (Ovid); CINAHL (EbscoHost); PubMed (NCBI); and Scopus (Elsevier); Google (Scholar); and the Cochrane Central Register of Controlled Trials. Experimental, and observational studies, published in English, after 1990 will be eligible for inclusion if they: consist of (i) a survey, instrument or tool that is designed to (ii) collect outcome, experience and/or satisfaction data, relating to PVAD insertion, care, maintenance and/or removal, among (iii) adult and paediatric participants. Conclusions: PVAD-specific patient-reported outcome and experience measures are necessary for researchers, clinicians and policy decision makers to explore more thoroughly the quality of PVAD care provided, and further inform health economic analyses in the context of quality improvement interventions for vascular access devices. This scoping review will establish the existence—or paucity—of instruments to measure these selfreported outcomes and experiences of PVADs, in order to guide value-based healthcare delivery into the future.

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Дисертації з теми "Patient-reported outcomes and experiences"

Acum, Michelle. "End of pathway cleft surgery : exploring the patient-reported outcomes and young people's decision making experiences." Thesis, University of East Anglia, 2018. https://ueaeprints.uea.ac.uk/68908/.

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Objective: Literature exploring how young people (YP) experience cleft surgery at the end of the treatment pathway is limited, both in terms of their reported outcomes and their experience of deciding whether to undergo surgery. This thesis aimed to add to the cleft field by reviewing the patient-reported outcomes (PROs) of end of pathway cleft surgery and exploring YP’s experiences of deciding whether to undergo orthognathic surgery (OS; an end of pathway cleft surgery). Design: A systematic literature search identified studies measuring the PROs of undergoing end of pathway cleft surgery. To explore OS decision making experiences a qualitative design was employed and interviews conducted with twelve YP. Results: The 22 studies measuring PROs varied in methodological quality; most were small scale and none utilised a measure validated in the cleft population, meaning it is hard to draw conclusions about end of pathway cleft surgery from the patient perspective. Thematic Analysis of YP’s accounts resulted in the development of four themes to depict YP’s decision making experiences: 1) Awareness of difference, 2) Committing to the process, 3) Others facilitating decision making and 4) Responsibility on my shoulders. Conclusions: This thesis reveals the difficulty in determining PROs of end of pathway cleft surgery due to the methodological challenges and the heterogeneity of what, how and when outcomes are measured. It demonstrates the contextual, social and personal complexities YP experienced in the process of deciding about OS during a period of developmental transition. Theoretical, clinical and research implications are discussed.

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Jayakumar, Prakash. "Patient reported outcome (PRO) measurement of disability in orthopaedic trauma to the upper extremity." Thesis, University of Oxford, 2017. https://ora.ox.ac.uk/objects/uuid:4f39d510-c902-4112-8806-4eefb9bf25d3.

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Patient reported outcome (PRO) measurement of disability is integral to a patient-centered approach to health care and gauging the biopsychosocial impact of health conditions from the patient's perspective. This thesis investigates disability after proximal humerus, elbow and distal radius fractures; conditions that constitute a major burden in musculoskeletal health care and a substantial impact on health-related quality of life (HrQoL). Disability is defined by the World Health Organisation (WHO) International Classification of Disability, Functioning and Health (ICF) as âa multi-dimensional construct involving a dynamic interaction between impairment, activity limitations and participation restrictions, that are influenced by contextual factors'. This international, consensus-based framework acts as a guide for the application of outcome measures in performing scientific research. The WHO ICF also considers other patient perspectives on health and health care systems, including patient experience and patient activation within the contextual factors component. Patient experience encompasses aspects such as satisfaction, expectation management and confidence with care, and is measured using a variety of scales and questionnaires. Patient activation relates to 'the knowledge, skills and confidence a person has in managing their own health and health care'. This concept is quantified using patient activation measures (PAMs). The overarching goal of this thesis is to identify the most influential factors predicting disability after proximal humerus, elbow and distal radius fractures. This work also aimed to define the relationship between disability, experience and activation to inform the development of a patient-centred approach to managing these challenging injuries. The first systematic review highlights the dominance of psychosocial factors in influencing disability associated with a range of upper extremity conditions. Few studies have assessed this relationship in specific trauma populations. The second review underlines the paucity of upper extremity PRO measures incorporating fracture populations in their original development. It also reports the highly variable quality of initial studies introducing these measures. The final review demonstrates the superior measurement properties of computer adaptive tests (CATs), a contemporary form of PRO measurement, over fixed-scale instruments. Few studies apply CATs in trauma and few have been performed outside the U.S. These reviews collectively informed the selection of PRO measures for the experimental studies in this thesis. Firstly, a pilot study establishes a methodology for addressing the key objectives and the feasibility of using a web-based platform for measuring patient outcomes. Strong correlation between PROMIS Physical function CAT, a computer adaptive measure of physical function, and the Quick Disabilities of the Arm, Shoulder and Hand (QuickDASH), a region-specific, fixed scale is observed. The core experiment (n=734) expands upon this work and demonstrates correlations between a range of generic and region-specific measures in an upper extremity trauma population. Disability is shown to correlate with satisfaction, and the strength of this correlation increases over time. Applying PRO measures of disability in populations with shoulder, elbow and wrist fractures show that self-efficacy (i.e. coping ability) within 6 weeks of injury was the strongest predictor of medium-term disability at 6-9 months. In proximal humerus and elbow fractures, kinesiophobia (i.e. fear of movement) within a week of injury was also a strong predictor of disability. The final study concludes that greater patient activation is associated with greater health-related and experiential outcomes. However, psychosocial factors including self-efficacy, superseded activation in predicting disability and satisfaction. This thesis contributes evidence for musculoskeletal health care professionals (HCPs) to consider specific psychosocial factors, such as coping abilities, and patient activation early in the recovery process to improve disability following these injuries.

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Crocker, Helen. "Coeliac disease : health-related quality of life and patients' experiences of health care services." Thesis, University of Oxford, 2016. http://ora.ox.ac.uk/objects/uuid:7758bef9-d019-4b9f-b992-d7bf453ad427.

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Coeliac disease (CD) is a chronic gastrointestinal condition, the only treatment for which is a gluten-free diet (GFD). Following a GFD is restrictive, burdensome, and can impact health-related quality of life (HRQOL). People with CD can experience long delays to diagnosis and evidence suggests large variations in follow-up care, but the relationship between health care experiences and HRQOL is unknown. The main aim of this research was to develop a patient-reported outcome measure and patient experience questionnaire, and use these to investigate the relationship between adults' experiences of health care services and HRQOL in CD. The questionnaires, named the Coeliac Disease Assessment Questionnaire (CDAQ) and the Coeliac Disease Patient Experience Questionnaire (CD-PEQ), were developed following qualitative interviews with adults with CD, and refined with input from experts, and cognitive interviews. The CDAQ was also subject to a translatability assessment to assess its linguistic and cultural translatability, and a cross-sectional survey to assist with item reduction and scale generation. Members of Coeliac UK (n=267) completed the CDAQ and CD-PEQ, together with the SF-36v2 and demographic questions as part of a postal survey. Psychological health, vitality, general health, and dietary burden were found to have the greatest impact on HRQOL, with physical health and social isolation the least affected. HRQOL was found to have a strong correlation with patients' experiences of health care services. Aspects most strongly related were: the provision of information; communication with HCPs; difficulty obtaining prescriptions; and GPs' knowledge. This research has identified aspects of health care services that are strongly related to HRQOL in CD. Health care providers are recommended to focus service improvement efforts on these areas. A reliable and valid disease-specific patient-reported outcome measure and patient experience questionnaire have been developed as part of this study. The CDAQ is suitable for use in research studies, including clinical trials, to assess HRQOL in CD.

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Fitzpatrick, Janet M. "Patient-based outcomes : older adults' perceptions of hospital and recovery experiences /." Thesis, National Library of Canada = Bibliothèque nationale du Canada, 1999. http://www.collectionscanada.ca/obj/s4/f2/dsk3/ftp04/nq54846.pdf.

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Larsson, Ing-Marie. "Post-Cardiac Arrest Care : Therapeutic Hypothermia, Patient Outcomes and Relatives’ Experiences." Doctoral thesis, Uppsala universitet, Institutionen för kirurgiska vetenskaper, 2014. http://urn.kb.se/resolve?urn=urn:nbn:se:uu:diva-229758.

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The overall aim of the thesis was to study post-resuscitation care of cardiac arrest (CA) patients with a focus on therapeutic hypothermia treatment, outcomes up to six months post-CA and relatives’ experiences during the hospital stay. In Paper I, the aim was to asses effectiveness of hypothermia treatment with cold, 4°C, intravenous crystalloid infusion combined with ice packs. In conclusion, the described cooling method was found to be useful for inducing and maintaining hypothermia, allowed good temperature control during rewarming and to be feasible in clinical practice. The aim in Paper II was to investigate biomarkers and the association of serum glial fibrillary acidic protein (GFAP) levels with outcome, and to compare GFAP with neuron-specific enolas (NSE) and S100B. The result showed increased GFAP levels in the poor outcome group, but did not show sufficient sensitivity to predict neurological outcome. Both NSE and S100B were shown to be better predictors. A combination of the investigated biomarkers did not increase the ability to predict neurological outcome. In Paper III, the aim was to investigate whether there were any changes in and correlations between anxiety, depression and health-related quality of life (HRQoL) over time, between hospital discharge and one and six months post-CA. There was improvement over time in HRQoL, but changes over time in anxiety and depression were not found. Physical problems seemed to affect HRQoL more than psychological problems. The results also indicate that the less anxiety and depression patients perceive, the better their HRQoL. In the fourth paper, the aim was to describe relatives’ experiences during the next of kin’s hospital stay after surviving a CA. The analysis resulted in three themes: The first period of chaos, Feeling secure in a difficult situation, and Living in a changed existence. In conclusion, the results of the thesis have helped to improve knowledge within the areas studied and reveal aspects that should be taken into account in the overall treatment of this group of patients. The thesis have also shown the importance of developing an overall view and establishing a chain of care from an individual’s CA until follow-up for both the patient and his/her relatives.

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Wallin, Ewa. "Post Cardiac Arrest Care : Evaluation of prognostic tools, Patient outcomes and Relatives’ experiences at 6 months after the event." Doctoral thesis, Uppsala universitet, Anestesiologi och intensivvård, 2015. http://urn.kb.se/resolve?urn=urn:nbn:se:uu:diva-248044.

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The overall aim of the present thesis was to study post-resuscitation care of cardiac arrest (CA) patients treated with target temperature management 33°C with a focus on evaluation of two prognostic tools: variations in cerebral venous saturation and acute magnetic resonance imaging (MRI) findings on the brain post-CA. An additional aim was to investigate patients’ neurological outcome and relatives’ experiences 6 months after the event. Paper I describes the cerebral oxygen saturation of blood obtained from a jugular bulb (SjvO2) catheter The results showed that patients with poor outcome tended to have higher SjvO2values,but this difference was only significant at 96 and108 hours post-CA. The main findings of Paper II were that patients with good outcome displayed a pathological pattern mainly in the frontal and parietal lobes on MRI of the brain. Patients with poor outcome had an extensive pathological pattern in several brain regions. Furthermore, very low apparent diffusion coefficient (ADC) values were associated with poor outcome regardless of brain region. Paper III investigated physical and cognitive function over time, between one month and 6 months post-CA, as well as d life satisfaction at 6 months. The results showed that impairment in physical and cognitive function is common in CA survivors but tends to decrease over time. Despite a severe illness, which has impaired the physical and cognitive functions, satisfaction with life as a whole was reported by 70% of CA survivors. In Paper IV, relatives described their experiences 6 months after a significant others CA. The analysis resulted in three themes reflecting relatives’ everyday life 6 months after the event: Difficulties managing a changed life situation, Feeling like I come second and Feeling new hope for the future. In conclusion, the results of the present thesis have increased our understanding of the two prognostic tools that were investigated; they have generated new and revealed aspects that should be taken into account during prognostication and assessing neurological outcome of this group of patients. The thesis has also shown that the healthcare needs to improve its routines for follow-ups and information provision to both patients and their relatives.

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Lundin, Karin. "Experiences from Cochlear Implantation and Auditory Brainstem Implantation in Adults and Children : Electrophysiological Measurements, Hearing Outcomes and Patient Satisfaction." Doctoral thesis, Uppsala universitet, Institutionen för kirurgiska vetenskaper, 2016. http://urn.kb.se/resolve?urn=urn:nbn:se:uu:diva-275091.

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Cochlear implants (CIs) and auditory brainstem implants (ABIs) are prostheses for hearing used in patients with profound hearing impairment. A CI requires an operational cochlear nerve to function in contrast to an ABI. ABIs were initially designed for adult patients with neurofibromatosis type 2 (NF2), suffering from bilateral vestibular schwannomas. Now ABIs are also used for patients, both adults and children, with congenital cochlear malformations, cochlear nerve hypoplasia/aplasia, and cochlear ossification. The aims of this thesis are to evaluate hearing outcome in patients implanted with a CI after long-term deafness. An extended period of deafness has earlier been considered as a contraindication for CI surgery. Further, we analyzed if electrically evoked auditory brainstem responses (eABRs) can predict CI outcome and pinpoint the optimal selection of treatment such as CI or ABI. We also disclose our experiences from ABI surgery in Uppsala, such as implant use, hearing outcome, complications, and satisfaction among the patients. Finally, we evaluated the results and benefits of ABIs in non-NF2 pediatric patients. Results show that patients with an extended deafness period and durations over 20 years can achieve speech understanding and benefit from CIs. Patients with long-term deafness and limited years of hearing before deafness did not perform as well as those with shorter deafness duration and longer hearing experience did. eABR seems to have a definite role in the diagnostic armamentarium, to better consider alternative surgical strategies such as ABI. No eABR waveform predicted a poor CI outcome. There was no correlation between speech perception and eABR waveform latencies or eABR waveform quality. A majority of the ABI patients used their ABIs and benefited from them for at least some period. ABI assisted voice control in a majority of the full-time users and they reported improved understanding of speech with the implant switched on. No severe complications from ABI surgery or ABI stimulation were noted. The patients were generally satisfied, even if their hearing remained very limited. All pediatric patients but one used the implant continuously and benefited from it.

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Marx, Laura. "Parents’ Reflections of their Child’s Initial Visit to Metabolic Clinic: A Qualitative Study." University of Cincinnati / OhioLINK, 2019. http://rave.ohiolink.edu/etdc/view?acc_num=ucin1553513682882592.

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Houweling, Taco August Wilhelm. "Description of outcomes, patient experiences and related costs of care in low back pain patients undergoing chiropractic treatment in the UK." Thesis, University of Portsmouth, 2013. https://researchportal.port.ac.uk/portal/en/theses/description-of-outcomes-patient-experiences-and-related-costs-of-care-in-low-back-pain-patients-undergoing-chiropractic-treatment-in-the-uk(fc402d9b-0521-4b42-a57b-43ee7f641238).html.

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Rationale: The prevalence of low back pain and associated costs to society are high. Despite this, the number of studies investigating observational data on the quality and costs of care in routine health care services, such as chiropractic, is relatively small in comparison to the clinical trial evidence available on the effectiveness and cost-effectiveness of manual therapies for low back pain. Objective: To document the quality and cost of care in low back pain patients undergoing routine chiropractic care in the United Kingdom. Design: Prospective single cohort multi-centre study. Participants: A sample of 120 chiropractors and 421 patients. Methods: Following the development of a data collection instrument and a pilot study, patients suffering from low back pain were recruited by chiropractic clinics in the United Kingdom. Information was recorded using a patient self-report questionnaire at baseline prior to the initial consultation, and participants were mailed a follow-up questionnaire at three months. Health outcomes, patient experiences of the process and safety of care, and related costs in the intervening three month period were documented. Results: Four hundred and twenty-one patients formed the baseline sample, and 238 (57%) of these returned the follow-up questionnaire at three months. Statistically significant change scores (p = 0.0001) were seen for the health status measures including the Roland-Morris Disability Questionnaire, Bournemouth Questionnaire, EuroQol-5D and bothersomeness scale. One hundred and sixty-eight of 238 (70%) patients reported a clinically significant improvement on the Perceived Global Effect scale, and 73 (31%) of these were considered recovered anytime during the study period using definitions of recovery (i.e. acceptable quality of life, no disability and no pain for a whole month). One hundred and twenty-nine (54%) of patients at follow-up rated chiropractic care for their low back condition as ‘very helpful’. The number of patients rating the process of care (i.e. time and explanations given by chiropractor as well involvement in decisions about care) as ‘very good’ ranged from 157 to 168 (66% to 71% respectively of the patients at follow-up). One hundred and twenty-five (52%) of patients at follow-up reported adverse events of care (i.e. worsening of their back pain, stiffness, soreness and/or general discomfort immediately or shortly after the chiropractic treatment visits); however, only 13 (5%) of these reported that they were unable to carry on with their usual activities and/or work as a result of these events. On average, the total cost of care was £481.83 (95% CI = 333.17 to 639.42) per patient. Lost productivity resulting from time away from work was the most important contributor to these costs (59.6%). The cost of chiropractic visits was the second most important contributor, which accounted for nearly one-third of total costs (32.8%). Other health care usage including general practitioner visits, medical procedures and diagnostic imaging were responsible for a small proportion of total costs ranging from 0.4% to 1.6%. Conclusions: This programme of research is the first prospective study conducted in routine chiropractic practice simultaneously documenting information about health outcomes and patient experiences and costs of care. Patients improved markedly within the first three months of care and expressed high satisfaction with the chiropractic treatment and consultation they received. Chiropractic care was relatively safe, with common yet benign adverse events that had little influence on activities of daily living. Taken overall, patients receiving chiropractic care reported improvement at arguably reasonable cost, suggesting this approach to the health care of patients with low back pain be considered in the wider context of health care delivery in the United Kingdom.

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Siddiq, Shabnaz. "Experiences of Parents of Children Diagnosed with Inherited Metabolic Diseases (IMD) in Canada: Qualitative Description and Identification of Patient- and Family-Centred Outcomes." Thesis, Université d'Ottawa / University of Ottawa, 2016. http://hdl.handle.net/10393/34273.

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Objectives: The objectives of this thesis were to: (i) understand the experiences of parents/caregivers of children with inherited metabolic diseases (IMDs), including perceptions of the health care system; and (ii) identify important patient/family-centred outcomes for measurement in future studies. Methods: A qualitative study used semi-structured interviews to gain in-depth insight into caregivers’ experiences. In an adapted meta-synthesis study, the qualitative findings were integrated with the results of related research to identify priority outcomes. Results: Twenty-one caregivers were interviewed. Participants described adjusting to the management of their child’s illness through specific coping strategies but reported stress related to social development. While generally satisfied with disease-specific care, participants described negative experiences with non IMD-specific health services. Health-related quality of life, parental coping, and specific experiences with health care emerged as high-priority outcomes. Conclusions: This project contributes to the limited published literature on caregiver experiences with pediatric IMD and informs future patient-centred research.

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Книги з теми "Patient-reported outcomes and experiences"

Benson, Tim. Patient-Reported Outcomes and Experience. Cham: Springer International Publishing, 2022. http://dx.doi.org/10.1007/978-3-030-97071-0.

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Patient-reported outcomes: Measurement, implementation and interpretation. Boca Raton: CRC Press/Taylor & Francis Group, 2014.

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Devlin, N. J. (Nancy J.), author and Parkin David W. author, eds. Using patient reported outcomes to improve health care. Chichester, West Sussex: John Wiley & Sons Inc., 2016.

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Kamudoni, Paul, Nutjaree Johns, and Sam Salek. Living with Chronic Disease: Measuring Important Patient-Reported Outcomes. Singapore: Springer Singapore, 2018. http://dx.doi.org/10.1007/978-981-10-8414-0.

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Athanasiou, Thanos, Ara Darzi, and Aung Ye Oo, eds. Patient Reported Outcomes and Quality of Life in Cardiovascular Interventions. Cham: Springer International Publishing, 2022. http://dx.doi.org/10.1007/978-3-031-09815-4.

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M, Fayers Peter, and Machin David 1939-, eds. Quality of life: The assessment, analysis, and interpretation of patient-reported outcomes. 2nd ed. Chichester: John Wiley & Sons, 2007.

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Office, General Accounting. Cataract surgery: Patient-reported data on appropriateness and outcomes : report to congressional requesters. Washington, D.C: The Office, 1993.

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Office, General Accounting. Cataract surgery: Patient-reported data on appropriateness and outcomes : report to Congressional requesters. Washington, D.C: U.S. General Accounting Office, 1993.

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Physician entrepreneurs: The quality patient experience : improve outcomes, boost quality scores, and increase revenue. Marblehead, MA: HCPro, 2008.

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Osborn, Leah. Sex offender treatment programs in correctional settings: Participant selection, treatment experience, and treatment completion. New York: LFB Scholarly Pub., 2007.

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Частини книг з теми "Patient-reported outcomes and experiences"

Benson, Tim. "Patient-Reported Measures." In Patient-Reported Outcomes and Experience, 99–110. Cham: Springer International Publishing, 2022. http://dx.doi.org/10.1007/978-3-030-97071-0_9.

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Benson, Tim. "Patient Experience." In Patient-Reported Outcomes and Experience, 111–23. Cham: Springer International Publishing, 2022. http://dx.doi.org/10.1007/978-3-030-97071-0_10.

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Benson, Tim. "Staff-Reported Measures." In Patient-Reported Outcomes and Experience, 193–200. Cham: Springer International Publishing, 2022. http://dx.doi.org/10.1007/978-3-030-97071-0_17.

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Benson, Tim. "Patient-Centred Care." In Patient-Reported Outcomes and Experience, 149–58. Cham: Springer International Publishing, 2022. http://dx.doi.org/10.1007/978-3-030-97071-0_13.

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Benson, Tim. "How People Live." In Patient-Reported Outcomes and Experience, 165–76. Cham: Springer International Publishing, 2022. http://dx.doi.org/10.1007/978-3-030-97071-0_15.

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Benson, Tim. "Value of Health and Lives." In Patient-Reported Outcomes and Experience, 85–96. Cham: Springer International Publishing, 2022. http://dx.doi.org/10.1007/978-3-030-97071-0_8.

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Benson, Tim. "Noise and Complexity." In Patient-Reported Outcomes and Experience, 43–54. Cham: Springer International Publishing, 2022. http://dx.doi.org/10.1007/978-3-030-97071-0_5.

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Benson, Tim. "Health Status." In Patient-Reported Outcomes and Experience, 125–40. Cham: Springer International Publishing, 2022. http://dx.doi.org/10.1007/978-3-030-97071-0_11.

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Benson, Tim. "Why PROMs and PREMs Matter?" In Patient-Reported Outcomes and Experience, 3–12. Cham: Springer International Publishing, 2022. http://dx.doi.org/10.1007/978-3-030-97071-0_1.

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Benson, Tim. "Proxies, Caregivers and Care Home Residents." In Patient-Reported Outcomes and Experience, 201–5. Cham: Springer International Publishing, 2022. http://dx.doi.org/10.1007/978-3-030-97071-0_18.

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Тези доповідей конференцій з теми "Patient-reported outcomes and experiences"

Luu, Q., V. Thakkar, D. Massasso, K. Gibson, and S. O’Neill. "444 Promotes [patient and physician reported outcomes – measures of the true experience in sle]." In LUPUS 2017 & ACA 2017, (12th International Congress on SLE &, 7th Asian Congress on Autoimmunity). Lupus Foundation of America, 2017. http://dx.doi.org/10.1136/lupus-2017-000215.444.

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Iott, Bradley, Tanner Caverly, Astrid Fishstrom, Darren King, George Meng, and Allen Flynn. "Clinician Perspectives on the User Experience, Configuration, and Scope of Use of a Patient Reported Outcomes (PRO) Dashboard." In PervasiveHealth'19: The 13th International Conference on Pervasive Computing Technologies for Healthcare. New York, NY, USA: ACM, 2019. http://dx.doi.org/10.1145/3329189.3329198.

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Schooley, Ben, Akanksha Singh, Sarah Floyd, Stephan Pill, and John Brooks. "Direct Weighting Interactive Design of Patient Preferences for Shared Decision Making in Orthopaedic Practice." In 13th International Conference on Applied Human Factors and Ergonomics (AHFE 2022). AHFE International, 2022. http://dx.doi.org/10.54941/ahfe1002105.

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Patients need the ability to accurately and efficiently communicate their preferences across outcome domains to their healthcare providers.1-7 No existing system provides an efficient and timely approach to collect and communicate patient preferences across outcome domains to support shared decision making (SDM) in orthopaedic practice.2-4,8-19 The overarching goal of this research is to design, build, and test an app that collects baseline patient preferences and health status across orthopaedic outcomes and reports this information to the provider for use in patient care. A core component of the app is a Direct-Weighting (DW) preference assessment approach, originated from our prior research, and applied in a touchscreen based interactive design. It is envisioned that patients will use the app after scheduling a first visit to a surgeon for a new orthopaedic condition. Direct weighting (DW) approaches calculate patient-specific preference weights across outcomes by asking patients to disperse portions of a hypothetical “whole” across outcomes in a manner that reflects a patient’s preferences.20 DW has low respondent burden but it requires respondents to make “implicit” comparisons which may be difficult to conceptualize.20 However, the DW approach has become generally accepted in the quality-of-life literature and it has been shown that patients dividing up pieces of a “pie” across quality-of-life domains yields valid representations of patient preferences across the domains.20-22 However, the DW approach has not been validated with specific clinical scenarios using a clinically focused set of outcomes or by using a mobile software app. Drawing on prior research, we iteratively design and develop the app with input from prior DW research, informaticians, and clinicians. We use a qualitative approach to pilot test the app with 20 first-time visit patients presenting with joint pain and/or function deficiency. Participants were interviewed about their outcome preferences for care, used the app to prioritize outcome preferences, answered interview questions about their experience using the app, and completed a mHealth App Usability Questionnaire (MAUQ). Interview questions focused on the utility and usability of the mobile app for communicating with their provider, and capability of the app to capture their outcome preferences. Results validated five core preference domains, with most users dividing their 100-point allocation across 1-3 domains. The tool received moderate to high usability scores. Patients with older age and lower literacy found the DW approach more difficult in terms of allocating 100 points across 5 domains. Suggestions for DW interface interaction improvement included instantiation of a token/points oriented DW preference scoring methodology rather than a 1-10 sliding scale approach for improved preference weighting cognition and SDM with a provider. As more patient reported outcome (PRO) apps hit the marketplace across a broad spectrum of health conditions, these results provide evidence for a DW approach and interactive design for patients to communicate their treatment preferences to their providers.References:1.Baumhauer JF, Bozic KJ. Value-based Healthcare: Patient-reported Outcomes in Clinical Decision Making. Clin Orthop Relat Res. 2016;474(6):1375-1378.2. Slim K, Bazin JE. From informed consent to shared decision-making in surgery. J Visc Surg. 2019;156(3):181-184.3. Damman OC, Jani A, de Jong BA, et al. The use of PROMs and shared decision-making in medical encounters with patients: An opportunity to deliver value-based health care to patients. J Eval Clin Pract. 2020;26(2):524-540.4. Sorensen NL, Hammeken LH, Thomsen JL, Ehlers LH. Implementing patient-reported outcomes in clinical decision-making within knee and hip osteoarthritis: an explorative review. BMC Musculoskelet Disord. 2019;20(1):230.5. Kamal RN, Lindsay SE, Eppler SL. Patients Should Define Value in Health Care: A Conceptual Framework. J Hand Surg Am. 2018;43(11):1030-1034.6. Charles C, Gafni A, Whelan T. Decision-making in the physician-patient encounter: revisiting the shared treatment decision-making model. Social Science & Medicine. 1999;49(5):651-661.7. Niburski K, Guadagno E, Mohtashami S, Poenaru D. Shared decision making in surgery: A scoping review of the literature. Health Expect. 2020.8. Selten EM, Geenen R, van der Laan WH, et al. Hierarchical structure and importance of patients' reasons for treatment choices in knee and hip osteoarthritis: a concept mapping study. Rheumatology (Oxford). 2017;56(2):271-278.9. Kannan S, Seo J, Riggs KR, Geller G, Boss EF, Berger ZD. Surgeons' Views on Shared Decision-Making. J Patient Cent Res Rev. 2020;7(1):8-18.10. Briffa N. The employment of Patient-Reported Outcome Measures to communicate the likely benefits of surgery. Patient Relat Outcome Meas. 2018;9:263-266.

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Said, MS Mohamed, JB Eeu, AS Mohamed Yazid, A. Chandra, FN Ahmad Yazid, N. Abd Aziz, SS Shaharir, and KT Chew. "296 Case series involving obstetrics experiences and outcomes in connective tissue disease patient in universiti kebangsaan malaysia medical centre (ukmmc): a single centre experience." In LUPUS 2017 & ACA 2017, (12th International Congress on SLE &, 7th Asian Congress on Autoimmunity). Lupus Foundation of America, 2017. http://dx.doi.org/10.1136/lupus-2017-000215.296.

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Harris, Jessica M., Minjung Seo, and Joshua S. McKeown. "Global Competency Through Collaborative Online International Learning (COIL)." In Seventh International Conference on Higher Education Advances. Valencia: Universitat Politècnica de València, 2021. http://dx.doi.org/10.4995/head21.2021.13080.

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AbstractThere is a need for college students to develop global perspectives and gain cultural awareness to become responsible global citizens. Innovative ways to create such experiences are known as Collaborative Online International Learning (COIL experiences). COIL is a voluntary partnership between professors in different countries collaborating on jointly-constructed learning experiences to enhance international and intercultural understanding. The purpose of this article is to highlight a successful COIL partnership between students from SUNY Oswego in New York and The Hague University of Applied Sciences in the Netherlands during the COVID-19 pandemic. 35 students participated in the experience that served as a platform to educate students through a health educator’s unique cultural lens. Benefits from the experiences regarding global outcomes showed that both US students (n=70.6%) and Holland students (n=61.1%) felt that they gained the appropriate skills and knowledge to use in their future careers. 70.6% of US and 61.2% of Holland students reported that the COIL experience introduced them to a new outlook and new ways of thinking about how they relate to the world. The current COVID-19 pandemic has created an opportunity to rethink education pathways and integrate global learning in our classrooms.Keywords: Global learning; COIL; Partnerships, Collaboration

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Schneider, M. "SP0085 Patient reported outcomes." In Annual European Congress of Rheumatology, 14–17 June, 2017. BMJ Publishing Group Ltd and European League Against Rheumatism, 2017. http://dx.doi.org/10.1136/annrheumdis-2017-eular.7248.

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Tubaishat, Abdallah. "Can E-Portfolio Improve Students’ Readiness to Find an IT Career?" In InSITE 2015: Informing Science + IT Education Conferences: USA. Informing Science Institute, 2015. http://dx.doi.org/10.28945/2136.

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[The final form of this paper was published in the journal Issues in Informing Science and Information Technology.] An E-Portfolio Assessment Management System (EAMS) can be an innovative tool that provides students with flexible opportunities to demonstrate the acquisition of skills and abilities in an outcome-based institution. The system has been developed and used for the past ten years to create, reflect, revise, and structure students’ work. It is a repository management system that facilitates collecting, sharing, and presenting artifacts of student learning outcomes via a digital medium. Therefore, it provides students with flexible opportunities to demonstrate the acquisition of skills and abilities to demonstrate growth of achieving learning outcomes. The rationale of the EAMS is to allow students to demonstrate competences and reflect upon experiences to improve their learning and career readiness; hence, they are accountable for their learning. The system was built around two defined set of learning outcomes: institutionally agreed upon set of learning outcomes, and learning objectives that are related to major requirements. The purpose of this study is to analyze students’ perceptions and attitudes when using an e-portfolio to support their employment opportunities. The participants were 217 students in the College of Technological Innovation. The students reported that the developing of e-portfolios was extremely helpful. The results showed that students have positive opinions about using e-portfolios as a beneficial tool to support their readiness for employment; they believe an e-portfolio increases their confidence to find a job in the IT field because it can allow them to showcase artifacts that demonstrate competencies and reflect upon experiences, and they can provide their supervisors during their industrial training with an e-resume that includes views of their actual work of what they have learned and are able to do when they complete their degree. Employers then can review e-portfolios to select prospective employees work readiness skills; hence, graduates are more likely to obtain a job in their workplaces. In conclusion, students do like the idea of e-portfolios when it is presented to them as a career showcase rather than a process for documenting learning. A career center can use e-portfolios as a tool to help students find a job. Furthermore, our analysis and evaluation uncovered learning issues involved in moving from the traditional approach of learning toward an integrated learning system that can be used after graduation.

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Puzhko, Svetlana, Gillian Bartlett-Esquilant, Marie-Eve Poitras, Charlotte Schwarz, Gail Macartney, Sabrina Wong, Shelley Doucet, and Yvonne Hanson. "Mapping primary care in canada for a patient reported experience and outcome measures survey." In NAPCRG 49th Annual Meeting — Abstracts of Completed Research 2021. American Academy of Family Physicians, 2022. http://dx.doi.org/10.1370/afm.20.s1.3225.

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Manno, Vincent P., Katherine K. Friend, and Emilie R. Nelson. "Feasibility Study of a Hybrid Combustion-Fuel Cell Cogeneration Plant: A Senior Design Project Case Study." In ASME 1999 International Mechanical Engineering Congress and Exposition. American Society of Mechanical Engineers, 1999. http://dx.doi.org/10.1115/imece1999-1136.

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Abstract This paper is a case study of a senior level project on cogeneration for the Tufts University Medford, MA campus. Eight students were involved — six in the BSME program and two in the BSEnvE program. Through brainstorming and collaborative planning, students developed a “Proposal Document” which defined the study objectives, milestone schedules and deliverables. The student team was then divided into technical and project functional groups. Electronic communication was utilized but “face-to-face” meetings were crucial for maintaining progress. The student team evaluated whole campus and part-campus possibilities taking into account thermal and electrical demand profiles and local infrastructure. The outcome design featured a hybrid conventional combustion/molten carbonate fuel cell system to supply all electrical and partial thermal demands for a complex of buildings housing classrooms, gymnasium facilities and a new field house. Engineering specifications were developed and civil engineering and siting constraints were analyzed. Technology selection was driven not only by engineering constraints but also by student interest in exploring emerging technologies (fuel cells). The team presented written and oral reports to student peers, faculty, university personnel and outside experts. The paper provides an analysis of outcomes, assessments and satisfaction level. High course satisfaction and above average workloads were reported. The paper concludes with an elucidation of lessons learned including project execution, team makeup and background, the proper focus of design project courses, and the synthesis and integration of knowledge. Even in this small, relatively homogeneous mix of students, attention to bridging interdisciplinary gaps was required. Experience from this and similar courses indicate that the goal of capstone “synthesizing” experiences is flawed if the tendency towards “disciplinarity” in undergraduate education continues.

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Ragni, Benedetta, Piergiorgio Guarini, Giusi Antonia Toto, and Pierpaolo Limone. "Digital Resilience and Psychological Wellbeing of Italian Higher Education Students: An Exploratory Study." In 9th International Scientific Conference Technics and Informatics in Education. University of Kragujevac, Faculty of Technical Sciences Čačak, 2022. http://dx.doi.org/10.46793/tie22.431r.

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Covid-19 pandemic has increased the use of technology in the educational field. While previous literature has demonstrated the benefits of using technology in educational environments, the risks related to problematic digital behaviors have been less investigated. Digital resilience represents a protective factor for students’ learning outcomes and emotional wellbeing. The main aim of this study was to explore Italian university students’ digital resilience levels and their psychological wellbeing in terms of stress and psychological resilience. 94 students (F=57.4%) aged 19-57 (M=31.11, SD=9.04) completed an ad-hoc questionnaire on digital resilience which included the Perceived Stress Scale, the KOP-26, and the Brief Resilience Scale. Descriptive statistics, item analysis, and bivariate correlations were performed. Results showed that Italian students reported higher levels of stress (M=21.53, SD=6.92) than the Italian normative sample. In addition to this, they perceived good levels of both psychological and digital resilience: they reported being aware of potential strategies for preparing for and responding to cyber threats and how to face negative online experiences. These results could usefully inform interventions aimed at helping them to recognize and manage risks and threats when online

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Звіти організацій з теми "Patient-reported outcomes and experiences"

DiBenedetti, Dana B., T. Michelle Brown, Carla Romano, Claire Ervin, Sandy Lewis, and Sheri Fehnel. Conducting Patient Interviews Within a Clinical Trial Setting. RTI Press, August 2018. http://dx.doi.org/10.3768/rtipress.2018.op.0054.1808.

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Qualitative data centered on patients’ experiences and perspectives typically go uncollected in clinical trial settings. Yet patients’ treatment experiences offer complementary insights and context on topics such as disease management, treatment gaps, and previous treatments outside of those gathered in traditional patient-reported outcome questionnaires. Qualitative interviews can capture patients’ perceptions of treatment needs, more fully explore meaningful changes experienced as a result of treatment, and reveal outcomes that are most important to patients. Asking patients detailed questions can provide insight into the “why” of a patient’s expressed thought or feeling. The inclusion of patient interviews within clinical trials is a relatively new and evolving field of research. This article delineates the types of data that may be collected during interviews with clinical trial participants and outlines two approaches to conducting qualitative research in the clinical trial setting, with a focus on maximizing the value of the resulting data.

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Treadwell, Jonathan R., James T. Reston, Benjamin Rouse, Joann Fontanarosa, Neha Patel, and Nikhil K. Mull. Automated-Entry Patient-Generated Health Data for Chronic Conditions: The Evidence on Health Outcomes. Agency for Healthcare Research and Quality (AHRQ), March 2021. http://dx.doi.org/10.23970/ahrqepctb38.

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Background. Automated-entry consumer devices that collect and transmit patient-generated health data (PGHD) are being evaluated as potential tools to aid in the management of chronic diseases. The need exists to evaluate the evidence regarding consumer PGHD technologies, particularly for devices that have not gone through Food and Drug Administration evaluation. Purpose. To summarize the research related to automated-entry consumer health technologies that provide PGHD for the prevention or management of 11 chronic diseases. Methods. The project scope was determined through discussions with Key Informants. We searched MEDLINE and EMBASE (via EMBASE.com), In-Process MEDLINE and PubMed unique content (via PubMed.gov), and the Cochrane Database of Systematic Reviews for systematic reviews or controlled trials. We also searched ClinicalTrials.gov for ongoing studies. We assessed risk of bias and extracted data on health outcomes, surrogate outcomes, usability, sustainability, cost-effectiveness outcomes (quantifying the tradeoffs between health effects and cost), process outcomes, and other characteristics related to PGHD technologies. For isolated effects on health outcomes, we classified the results in one of four categories: (1) likely no effect, (2) unclear, (3) possible positive effect, or (4) likely positive effect. When we categorized the data as “unclear” based solely on health outcomes, we then examined and classified surrogate outcomes for that particular clinical condition. Findings. We identified 114 unique studies that met inclusion criteria. The largest number of studies addressed patients with hypertension (51 studies) and obesity (43 studies). Eighty-four trials used a single PGHD device, 23 used 2 PGHD devices, and the other 7 used 3 or more PGHD devices. Pedometers, blood pressure (BP) monitors, and scales were commonly used in the same studies. Overall, we found a “possible positive effect” of PGHD interventions on health outcomes for coronary artery disease, heart failure, and asthma. For obesity, we rated the health outcomes as unclear, and the surrogate outcomes (body mass index/weight) as likely no effect. For hypertension, we rated the health outcomes as unclear, and the surrogate outcomes (systolic BP/diastolic BP) as possible positive effect. For cardiac arrhythmias or conduction abnormalities we rated the health outcomes as unclear and the surrogate outcome (time to arrhythmia detection) as likely positive effect. The findings were “unclear” regarding PGHD interventions for diabetes prevention, sleep apnea, stroke, Parkinson’s disease, and chronic obstructive pulmonary disease. Most studies did not report harms related to PGHD interventions; the relatively few harms reported were minor and transient, with event rates usually comparable to harms in the control groups. Few studies reported cost-effectiveness analyses, and only for PGHD interventions for hypertension, coronary artery disease, and chronic obstructive pulmonary disease; the findings were variable across different chronic conditions and devices. Patient adherence to PGHD interventions was highly variable across studies, but patient acceptance/satisfaction and usability was generally fair to good. However, device engineers independently evaluated consumer wearable and handheld BP monitors and considered the user experience to be poor, while their assessment of smartphone-based electrocardiogram monitors found the user experience to be good. Student volunteers involved in device usability testing of the Weight Watchers Online app found it well-designed and relatively easy to use. Implications. Multiple randomized controlled trials (RCTs) have evaluated some PGHD technologies (e.g., pedometers, scales, BP monitors), particularly for obesity and hypertension, but health outcomes were generally underreported. We found evidence suggesting a possible positive effect of PGHD interventions on health outcomes for four chronic conditions. Lack of reporting of health outcomes and insufficient statistical power to assess these outcomes were the main reasons for “unclear” ratings. The majority of studies on PGHD technologies still focus on non-health-related outcomes. Future RCTs should focus on measurement of health outcomes. Furthermore, future RCTs should be designed to isolate the effect of the PGHD intervention from other components in a multicomponent intervention.

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Chang, Min Cheol, Yoo Jin Choo, and Sohyun Kim. Effect of Prehabilitation in Colorectal Cancer Surgery: A Systematic Review and Meta-analysis. INPLASY - International Platform of Registered Systematic Review and Meta-analysis Protocols, October 2022. http://dx.doi.org/10.37766/inplasy2022.10.0015.

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Review question / Objective: Colorectal cancer increases with age, and elderly patients are associated with a poorer prognosis after colorectal surgery. Since comorbidity and frailty are associated with clinical outcomes, several strategies are introduced to improve clinical outcomes according to correct those.Despite efforts to improve the clinical outcome after surgery, patients with colorectal surgery still frequently experience complications. While Enhanced Recovery After Surgery has standardized principals, prehabilitation program varied among studies. The prehabilitation program according to the study showed differences in patient selection criteria, exercise, nutritional support, and methods of the outcome measurement. Therefore, various results have been reported regarding the effect of prehabilitation. The effectiveness of prehabilitation is still controversial. The aim of this study was to confirm the updated overall spectrum and measure the effect of prehabilitation in patients with colorectal cancer surgery.

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Bland, Cynthia, Sara Zuckerbraun, Lisa M. Lines, Anne Kenyon, Marjorie Hinsdale-Shouse, Amy Hendershott, Rebekah Sanchez, et al. Challenges Facing CAHPS Surveys and Opportunities for Modernization. RTI Press, November 2022. http://dx.doi.org/10.3768/rtipress.2022.op.0080.2211.

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Consumer Assessment of Healthcare Providers and Systems (CAHPS) surveys are a standard survey tool for obtaining patient assessments of health plans, hospitals, and health care providers. These surveys measure patient experiences of care, which is considered a component of health care quality. Providers use their survey results to improve patient experience, which is associated with better health care outcomes and reduced costs. CAHPS data also empower consumers and payers to make more informed choices about providers or facilities. Some people argue that CAHPS surveys are outdated and distract providers from clinical health care quality. In this paper, we review the benefits of CAHPS, the current challenges of these surveys, and ideas for modernization and innovation to ensure these surveys remain relevant. We encourage the Centers for Medicare & Medicaid Services (CMS) and its contractors to review and implement these innovations to the CAHPS surveys and the dissemination of their results.

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Darling-Hammond, Linda, Marjorie E. Wechsler, Stephanie Levin, Melanie Leung-Gagne, and Steve Tozer. Developing effective principals: What kind of learning matters? Learning Policy Institute, May 2022. http://dx.doi.org/10.54300/641.201.

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This report reviews the research literature since 2000 to understand the elements of high-quality programs and learning experiences that have been associated with positive outcomes ranging from principals’ sense of preparedness, efficacy, and reported practices to staff perceptions of school climate and retention to student achievement. It also examines the extent to which principals have opportunities to participate in learning experiences with those elements and the policies that drive both the development of high-quality programs and access to them.

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Squiers, Linda, Mariam Siddiqui, Ishu Kataria, Preet K. Dhillon, Aastha Aggarwal, Carla Bann, Molly Lynch, and Laura Nyblade. Perceived, Experienced, and Internalized Cancer Stigma: Perspectives of Cancer Patients and Caregivers in India. RTI Press, April 2021. http://dx.doi.org/10.3768/rtipress.2021.rr.0044.2104.

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Cancer stigma may lead to delayed diagnosis and treatment, especially in low- and middle-income countries. This exploratory, pilot study was conducted in India to explore the degree to which cancer stigma is perceived, experienced, and internalized among adults living with cancer and their primary caregivers. We conducted a survey of cancer patients and their caregivers in two Indian cities. The survey assessed perceived, experienced, and internalized stigma; demographic characteristics; patient cancer history; mental health; and social support. A purposive sample of 20 cancer survivor and caregiver dyads was drawn from an ongoing population-based cohort study. Overall, 85 percent of patients and 75 percent of caregivers reported experiencing some level (i.e., yes response to at least one of the items) of perceived, experienced, or internalized stigma. Both patients (85 percent) and caregivers (65 percent) perceived that community members hold at least one stigmatizing belief or attitude toward people with cancer. About 60 percent of patients reported experiencing stigma, and over one-third of patients and caregivers had internalized stigma. The findings indicate that fatalistic beliefs about cancer are prevalent, and basic education about cancer for the general public, patients, and caregivers is required. Cancer-related stigma in India should continue to be studied to determine and address its prevalence, root causes, and influence on achieving physical and mental health-related outcomes.

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Snyder, Claire, Michael Brundage, Katherine Smith, Elissa Bantug, Elliott Tolbert, Emily Little, Amanda Blackford, et al. Presenting Patient-Reported Outcomes Data to Improve Patient and Clinician Understanding and Use. Patient-Centered Outcomes Research Institute (PCORI), December 2018. http://dx.doi.org/10.25302/12.2018.ce.323.

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Heinemann, Allen, Arielle Goldsmith, Ana Miskovic, David Cella, Anne Deutsch, Karon Cook, Linda Foster, and Katherine Davis. Developing Quality Metrics From Patient-reported Outcomes for Medical Rehabilitation. Patient-Centered Outcomes Research Institute (PCORI), February 2019. http://dx.doi.org/10.25302/2.2019.cd.12114201.

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Seedu, Tegwende, Eden Manly, Taylor Moore, Laura Anderson, Beth Murray-Davis, Diane Ménage, Rebecca Seymour, and Rohan D'Souza. Understanding maternal morbidity from the perspectives of women & people with pregnancy experience: a concept analysis. INPLASY - International Platform of Registered Systematic Review and Meta-analysis Protocols, December 2022. http://dx.doi.org/10.37766/inplasy2022.12.0097.

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Review question / Objective: This study will investigate the question: what is maternal morbidity from the perspective of women and people with pregnancy experience? The objectives of this study are to: 1. describe the conditions and events that WPPE conceptualize as maternal morbidities, 2. identify the themes that arise across WPPE’s experiences, such as regional and cultural differences and similarities, and 3. produce a schematic representation of how WPPE conceptualize maternal morbidity. Background: Maternal morbidity is primarily concerned with adverse pregnancy-related outcomes, excluding mortality, among the pregnant and postpartum population. Although presently a global concern, maternal morbidity was not always prioritized in healthcare and research. The increased attention towards maternal morbidity in recent decades was preceded by the initial prioritization of maternal mortality as the dominant indicator of maternal health, leading to its decreasing trend over the decades.(1) Standards of maternal care are no longer solely defined by preventing mortality; they now include preventing and better treatment of maternal morbidity to improve patient outcomes. However, there are no universally accepted criteria for describing maternal morbidity. Less evidence is available on the views of Women and People with Pregnancy Experience (WPPE), and a knowledge gap exists in conceptualizing maternal morbidity from their perspective.

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Dy, Sydney M., Julie M. Waldfogel, Danetta H. Sloan, Valerie Cotter, Susan Hannum, JaAlah-Ai Heughan, Linda Chyr, et al. Integrating Palliative Care in Ambulatory Care of Noncancer Serious Chronic Illness: A Systematic Review. Agency for Healthcare Research and Quality (AHRQ), February 2020. http://dx.doi.org/10.23970/ahrqepccer237.

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Objectives. To evaluate availability, effectiveness, and implementation of interventions for integrating palliative care into ambulatory care for U.S.-based adults with serious life-threatening chronic illness or conditions other than cancer and their caregivers We evaluated interventions addressing identification of patients, patient and caregiver education, shared decision-making tools, clinician education, and models of care. Data sources. We searched key U.S. national websites (March 2020) and PubMed®, CINAHL®, and the Cochrane Central Register of Controlled Trials (through May 2020). We also engaged Key Informants. Review methods. We completed a mixed-methods review; we sought, synthesized, and integrated Web resources; quantitative, qualitative and mixed-methods studies; and input from patient/caregiver and clinician/stakeholder Key Informants. Two reviewers screened websites and search results, abstracted data, assessed risk of bias or study quality, and graded strength of evidence (SOE) for key outcomes: health-related quality of life, patient overall symptom burden, patient depressive symptom scores, patient and caregiver satisfaction, and advance directive documentation. We performed meta-analyses when appropriate. Results. We included 46 Web resources, 20 quantitative effectiveness studies, and 16 qualitative implementation studies across primary care and specialty populations. Various prediction models, tools, and triggers to identify patients are available, but none were evaluated for effectiveness or implementation. Numerous patient and caregiver education tools are available, but none were evaluated for effectiveness or implementation. All of the shared decision-making tools addressed advance care planning; these tools may increase patient satisfaction and advance directive documentation compared with usual care (SOE: low). Patients and caregivers prefer advance care planning discussions grounded in patient and caregiver experiences with individualized timing. Although numerous education and training resources for nonpalliative care clinicians are available, we were unable to draw conclusions about implementation, and none have been evaluated for effectiveness. The models evaluated for integrating palliative care were not more effective than usual care for improving health-related quality of life or patient depressive symptom scores (SOE: moderate) and may have little to no effect on increasing patient satisfaction or decreasing overall symptom burden (SOE: low), but models for integrating palliative care were effective for increasing advance directive documentation (SOE: moderate). Multimodal interventions may have little to no effect on increasing advance directive documentation (SOE: low) and other graded outcomes were not assessed. For utilization, models for integrating palliative care were not found to be more effective than usual care for decreasing hospitalizations; we were unable to draw conclusions about most other aspects of utilization or cost and resource use. We were unable to draw conclusions about caregiver satisfaction or specific characteristics of models for integrating palliative care. Patient preferences for appropriate timing of palliative care varied; costs, additional visits, and travel were seen as barriers to implementation. Conclusions. For integrating palliative care into ambulatory care for serious illness and conditions other than cancer, advance care planning shared decision-making tools and palliative care models were the most widely evaluated interventions and may be effective for improving only a few outcomes. More research is needed, particularly on identification of patients for these interventions; education for patients, caregivers, and clinicians; shared decision-making tools beyond advance care planning and advance directive completion; and specific components, characteristics, and implementation factors in models for integrating palliative care into ambulatory care.

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