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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.
Повний текст джерелаАнотація:
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.
Повний текст джерелаАнотація:
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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Dobrozsi, Sarah, and Julie Panepinto. "Patient-reported outcomes in clinical practice." Hematology 2015, no. 1 (December 5, 2015): 501–6. http://dx.doi.org/10.1182/asheducation-2015.1.501.
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Abstract Patient-reported outcome (PRO) measurement plays an increasingly important role in health care and understanding health outcomes. PROs are any report of a patient's health status that comes directly from the patient, and can measure patient symptoms, patient function, and quality-of-life. PROs have been used successfully to assess impairment in a clinical setting. Use of PROs to systematically quantify the patient experience provides valuable data to assist with clinical care; however, initiating use of PROs in clinical practice can be daunting. Here we provide suggestions for implementation of PROs and examples of opportunities to use PROs to tailor individual patient therapy to improve patient outcomes, patient–physician communication, and the quality of care for hematology/oncology patients.
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Chai-Adisaksopha, Chatree, Mark W. Skinner, Randall Curtis, Neil Frick, Michael B. Nichol, Declan Noone, Brian O’Mahony, et al. "Psychometric properties of the Patient Reported Outcomes, Burdens and Experiences (PROBE) questionnaire." BMJ Open 8, no. 8 (August 2018): e021900. http://dx.doi.org/10.1136/bmjopen-2018-021900.
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ObjectiveTo assess the psychometric properties of the Patient Reported Outcomes, Burdens and Experiences (PROBE) questionnaire.MethodsThis study was a cross-sectional, multinational study. Participants were enrolled if they were more than 10 years old and people with haemophilia A or B or people without a bleeding disorder. Participants were invited through non-governmental patient organisations in 21 countries between 01/27/2016 and 02/23/2017. The following psychometric properties: missing data, floor and ceiling effects, exploratory factor analysis and internal consistency reliability were examined. A PROBE Score was derived and assessed for its convergent and known groups validity.ResultsThe study analysed the data on 916 participants with median age of 37.0 (IQR 27.0 to 48.0) years, 74.8% male. In the domain assessing patient-reported outcomes (PROs), more than 15% of participants presented a ceiling effect for all items but two, and a floor effect for one item. Factor analysis identified three factors explaining the majority of the variance. Cronbach’s alpha coefficient indicated good internal consistency reliability (0.84). PROBE items showed moderate to strong correlations with corresponding EuroQol five dimension 5-level instrument (EQ-5D-5L) domains. The PROBE Score has a strong correlation (r=0.67) with EQ-5D-5L utility index score. The PROBE Score has a known groups validity among various groups.ConclusionsThe results of this study suggest that PROBE is a valid questionnaire for evaluating PROs in people with haemophilia as well as control population. The known-group property of PROBE will allow its use in future clinical trials, longitudinal studies, health technology assessment studies, routine clinical care or registries. Additional studies are needed to test responsiveness and sensitivity to change.Trial registration numberNCT02439710; Results.
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van Tol, Robin, Merel Kimman, Jarno Melenhorst, Laurents Stassen, Stephanie Breukink, and Carmen Dirksen. "OP141 A Patient-Reported Outcome Measure For Hemorrhoidal Disease." International Journal of Technology Assessment in Health Care 34, S1 (2018): 51–52. http://dx.doi.org/10.1017/s0266462318001551.
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Introduction:Treatment options for hemorrhoidal disease (HD) include conservative treatment (e.g. laxatives), rubber band ligation, and more invasive surgical treatment options. Outcomes reported in clinical trials evaluating treatment effectiveness are heterogeneous, making comparisons difficult. Moreover, clinical outcomes, such as recurrence, complications and symptoms, do not fully represent the relevant benefits and harms of treatment to the patient. We therefore developed (i) a core outcome set (COS) for HD treatment, and (ii) a patient-reported outcome measure (PROM) evaluating symptoms and impact on daily life.Methods:Literature review established outcomes most commonly used in studies evaluating HD treatment. A Delphi study with health professionals and patients was conducted to rank and discuss the outcomes in terms of importance and completeness, and reach consensus on a COS. In addition, individual patient interviews (n=15) were held to gain insight into patient experiences with HD and treatment. A panel of experts subsequently developed a PROM that focused on the core outcomes. Face and content validity were assessed (n=10) using a retrospective verbal probing technique.Results:Recurrent symptoms, complications and treatment satisfaction were the primary focus for health professionals, while patients were more concerned with overall impact on daily life. Patients ranked blood loss, pain and itching as the most bothersome symptoms. A PROM was developed, consisting of seven items covering three domains: severity of symptoms, impact on daily life, and treatment satisfaction (if applicable). The questions and response options were clear to patients and content validity was good. The questionnaire took approximately three minutes to complete.Conclusions:We developed a COS and a PROM for HD treatment. The PROM can be used in clinical trials as the primary outcome measure evaluating treatment effectiveness from the patient's perspective. It can also support shared decision-making regarding individual treatment pathways in clinical practice. A psychometric validation study is currently underway.
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Bradley, Elizabeth, Andrew Shelton, Trevor Hodge, David Morris, Hilary Bekker, Steven Fletcher, and Sophy Barber. "Patient-reported experience and outcomes from orthodontic treatment." Journal of Orthodontics 47, no. 2 (February 29, 2020): 107–15. http://dx.doi.org/10.1177/1465312520904377.
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Objective: To measure patient-reported impact of orthodontic treatment in terms of pre-treatment concerns, treatment experience and treatment outcome. Setting: Four sites in Yorkshire, including two secondary care settings (Leeds Dental Institute and St Luke’s Hospital, Bradford) and two specialist orthodontic practices. Design: Cross-sectional survey. Participants: NHS orthodontic patients (aged 12+ years) who have completed comprehensive orthodontic treatment, excluding orthognathic surgery and craniofacial anomalies. Methods: Participants were opportunistically identified by the direct clinical care team during scheduled appointments and those eligible were invited to participate. Data were collected using the Orthodontic Patient Treatment Impact Questionnaire (OPTIQ), a validated 12-item measure with questions relating to pre-treatment experience, impact of treatment and outcome from treatment. Results: Completed questionnaires for analysis included 120 from primary care and 83 from secondary care. The most common pre-treatment concerns were alignment (89%) and being embarrassed to smile (63%). The most common expectations from orthodontic treatment were improved confidence to eat (87%) and smile (72%) in front of others, improved appearance of teeth (85%) and reduced teasing/bullying (63%). Only 67% respondents recalled receiving written information and the lowest recall related to retainer type and length of retention. The most commonly reported complications were sore mouth (68%), fixed appliance breakage (61%) and gingivitis (39%). Treatment caused greatest impact in relation to pain, limitations in eating and effect on speech. Overall satisfaction with orthodontic treatment was reported by 96% of respondents, 87% would have orthodontic treatment again (if needed) and 91% would recommend treatment to a friend. Conclusions: The OPTIQ is a useful patient-reported tool to identify pre-treatment concerns and expectations, treatment experience and outcome. Orthodontic treatment leads to high levels of satisfaction.
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Black, Nick, Mira Varaganum, and Andrew Hutchings. "Relationship between patient reported experience (PREMs) and patient reported outcomes (PROMs) in elective surgery." BMJ Quality & Safety 23, no. 7 (February 7, 2014): 534–42. http://dx.doi.org/10.1136/bmjqs-2013-002707.
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Slade, Anita L., Margaret E. O’Hara, David Quinn, Laura Marley, Stephen Griffith, Melanie Calvert, M. Sayeed Haque, Hoong Sern Lim, Philippa Doherty, and Deirdre A. Lane. "Living with a left ventricular assist device: Capturing recipients experiences using group concept mapping software." PLOS ONE 17, no. 9 (September 21, 2022): e0273108. http://dx.doi.org/10.1371/journal.pone.0273108.
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Background Left ventricular assist device (LVAD) implantation significantly impacts on a recipient’s symptoms and quality of life. Capturing their experiences and post implant journey is an important part of clinical practice, research and device design evolution. Patient reported outcome measures (PROMs) are a useful tool for capturing that experience. However, patient reported outcome measures need to reflect recipients’ experiences. Discussions with a patient partner group found that none of the frequently used cardiology PROMs captured their unique experiences. Aims To capture the experiences and important issues for LVAD recipients. Develop a conceptual map of domains and items that should be reflected in patient reported outcomes. Methods Group concept mapping (GCM) web-based software was used to remotely capture and structure recipients’ experiences across a wide geographical area. GCM is a semi-quantitative mixed method consisting of 3 stages: item generation, item sorting and rating (importance, relevance and frequency). Patient partners were involved in all aspects of the study design and development. Results 18 LVAD recipients consented to take part. 101 statements were generated and multi-dimensional scaling, and hierarchical cluster analysis identified 9 clusters. Cluster themes included: Activities, Partner/family support, Travel, Mental wellbeing, Equipment and clothing, Physical and cognitive limitations, LVAD Restrictions, LVAD Challenges and positive impact of the LVAD (LVAD Positives). LVAD Positives were scored highest across all the rating variables, e.g., frequency (2.85), relevance (2.44) and importance (2.21). Other domains rated high for importance included physical and cognitive limitations (2.19), LVAD restrictions (2.11), Partner/family support (2.02), and Equipment and clothing (2.01). Conclusion Online GCM software facilitated the inclusion of geographically dispersed recipients and provided useful insights into the experiences of LVAD recipients. The conceptual framework identifies important domains and items that should be prioritised and included in patient reported outcomes in future research, LVAD design evolution, and clinical practice.
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Jones, EL, TW Wainwright, JD Foster, JRA Smith, RG Middleton, and NK Francis. "A systematic review of patient reported outcomes and patient experience in enhanced recovery after orthopaedic surgery." Annals of The Royal College of Surgeons of England 96, no. 2 (March 2014): 89–94. http://dx.doi.org/10.1308/003588414x13824511649571.
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Introduction Orthopaedic enhanced recovery after surgery (ERAS) providers are encouraged to estimate the actual benefit of ERAS according to the patient’s opinion by using patient generated data alongside traditional measures such as length of stay. The aim of this paper was to systemically review the literature on the use of patient generated information in orthopaedic ERAS across the whole perioperative pathway. Methods Publications were identified using Embase™, MEDLINE®, AMED, CINAHL® (Cumulative Index to Nursing and Allied Health Literature), the Cochrane Library and the British Nursing Index. Search terms related to experiences, acceptance, satisfaction or perception of ERAS and quality of life (QoL). Findings Of the 596 abstracts found, 8 papers were identified that met the inclusion criteria. A total of 2,208 patients undergoing elective hip and knee arthroplasty were included. Patient satisfaction was reported in 6 papers. Scores were high in all patients and not adversely affected by length of stay. QoL was reported in 2 papers and showed that QoL scores continued to increase up to 12 months following ERAS. Qualitative methods were used in one study, which highlighted problems with support following discharge. There is a paucity of data reporting on patient experience in orthopaedic ERAS. However, ERAS does not compromise patient satisfaction or QoL after elective hip or knee surgery. The measurement of patient experience should be standardised with further research.
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Chai-Adisaksopha, Chatree, Alfonso Iorio, Randall Curtis, Neil Frick, Michael Nichol, Declan Noone, Brian O'Mahony, David Page, Jeffrey Stonebraker, and Mark Skinner. "Test-Retest Reliability Analysis of the Patient Reported Outcomes Burdens and Experiences (PROBE)." Blood 128, no. 22 (December 2, 2016): 5964. http://dx.doi.org/10.1182/blood.v128.22.5964.5964.
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Abstract Background: Patient Reported Outcomes Burdens and Experiences (PROBE) questionnaire was developed for assessing health status in patients with bleeding disorders, specifically, hemophilia. Phase I of PROBE study confirmed robustness of methodology and feasibility of the questionnaire. Objective: To investigate the test-retest reliability of PROBE questionnaire Methods: Patients and non-hemophilia individuals who attended an hemophilia related workshops were invited to participate in this study. All participants were asked to fill out a PROBE questionnaire for 3 times. The paper-based questionnaires were collected immediately after being filled out on day 1 and day 2. Participants were instructed to log into the website within 2 weeks and fill out the web-based questionnaire. Test-retest reliability was analyzed. Results: A total of 63 participants were enrolled in this study with a median age of 50 (range 14-76) years. Of these, 30 (47.6%) were hemophilia patients or carriers, 33 (52.5%) were participants with no known bleeding disorders. On general health domain, Kappa coefficients ranged from 0.69 to 0.90, indicating substantial to almost perfect agreement for all items. Reliability of web-based questionnaire showed moderate to substantial agreement for all except 1 item. For hemophilia related domain, Kappa coefficients ranged from 0.5-1.0. Of these, 5 of 11 items were in perfect agreement (Kappa=1.0). Reliability of web-based questionnaire were in substantial to almost perfect agreement. For overall health related quality of life, EQ-5D had Kappa coefficients of 0.62 to 0.89. Intraclass correlation coefficient of visual analog scale (VAS) was 0.90 (95% confidence interval; 0.83-0.94). Test-retest reliability was comparable between hemophilia patients and participants with no known bleeding disorders. Conclusions: The results suggest that PROBE is a reliable tool to assess patients reported outcomes for hemophiliacs. Test-retest reliability analysis showed that the agreement was comparable between two participant populations. This result suggests that PROBE tool may be used to collect and compare not only patient reported outcome in hemophilia, but to generate norm values in appropriate control population. The Web-based questionnaire has an acceptable agreement with the standard paper-based version. Disclosures No relevant conflicts of interest to declare.
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Lamprell, Klay, Diana Fajardo Pulido, Yvonne Tran, Bróna Nic Giolla Easpaig, Winston Liauw, Gaston Arnolda, and Jeffrey Braithwaite. "Personal Accounts of Young-Onset Colorectal Cancer Organized as Patient-Reported Data: Protocol for a Mixed Methods Study." JMIR Research Protocols 10, no. 2 (February 26, 2021): e25056. http://dx.doi.org/10.2196/25056.
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Background Young-onset colorectal cancer is a contemporary issue in need of substantial research input. The incidence of colorectal cancer in adults younger than 50 years is rising in contrast to the decreasing incidence of this cancer in older adults. People with young-onset colorectal cancer may be at that stage of life in which they are establishing their careers, building relationships with long-term partners, raising children, and assembling a financial base for the future. A qualitative study designed to facilitate triangulation with extant quantitative patient-reported data would contribute the first comprehensive resource for understanding how this distinct patient population experiences health services and the outcomes of care throughout the patient pathway. Objective The aim of this study was to undertake a mixed-methods study of qualitative patient-reported data on young-onset colorectal cancer experiences and outcomes. Methods This is a study of web-based unsolicited patient stories recounting experiences of health services and clinical outcomes related to young-onset colorectal cancer. Personal Recollections Organized as Data (PROD) is a novel methodology for understanding patients’ health experiences in order to improve care. PROD pivots qualitative data collection and analysis around the validated domains and dimensions measured in patient-reported outcome and patient-reported experience questionnaires. PROD involves 4 processes: (1) classifying attributes of the contributing patients, their disease states, their routes to diagnosis, and the clinical features of their treatment and posttreatment; (2) coding texts into the patient-reported experience and patient-reported outcome domains and dimensions, defined a priori, according to phases of the patient pathway; (3) thematic analysis of content within and across each domain; and (4) quantitative text analysis of the narrative content. Results Relevant patient stories have been identified, and permission has been obtained for use of the texts in primary research. The approval for this study was granted by the Macquarie University Human Research Ethics Committee in June 2020. The analytical framework was established in September 2020, and data collection commenced in October 2020. We will complete the analysis in March 2021 and we aim to publish the results in mid-2021. Conclusions The findings of this study will identify areas for improvement in the PROD methodology and inform the development of a large-scale study of young-onset colorectal cancer patient narratives. We believe that this will be the first qualitative study to identify and describe the patient pathway from symptom self-identification to help-seeking through to diagnosis, treatment, and to survivorship or palliation for people with young-onset colorectal cancer. International Registered Report Identifier (IRRID) DERR1-10.2196/25056
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Tinsley, Melissa. "Patient Reported Measures: Delivering Outcomes and Experiences that matter to patients in NSW." International Journal of Integrated Care 17, no. 3 (July 11, 2017): 44. http://dx.doi.org/10.5334/ijic.3156.
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Brønserud, Majken M., Maria Iachina, Anders Green, Mogens Groenvold, Liv Dørflinger, and Erik Jakobsen. "Patient-reported outcomes (PROs) in lung cancer: Experiences from a nationwide feasibility study." Lung Cancer 128 (February 2019): 67–73. http://dx.doi.org/10.1016/j.lungcan.2018.12.014.
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Garcia, Sofia F., David Cella, Steven B. Clauser, Kathryn E. Flynn, Thomas Lad, Jin-Shei Lai, Bryce B. Reeve, Ashley Wilder Smith, Arthur A. Stone, and Kevin Weinfurt. "Standardizing Patient-Reported Outcomes Assessment in Cancer Clinical Trials: A Patient-Reported Outcomes Measurement Information System Initiative." Journal of Clinical Oncology 25, no. 32 (November 10, 2007): 5106–12. http://dx.doi.org/10.1200/jco.2007.12.2341.
Повний текст джерелаАнотація:
Patient-reported outcomes (PROs), such as symptom scales or more broad-based health-related quality-of-life measures, play an important role in oncology clinical trials. They frequently are used to help evaluate cancer treatments, as well as for supportive and palliative oncology care. To be most beneficial, these PROs must be relevant to patients and clinicians, valid, and easily understood and interpreted. The Patient-Reported Outcomes Measurement Information System (PROMIS) Network, part of the National Institutes of Health Roadmap Initiative, aims to improve appreciably how PROs are selected and assessed in clinical research, including clinical trials. PROMIS is establishing a publicly available resource of standardized, accurate, and efficient PRO measures of major self-reported health domains (eg, pain, fatigue, emotional distress, physical function, social function) that are relevant across chronic illnesses including cancer. PROMIS is also developing measures of self-reported health domains specifically targeted to cancer, such as sleep/wake function, sexual function, cognitive function, and the psychosocial impacts of the illness experience (ie, stress response and coping; shifts in self-concept, social interactions, and spirituality). We outline the qualitative and quantitative methods by which PROMIS measures are being developed and adapted for use in clinical oncology research. At the core of this activity is the formation and application of item banks using item response theory modeling. We also present our work in the fatigue domain, including a short-form measure, as a sample of PROMIS methodology and work to date. Plans for future validation and application of PROMIS measures are discussed.
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Basch, Ethan, Lisa Barbera, Carolyn L. Kerrigan, and Galina Velikova. "Implementation of Patient-Reported Outcomes in Routine Medical Care." American Society of Clinical Oncology Educational Book, no. 38 (May 2018): 122–34. http://dx.doi.org/10.1200/edbk_200383.
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There is increasing interest to integrate collection of patient-reported outcomes (PROs) in routine practice to enhance clinical care. Multiple studies show that systematic monitoring of patients using PROs improves patient-clinician communication, clinician awareness of symptoms, symptom management, patient satisfaction, quality of life, and overall survival. The general approach includes a brief electronic survey, administered via the Web or an app or an automated telephone system, with alerts to clinicians for concerning or worsening issues. Patients have generally been asked to self-report on a regular basis (remotely between visits and/or at visits), with reminders prompting patients to self-report that are sent via email, text, or automated phone message. More recently, care management pathways for patients and clinicians have been triggered by PRO system alerts. PRO systems may be free-standing, integrated into electronic health record systems or patient portals, or native functionality of an electronic health record. Despite potential benefits, there are challenges with integrating PROs into practice for monitoring patient status, as there are with any modifications to existing clinical processes. These challenges range from administrative to technical to workflow. A session at the 2018 ASCO Annual Meeting was dedicated to the implementation of PROs in clinical practice. The session focused on practical examples of PRO implementations, with honest reflections on barriers and strategies that may be generalizable to other systems looking to implement PROs. Panelists for that session are the authors of this paper, which describes their respective experiences implementing PROs in practice settings.
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Poelstra, Ralph, Ruud W. Selles, Harm P. Slijper, Mark J. W. van der Oest, Reinier Feitz, Steven E. R. Hovius, and Jarry T. Porsius. "Better patients’ treatment experiences are associated with better postoperative results in Dupuytren’s disease." Journal of Hand Surgery (European Volume) 43, no. 8 (June 17, 2018): 848–54. http://dx.doi.org/10.1177/1753193418780187.
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This prospective study investigates the extent to which a better experience with healthcare delivery is associated with better postoperative treatment outcomes after surgery for Dupuytren’s contracture. Patients undergoing limited fasciectomy or percutaneous needle fasciotomy for Dupuytren’s contractures completed the Michigan Hand Outcomes Questionnaire before and 3 months after surgery, together with a patient reported experience measure, while hand therapists assessed the straightness of the finger with a goniometer. Regression analyses were used to examine associations. We found that a better experience with healthcare delivery was associated with better patient-reported outcomes, while association with residual extension deficit was minimal. Strongest associations were seen with communication of the physician, postoperative care and information about the treatment. Experience with the treatment explained up to 12% of the variance in treatment outcome. These findings suggest that patient reported treatment outcomes in Dupuytren’s disease can be improved by improving the treatment context. Level of evidence: II
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Harel, Daphna, and Murray Baron. "Methods for shortening patient-reported outcome measures." Statistical Methods in Medical Research 28, no. 10-11 (August 20, 2018): 2992–3011. http://dx.doi.org/10.1177/0962280218795187.
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Patient-reported outcome measures are widely used to assess patient experiences, well-being, and treatment response in clinical trials and cohort-based observational studies. However, patients may be asked to respond to many different measures in order to provide researchers and clinicians with a wide array of information regarding their experiences. Collecting such long and cumbersome patient-reported outcome measures may burden patients, increase research costs, and potentially reduce the quality of the data collected. Nonetheless, little research has been conducted on replicable, and reproducible methods to shorten these instruments that result in shortened forms of minimal length. This manuscript proposes the use of mixed integer programming through Optimal Test Assembly as a method to shorten patient-reported outcome measures. This method is compared to the existing standard in the field, which is selecting items based on having high discrimination parameters from an item response theory model. The method is then illustrated in an application to a fatigue scale for patients with Systemic Sclerosis.
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Blood, Zachary, Anh Tran, Lauren Caleo, Robyn Saw, Mbathio Dieng, Mark Shackleton, H. Peter Soyer, Chris Arnold, Graham J. Mann, and Rachael L. Morton. "Implementation of patient-reported outcome measures and patient-reported experience measures in melanoma clinical quality registries: a systematic review." BMJ Open 11, no. 2 (February 2021): e040751. http://dx.doi.org/10.1136/bmjopen-2020-040751.
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ObjectivesTo identify patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) in clinical quality registries, for people with cutaneous melanoma, to inform a new Australian Melanoma Clinical Outcomes Registry; and describe opportunities and challenges of routine PROM/PREM collection, especially in primary care.DesignSystematic review.Primary and secondary outcome measuresWhich PROMs and PREMs are used in clinical quality registries for people with cutaneous melanoma, how they are collected, frequency of collection, participant recruitment methods and funding models for each registry.Results1134 studies were identified from MEDLINE, PreMEDLINE, Embase, PsychInfo, Cochrane Database of Abstracts of Reviews of Effects databases and TUFTS Cost-Effectiveness Analysis Registry, alongside grey literature, from database inception to 5th February 2020. Following screening, 14 studies were included, identifying four relevant registries: Dutch Melanoma Registry, Adelphi Real-World Disease-Specific Programme (Melanoma), Patient-Reported Outcomes Following Initial treatment and Long-term Evaluation of Survivorship Registry, and Cancer Experience Registry. These used seven PROMs: EuroQol-5 Dimensions, Functional Assessment of Cancer-General (FACT-G) and FACT-Melanoma (FACT-M), European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire-Cancer 30 (EORTC QLQ-C30), Fatigue Assessment Scale Hospital Anxiety and Depression Scale, Patient-Reported Outcome Measures Information System-29 and one PREM; EORTC QLQ-Information Module 26. PROMs/PREMs in registries were reported to improve transparency of care; facilitate clinical auditing for quality assessment; enable cost-effectiveness analyses and create large-scale research platforms. Challenges included resource burden for data entry and potential collection bias toward younger, more affluent respondents. Feedback from patients with melanoma highlighted the relevance of PROMs/PREMs in assessing patient outcomes and patient experiences.ConclusionsClinical registries indicate PROMs/PREMs for melanoma care can be incorporated and address important gaps, however cost and collection bias may limit generalisability.PROSPERO registration numberCRD42018086737.
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Tolstrup, Lærke K., Helle Pappot, Lars Bastholt, Ann-Dorthe Zwisler, and Karin B. Dieperink. "Patient-Reported Outcomes During Immunotherapy for Metastatic Melanoma: Mixed Methods Study of Patients’ and Clinicians’ Experiences." Journal of Medical Internet Research 22, no. 4 (April 9, 2020): e14896. http://dx.doi.org/10.2196/14896.
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Background The benefits of electronic patient reported outcomes (PRO) questionnaires have been demonstrated in many settings, including in hospitals and patient homes. However, it remains to be investigated how melanoma patients and their treating clinicians experience the electronic self-reporting of side effects and the derived communication. Objective The primary objective of this study was to examine patients’ and clinicians’ experiences with an eHealth intervention for weekly monitoring of side effects during treatment with immunotherapy. Methods An eHealth intervention based on questions from the PRO-Common Terminology Criteria for Adverse Events (CTCAE) library was used and tested in a randomized clinical trial with patients receiving immunotherapy for malignant melanoma and clinicians at a university hospital in Denmark. On a weekly basis, patients reported their symptoms from home during the treatment via a provided tablet. The electronic patient reports were available to clinicians in the outpatient clinic. A mixed methods approach was applied to investigate the patients’ and clinicians’ experiences with the intervention. Data from patient experiences were collected in a short survey, the Patient Feedback Form. Moreover, a subset of the patients participating in the survey was interviewed about their experience. Furthermore, one focus group interview with clinicians was carried out to elucidate their views. Results A total of 57 patients completed the Patient Feedback Form, and 14 patients were interviewed. The focus group interview included 5 clinicians. Overall, patients and clinicians were satisfied with the tool. They believed it enhanced patients’ awareness of side effects and increased their feeling of involvement. The patients reported that it was easy to fill out the questionnaire and that it made sense to do so. However, a minority of the patients expressed in the interviews that they did not believe that the health care professionals had seen their reports when they came to the clinic, and that the reporting did not lead to increased contact with the department. Conclusions Overall, satisfaction with the eHealth intervention was high among patients and their treating clinicians. The tool was easy to use and contributed to greater symptom awareness and patient involvement. Thus, in terms of patient and clinician satisfaction with the tool, it makes sense to continue using the tool beyond the project period. Trial Registration ClinicalTrials.gov NCT03073031; https://tinyurl.com/tjx3gtu
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Ricci-Cabello, Ignacio, Kate S. Marsden, Anthony J. Avery, Brian G. Bell, Umesh T. Kadam, David Reeves, Sarah P. Slight, et al. "Patients’ evaluations of patient safety in English general practices: a cross-sectional study." British Journal of General Practice 67, no. 660 (June 5, 2017): e474-e482. http://dx.doi.org/10.3399/bjgp17x691085.
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BackgroundDescription of safety problems and harm in general practices has previously relied on information from health professionals, with scarce attention paid to experiences of patients.AimTo examine patient-reported experiences and outcomes of patient safety in primary care.Design and settingCross-sectional study in 45 general practices across five regions in the north, centre, and south of England.MethodA version of the Patient Reported Experiences and Outcomes of Safety in Primary Care (PREOS-PC) questionnaire was sent to a random sample of 6736 patients. Main outcome measures included ‘practice activation’ (what a practice does to create a safe environment); ‘patient activation’ (how proactive are patients in ensuring safe healthcare delivery); ‘experiences of safety events’ (safety errors); ‘outcomes of safety’ (harm); and ‘overall perception of safety’ (how safe patients rate their practice).ResultsQuestionnaires were returned by 1244 patients (18.4%). Scores were high for ‘practice activation’ (mean [standard error] = 80.4 out of 100 [2.0]) and low for ‘patient activation’ (26.3 out of 100 [2.6]). Of the patients, 45% reported experiencing at least one safety problem in the previous 12 months, mostly related to appointments (33%), diagnosis (17%), patient provider communication (15%), and coordination between providers (14%). Twenty-three per cent of the responders reported some degree of harm in the previous 12 months. The overall assessment of level of safety of practices was generally high (86.0 out of 100 [16.8]).ConclusionPriority areas for patient safety improvement in general practices in England include appointments, diagnosis, communication, coordination, and patient activation.
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King, Alexandria, Haley Leider, Dylan Herman, Ann Kinga Malinowski, and Rohan D'Souza. "Patient- and Health-Care-Provider-Reported Outcomes to Consider in Research on Pregnancy-Associated Venous Thromboembolism." Thrombosis and Haemostasis 121, no. 09 (February 10, 2021): 1228–36. http://dx.doi.org/10.1055/s-0041-1722855.
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Abstract Background Venous thromboembolism (VTE) in pregnancy can have numerous adverse impacts on patients and health care systems. Ongoing research aimed at improving maternal and fetal/neonatal outcomes is hampered by the lack of patient perspective in determining which outcomes are considered important to assess the effectiveness of interventions. Objectives The objective of this study was to elicit outcomes from those who experienced or were at risk for pregnancy-associated VTE (health service users, HSUs) and health care providers (HCPs) involved in their care. Methods Canadian HSUs and HCPs were recruited using convenience and purposive sampling, respectively. Individual, semistructured interviews aimed specifically at eliciting pregnancy-related outcomes were conducted until data saturation was attained. Interviews were audio-recorded and transcribed verbatim. Written transcripts were de-identified and interpretatively analyzed in duplicate to obtain outcomes related to participant experiences. Outcomes were grouped based on a taxonomy developed for medical research and compared between and across interviews with patients and HCPs, and with those obtained through a systematic review of the published literature. Results and Conclusion We interviewed 10 HSUs and eight HCPs and elicited 52 outcomes, 21 of which have not been reported in the literature. Although the majority of elicited outcomes were in the clinical/physiological core outcome area, both HSUs and HCPs highlighted the importance of outcomes related to functioning/life impact and general wellbeing of mother and baby. These outcomes representing the perspectives of HSUs and HCPs should be considered while conducting trials on pregnancy-associated VTE.
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Kremers, Marjolein N. T., Tessel Zaalberg, Eva S. van den Ende, Marlou van Beneden, Frits Holleman, Prabath W. B. Nanayakkara, and Harm R. Haak. "Patient’s perspective on improving the quality of acute medical care: determining patient reported outcomes." BMJ Open Quality 8, no. 3 (September 2019): e000736. http://dx.doi.org/10.1136/bmjoq-2019-000736.
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RationaleThere is an increasing societal demand for quality assurance and transparency of medical care. The American National Academy of Medicine has determined patient centredness as a quality domain for improvement of healthcare. While many of the current quality indicators are disease specific, most emergency department (ED) patients present with undifferentiated complaints. Therefore, there is a need for generic outcome measures. Our objective was to determine relevant patient reported outcomes (PROs) for quality measurement of acute care.MethodsWe conducted semistructured interviews in patients ≥18 years presenting at the ED for internal medicine. Patients with a cognitive impairment or language barrier were excluded. Interviews were analysed using qualitative content analysis.ResultsThirty patients were interviewed. Patients reported outcomes as relevant in five domains: relief of symptoms, understanding the diagnosis, presence and understanding of the diagnostic and/or therapeutic plan, reassurance and patient experiences. Experiences were often mentioned as relevant to the perceived quality of care and appeared to influence the domain reassurance.ConclusionWe determined five domains of relevant PROs in acute care. These domains will be used for developing generic patient reported measures for acute care. The patients’ perspective will be incorporated in these measures with the ultimate aim of organising truly patient-centred care at the ED.
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Atwell, Thomas D., Georgianna G. Schultz, Bradley C. Leibovich, Grant D. Schmit, Stephen A. Boorjian, A. Nicholas Kurup, R. Houston Thompson, and Kathleen J. Yost. "Patient-Reported Outcomes After Percutaneous Renal Ablation: Initial Experience." American Journal of Roentgenology 212, no. 3 (March 2019): 672–76. http://dx.doi.org/10.2214/ajr.17.19463.
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Jagsi, Reshma, Anne Chiang, Blase N. Polite, Bruno C. Medeiros, Kristen McNiff, Amy P. Abernethy, Robin Zon, and Patrick J. Loehrer. "Qualitative Analysis of Practicing Oncologists' Attitudes and Experiences Regarding Collection of Patient-Reported Outcomes." Journal of Oncology Practice 9, no. 6 (November 2013): e290-e297. http://dx.doi.org/10.1200/jop.2012.000823.
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Battle, Dena, Wendy Kimryn Rathmell, Eric Jonasch, Pavlos Msaouel, Adam P. Stern, Tian Zhang, Daniel J. George, and Michael D. Staehler. "Patient-reported outcomes on treatment-related side effects in renal cell carcinoma." Journal of Clinical Oncology 38, no. 6_suppl (February 20, 2020): 654. http://dx.doi.org/10.1200/jco.2020.38.6_suppl.654.
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654 Background: Effective management of treatment related toxicities is crucial to maximizing patient outcomes and enhancing quality of life in renal cell carcinoma. Little is known about patient perception and reporting of side effects in a real world setting outside clinical trials. We sought to gather independent data from online patient communities to estimate gaps in communication and reporting. Methods: KCCure conducted an anonymous online survey from 07/19 to 09/19 using questions related to side-effect experience and management. Results: 1,136 patients (median age 57 years [range 28-86], 54% male) participated, 411 patients on systemic therapy were asked about side-effects. 47% of patients reported bothersome side effects impacting their daily lives. The most poorly managed side-effect was fatigue (25%), followed by taste alteration (15%) and loss of appetite (15%). Only 50% of patients are confident their medical oncologist will offer help for side effects, and 20% are worried that reporting side effects may result in dose reduction or treatment discontinuation. 6% of patients don’t talk about their side effects. Patients who identified as non-white (Hispanic, African American, Asian/Pacific Islander and Native American) were three times less likely to talk about side effects. 51% indicated the best advice on managing treatment related side effects was provided by their medical oncologist; 40% seek advice from online patient communities and 35% from advocacy organizations. Only 8% used manufacturer support websites. 13% had never had any concomitant medication prescribed to manage side effects. Major unreported side effects are sexual dysfunction, cognitive impairment and vision disturbances. Conclusions: The majority of patients experience treatment related side-effects on a regular basis, but underreporting may be significant due to a variety of factors, including fear of dose-reduction or discontinuation. Sexual side-effects are underreported. Future studies need to explore differences in reporting for minority populations as well as side effect experiences according to the class of agent prescribed, and the setting in which treatment occurs.
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Rose, Shiho, Christine Paul, Allison Boyes, Brian Kelly, and Della Roach. "Stigma-related experiences in non-communicable respiratory diseases: A systematic review." Chronic Respiratory Disease 14, no. 3 (January 23, 2017): 199–216. http://dx.doi.org/10.1177/1479972316680847.
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The stigma of non-communicable respiratory diseases (NCRDs), whether perceived or otherwise, can be an important element of a patient’s experience of his/her illness and a contributing factor to poor psychosocial, treatment and clinical outcomes. This systematic review examines the evidence regarding the associations between stigma-related experiences and patient outcomes, comparing findings across a range of common NCRDs. Electronic databases and manual searches were conducted to identify original quantitative research published to December 2015. Articles focussing on adult patient samples diagnosed with asthma, chronic obstructive pulmonary disease (COPD), cystic fibrosis, lung cancer or mesothelioma, and included a measurement of stigma-related experience (i.e. perceived stigma, shame, blame or guilt), were eligible for inclusion. Included articles were described for study characteristics, outcome scores, correlates between stigma-related experiences and patient outcomes and methodological rigor. Twenty-five articles were eligible for this review, with most ( n = 20) related to lung cancer. No articles for cystic fibrosis were identified. Twenty unique scales were used, with low to moderate stigma-related experiences reported overall. The stigma-related experiences significantly correlated with all six patient-related domains explored (psychosocial, quality of life, behavioral, physical, treatment and work), which were investigated more widely in COPD and lung cancer samples. No studies adequately met all criteria for methodological rigor. The inter-connectedness of stigma-related experiences to other aspects of patient experiences highlight that an integrated approach is needed to address this important issue. Future studies should adopt more rigorous methodology, including streamlining measures, to provide robust evidence.
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Depla, Anne Louise, Marije Lamain-de Ruiter, Lyzette T. Laureij, Hiske E. Ernst-Smelt, Jan A. Hazelzet, Arie Franx, and Mireille N. Bekker. "Patient-Reported Outcome and Experience Measures in Perinatal Care to Guide Clinical Practice: Prospective Observational Study." Journal of Medical Internet Research 24, no. 7 (July 5, 2022): e37725. http://dx.doi.org/10.2196/37725.
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Background The International Consortium for Health Outcomes Measurement has published a set of patient-centered outcome measures for pregnancy and childbirth (PCB set), including patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs). To establish value-based pregnancy and childbirth care, the PCB set was implemented in the Netherlands, using the outcomes on the patient level for shared decision-making and on an aggregated level for quality improvement. Objective This study aims to report first outcomes, experiences, and practice insights of implementing the PCB set in clinical practice. Methods In total, 7 obstetric care networks across the Netherlands, each consisting of 1 or 2 hospitals and multiple community midwifery practices (ranging in number from 2 to 18), implemented the PROM and PREM domains of the PCB set as part of clinical routine. This observational study included all women participating in the clinical project. PROMs and PREMs were assessed with questionnaires at 5 time points: 2 during pregnancy and 3 post partum. Clinical threshold values (alerts) supported care professionals interpreting the answers, indicating possibly alarming outcomes per domain. Data collection took place from February 2020 to September 2021. Data analysis included missing (pattern) analysis, sum scores, alert rates, and sensitivity analysis. Results In total, 1923 questionnaires were collected across the 5 time points: 816 (42.43%) at T1 (first trimester), 793 (41.23%) at T2 (early third trimester), 125 (6.5%) at T3 (maternity week), 170 (8.84%) at T4 (6 weeks post partum), and 19 (1%) at T5 (6 months post partum). Of these, 84% (1615/1923) were filled out completely. Missing items per domain ranged from 0% to 13%, with the highest missing rates for depression, pain with intercourse, and experience with pain relief at birth. No notable missing patterns were found. For the PROM domains, relatively high alert rates were found both in pregnancy and post partum for incontinence (469/1798, 26.08%), pain with intercourse (229/1005, 22.79%), breastfeeding self-efficacy (175/765, 22.88%), and mother-child bonding (122/288, 42.36%). Regarding the PREM domains, the highest alert rates were found for birth experience (37/170, 21.76%), shared decision-making (101/982, 10.29%), and discussing pain relief ante partum (310/793, 39.09%). Some domains showed very little clinical variation; for example, role of the mother and satisfaction with care. Conclusions The PCB set is a useful tool to assess patient-reported outcomes and experiences that need to be addressed over the whole course of pregnancy and childbirth. Our results provide opportunities to improve and personalize perinatal care. Furthermore, we could propose several recommendations regarding methods and timeline of measurements based on our findings. This study supports the implementation of the PCB set in clinical practice, thereby advancing the transformation toward patient-centered, value-based health care for pregnancy and childbirth.
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Miller, Yvette D., Jessica Tone, Sutapa Talukdar, and Elizabeth Martin. "A direct comparison of patient-reported outcomes and experiences in alternative models of maternity care in Queensland, Australia." PLOS ONE 17, no. 7 (July 12, 2022): e0271105. http://dx.doi.org/10.1371/journal.pone.0271105.
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We aimed to directly compare women’s pregnancy to postpartum outcomes and experiences across the major maternity models of care offered in Queensland, Australia. We conducted secondary analyses of self-reported data collected in 2012 from a state-wide sample of women who had recently given birth in Queensland (response rate = 30.4%). Logistic regression was used to estimate the odds of outcomes and experiences associated with three models (GP Shared Care, Public Midwifery Continuity Care, Private Obstetric Care) compared with Standard Public Care, adjusting for relevant maternal characteristics and clinical covariates. Of 2,802 women, 18.2% received Standard Public Care, 21.7% received GP Shared Care, 12.9% received Public Midwifery Continuity Care, and 47.1% received Private Obstetric Care. There were minimal differences for women in GP Shared Care. Women in Public Midwifery Continuity Care were less likely to have a scheduled caesarean and more likely to have an unassisted vaginal birth, experience freedom of mobility during labour and informed consent processes for inducing labour, vaginal examinations, fetal monitoring and receiving Syntocinon to birth their placenta, and report highest quality interpersonal care. They had fewer vaginal examinations, lower odds of perineal trauma requiring sutures and anxiety after birth, shorter postpartum hospital stays, and higher odds of a home postpartum care visit. Women in Private Obstetric Care were more likely to have their labour induced, a scheduled caesarean birth, experience informed consent processes for caesarean, and report highest quality interpersonal care, but less likely to experience unassisted vaginal birth and informed consent for Syntocinon to birth their placenta. There is an urgent need to communicate variations between maternity models across the range of outcome and experiential measures that are important to women; build more rigorous comparative evidence for Private Midwifery Care; and prioritise experiential and out-of-pocket cost comparisons in further research to enable woman-centred informed decision-making.
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Rodenbough, Anna, Cydney Opolka, Megan Ververis, and Jocelyn Grunwell. "488: ADVERSE CHILDHOOD EXPERIENCES ARE ASSOCIATED WITH PATIENT-REPORTED OUTCOMES IN CRITICALLY ILL KIDS." Critical Care Medicine 50, no. 1 (December 16, 2021): 235. http://dx.doi.org/10.1097/01.ccm.0000808276.11611.a1.
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Parsons, Graham, Cindy Ragbir, Oscar D’Agnone, Ayana Gibbs, Richard Littlewood, and Bernadette Hard. "Patient-Reported Outcomes, Experiences and Satisfaction with Weekly and Monthly Injectable Prolonged-Release Buprenorphine." Substance Abuse and Rehabilitation Volume 11 (November 2020): 41–47. http://dx.doi.org/10.2147/sar.s266838.
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Niazi, Shehzad K., Alexandra J. Greenberg-Worisek, Jennifer Smith, Allison Matthews, Patricia (Patty) Boyum, Lisa Nordan, Emily Brennan, Aaron Spaulding, and Andrea Cheville. "Exploring the Patient Experience with Patient-Reported Outcomes: A Qualitative, Multistakeholder Study." Southern Medical Journal 115, no. 9 (September 2022): 653–57. http://dx.doi.org/10.14423/smj.0000000000001438.
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González, Maynor G., Kristin N. Kelly, Ann M. Dozier, Fergal Fleming, John R. T. Monson, Adan Z. Becerra, Christopher T. Aquina, et al. "Patient Perspectives on Transitions of Surgical Care: Examining the Complexities and Interdependencies of Care." Qualitative Health Research 27, no. 12 (May 10, 2017): 1856–69. http://dx.doi.org/10.1177/1049732317704406.
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This study examined a thematic network aimed at identifying experiences that influence patients’ outcomes (e.g., patients’ satisfaction, anxiety, and discharge readiness) in an effort to improve care transitions and reduce patient burden. We drew upon the Sociology and Complexity Science Toolkit to analyze themes derived from 61 semistructured, longitudinal interviews with 20 patients undergoing either a benign or malignant colorectal resection (three interviews per patient over a 30-day after hospital discharge). Thematic interdependencies illustrate how most outcomes of care are significantly influenced by two cascades identified as patients’ medical histories and home circumstances. Patients who reported previous medical or surgical histories also experienced less distress during the discharge process, whereas patients with no prior experiences reported more concerns and greater anxiety. Patient dissatisfactions and challenges were due in large part to the contrasts between hospital and home experiences. Our hybrid approach may inform patient-centered guidelines aimed at improving transitions of care among patients undergoing major surgery.
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Kargo, Anette Stolberg, Pernille Tine Jensen, Kristina Lindemann, Niels Henrik Hjøllund, Gabor Istvan Liposits, Nicoline Raaschou-Jensen, Bettina Mølri Knudsen, Sören Möller, Dorte Gilså Hansen, and Karina Dahl Steffensen. "Association of patient-reported outcomes and ovarian cancer recurrence." International Journal of Gynecologic Cancer 31, no. 9 (June 18, 2021): 1248–59. http://dx.doi.org/10.1136/ijgc-2021-002550.
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BackgroundThe vast majority of patients with advanced ovarian cancer experience disease recurrence after primary treatment.ObjectiveTo explore the diagnostic accuracy of repeated measurement of patient-reported outcomes and quality-of-life scores in relation to ovarian cancer recurrence.MethodsPatients with ovarian cancer were recruited to the PROMova study by the end of their primary treatment at eight centers in Denmark. The purpose of the PROMova study was to explore the applicability of repeated use of patient-reported outcomes, which consisted of the European Organization for Research and Treatment of Cancer generic questionnaire and the ovarian specific questionnaire. The patient-reported outcomes were completed 3, 6, 9, 12, and 15 months after enrollment or until recurrence. The 3-month interval between completions was the period in which recurrence was assessed. Imaging and the biomarker CA125 were used as reference modality for recurrence. Mixed effects logistic regression was used to investigate the association between mean patient-reported outcome scores and recurrence. Receiver operating curves were used to establish cut-off scores. The diagnostic accuracy of patient-reported outcomes, including sensitivity, specificity, and positive and negative predictive values was estimated based on the Youden index. For combined scales, diagnostic accuracy was investigated based on multivariate analysis.ResultsThe analysis included 196 patients with an overall recurrence rate of 50.5% and an overall mean time to recurrence of 302 days. With imaging as reference, patients with recurrence reported significantly lower global health, worse physical functioning, and more abdominal symptoms preceding recurrence. With CA125 as reference, global health, physical and emotional functioning were impaired. Despite the worsening of a number of symptoms prior to recurrence whichever reference modality was applied, the patient-reported outcome scores did not provide adequate diagnostic accuracy.ConclusionRepeated use of patient-reported outcomes during surveillance of ovarian cancer was not of diagnostic value. Future efforts should be directed at improving the administration of patient-reported outcomes as well as exploring the potential of using these outcomes as an indicator of clinical relevance.
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Pavlov, Kathren, Fernando Montalvo, Jordan A. Sasser, Luciana Jones, Daniel S. McConnell, and Janan A. Smither. "Applying User Experience Principles to Patient Experiences." Proceedings of the Human Factors and Ergonomics Society Annual Meeting 66, no. 1 (September 2022): 761–65. http://dx.doi.org/10.1177/1071181322661478.
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Patient experiences within the healthcare system are often negative due to the predominantly system-centric nature of healthcare, as well as the physical or mental symptoms of the medical condition being experienced. Improved patient experiences are likely to improve patient visits, engagement with treatment, reduce frustration, and in some medical conditions, improve treatment outcomes. One way to improve patient experiences is to apply user experience principles to the design of patient interactions within the healthcare system. The present study utilized Arhippainen’s User Experience heuristics to identify ways in which patient experiences can be improved. Fundamental restructuring towards patient-centric experiences and general security practices would lead to improved PX and perceptions of healthcare.
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Bardsley, M. J., and J. M. Coles. "Practical experiences in auditing patient outcomes." Quality and Safety in Health Care 1, no. 2 (June 1, 1992): 124–30. http://dx.doi.org/10.1136/qshc.1.2.124.
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Mease, P. J., V. Strand, D. Furst, E. Siegel, M. Mcilraith, M. E. Husni, and M. C. Hay. "AB0966 Are Current Patient Reported Outcomes Tools Optimized to Capture the Entire Patient Experience?" Annals of the Rheumatic Diseases 81, Suppl 1 (May 23, 2022): 1610. http://dx.doi.org/10.1136/annrheumdis-2022-eular.5325.
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BackgroundPsoriatic Arthritis (PsA) affects multiple attributes of patient health; to assess treatment effectiveness a compilation of Patient Reported Outcomes (PRO) have been utilized. While useful, most of these were originally created for other diseases and only later validated or adapted for use in PsA. More recent efforts have focused on development of PsA specific PRO tools, with inclusion of patient input and relevance for use in both clinical research and clinical care (1).ObjectivesTo subject a broad set of currently used PROs to patient assessment, giving insight into usefulness in the clinic and informing efforts for optimization of PsA PROs.MethodsFour focus groups were conducted across three regionally-diverse areas in the United States from March 2016 to October 2016. Patients represented a range of disease history, symptoms, and severity. After trained facilitators encouraged open conversation about PsA, including symptoms, challenges and feelings about disease and treatment, patients reviewed 13 currently utilized PROs and rated relevance of these instruments to reporting their disease experiences on a 3 point scale of Relevant, Somewhat Relevant, and Irrelevant. Verbal discussion followed on the merits and challenges of each rated PROResultsPRO instruments ranged from overall global assessments to disease specific assessments (Table 1). The PROs received a variety of ratings, with Functional Assessment of Chronic Illness Therapy - Fatigue (FACIT-F) and Psoriatic Arthritis Impact of Disease (PsAID) judged as Very Relevant by the largest number of patients, followed by Health Assessment Questionnaire-Spondyloarthropathies (HAQ-S) and Pain VAS (Figure 1). Instruments receiving the most assessments of Not Really Relevant were Pt Global and PsA Quality of Life (PsAQOL). In the qualitative portion of the research, major patient critiques across PROs were the time frames listed on the questionnaires; some were too restrictive and disallowed reporting important recent disease activity. Preferences were for questions asked as ‘..since your last visit..’. Multiple participants also agreed that a visual tool allowing patients to circle specific joints to indicate pain would be useful.Table 1.Outcomes Instruments Assessed in the StudyToolAbbreviationTime Period QueriedPatient GlobalPt GANone SpecifiedPain Visual Analog ScalePain VASIn the past weekHealth Assessment Questionnaire-SpondyloarthropathiesHAQ-SOver the past weekShort Form - 36SF-36Different periods queried for different questions: Compared to a year ago; None Specified; Over the past 4 weeksFunctional Assessment of Chronic Illness Therapy - FatigueFACIT-FPast 7 DaysEQ-5D and EQ Visual Analog ScaleEQ-5D-5LTodayPsoriatic Arthritis Quality of LifePsAQOLNone specifiedPsoriatic Arthritis Impact of DiseasePsAIDDuring the last weekDermatology Life Quality IndexDLQIOver the last WeekPsoriasis Symptom InventoryPSILast 7 daysWork Productivity and Activity Impairment: General HealthWPAI:GHDuring the past 7 daysWork Productivity Survey - PsAWPS-PsALast monthBeck Depression InventoryBDI-IIDuring the past 2 weeksConclusionCurrently utilized PROs in PsA evaluating domains of fatigue, function, pain, and disease specific manifestations were all important regarding new therapeutic agents. However, some are more relevant than others to patients, most notably FACIT-F and PsAID, the latter being an important example of a patient-led and disease-specific development effort. Allowing reporting of items of concern without restrictive time periods is important to patients. These preferences and comments can be utilized to better understand the value of PROs in clinical settings to optimize patient-clinician communications.References[1]Gossec L, de Wit M, Kiltz U, et al. A patient-derived and patient-reported outcome measure for assessing psoriatic arthritis: elaboration and preliminary validation of the Psoriatic Arthritis Impact of Disease (PsAID) questionnaire, a 13-country EULAR initiative. Ann Rheum Dis 2014;73: 1012–9.Disclosure of InterestsPhilip J Mease Speakers bureau: AbbVie, Eli Lilly, Genentech, Janssen, Pfizer, Amgen, Novartis, UCB, Consultant of: AbbVie, Eli Lilly, Boehringer Ingelheim, Pfizer, Amgen, GAlapagos, Genentech, Janssen, Sun Pharma, BMS, Celgene, Novartis, UCB, GSK, Grant/research support from: AbbVie, Eli Lilly, Genentech, Janssen, Pfizer, Amgen, Galapagos, Novartis, Sun Pharma, BMS, Vibeke Strand Consultant of: Abbvie, Amgen Corporation, Arena, Aria, AstraZeneca, Bayer, Bioventus, BMS, Boehringer Ingelheim, Celltrion, Chemocentryx, Elsa, EMD Serono, Endo, Equilium, Flexion, Galapagos, Genentech / Roche, Gilead, GSK, Horizon, Ichnos, Inmedix, Janssen, Kiniksa, Kypha, Lilly, Merck, MiMedx, Novartis, Pfizer, Regeneron, Rheos, R-Pharma, Samsung, Sandoz, Sanofi, Scipher, Servier, Setpoint, Sorrento, Spherix, Sun Pharma, Swing, UCB, Daniel Furst Speakers bureau: Corbus, GSK, Sanofi, Consultant of: Actelion, Amgen, BMS, Corbus, Galapagos, Sanofi, Novartis, Pfizer, Grant/research support from: Actelion, Amgen, BMS, Galapagos, Sanofi, Roche/Genentech, Novartis, Pfizer, Evan Siegel Speakers bureau: AbbVie, Janssen, Eli Lilly, Novartis, UCB, Consultant of: BMS, AbbVie, Janssen, Eli Lilly, Novartis, UCB, Melissa Mcilraith Employee of: Past Employee of Abbott and Celgene, M Elaine Husni Consultant of: AbbVie, Amgen, Janssen, Novartis, Eli Lilly, UCB, Regeneron, M. Cameron Hay Grant/research support from: Novartis
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Graupner, Caitlin, Merel L. Kimman, Suzanne Mul, Annerika H. M. Slok, Danny Claessens, Jos Kleijnen, Carmen D. Dirksen, and Stéphanie O. Breukink. "Patient outcomes, patient experiences and process indicators associated with the routine use of patient-reported outcome measures (PROMs) in cancer care: a systematic review." Supportive Care in Cancer 29, no. 2 (September 2, 2020): 573–93. http://dx.doi.org/10.1007/s00520-020-05695-4.
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Abstract Purpose In current cancer care, there is a growing debate about the value of using patient-reported outcome measures (PROMs) in daily clinical follow-up. A systematic review of the literature was conducted to assess the evidence of the effectiveness of the routine use of PROMs in daily cancer care in terms of patient outcomes, patient experiences and process indicators and to identify the effect of giving feedback about PROM findings to patients and/or health care professionals (HCPs). Methods A systematic search was performed. Studies were eligible for inclusion when they (1) used a PROM as an intervention, with or without feedback to patients and/or HCPs, compared with not using a PROM, and (2) used a PROM as an intervention with feedback to patients and/or HCPs, compared with using a PROM without giving feedback to patients and/or HCPs. Results After screening of 8341 references, 22 original studies met the inclusion criteria. Most studies found a positive effect on survival, symptoms, HRQoL and patient satisfaction. In general, using feedback to patient and/or HCPs about the PROM results led to better symptom control, HRQoL, patient satisfaction and patient-doctor communication. The majority of included studies had insufficient power to detect significant differences in the outcomes assessed. Conclusion This review shows that predominantly positive findings were found in the use of a PROM in daily cancer care. Additionally, more positive effects were seen when feedback is provided to patient and/or health care professionals, and it is thus highly recommended that this is always done.
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Gilmore, Katherine Ramsey, Patricia Hansberry Chapman, Johnny Rollins, Soo Lee-Kim, Justine Robinson, Ellen Mullen, Haleigh Mistry, et al. "Integration of patient-reported outcomes into survivorship care." Journal of Clinical Oncology 40, no. 28_suppl (October 1, 2022): 271. http://dx.doi.org/10.1200/jco.2022.40.28_suppl.271.
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271 Background: Patient reported outcomes (PRO) can be valuable clinical tools to embed the voice of patients into the clinical experience. The use of PROs in the context of cancer survivorship is relatively under-explored. Methods: Disease-specific modules of the MD Anderson Symptom Inventory (MDASI) PRO were integrated into the electronic health record (EHR), and distributed 3-7 days prior to survivorship clinic visits through the patients’ EHR portal. Patients with virtual visits were called 24 hours prior, instructed how to video link, and how to complete the MDASI PRO. For patients who completed the PRO electronically, results were reviewed during clinic visit. High symptom alerts (> = 7) for four key symptoms were established and triggered an automatic message to care teams for review. Results: From Sept 1, 2020 – August 31, 2021, 2,196 PRO surveys were sent to patients with 1,268 submitting results (57.74%) (see Table). Within specific clinics, the submission rates varied greatly between in-person and virtual appointments (33% vs. 83%). Submission rates varied by clinics, with responses ranging from 28.57% - 73.59%. Clinics with higher overall rates had a higher proportion of virtual visits. Conclusions: Electronic distribution of PROs can be successfully integrated into long term survivorship clinic visits. Virtual visits had overall much higher PRO response rates, due to pre-visit workflows which encouraged the completion of PROs. We conclude that patient education and real time support is needed to facilitate patients’ completion of PRO surveys through the electronic portal.[Table: see text]
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Holt, Kelsey, Svetlana V. Doubova, Dennis Lee, Ricardo Perez-Cuevas, and Hannah H. Leslie. "Factors associated with positive user experience with primary healthcare providers in Mexico: a multilevel modelling approach using national cross-sectional data." BMJ Open 10, no. 1 (January 2020): e029818. http://dx.doi.org/10.1136/bmjopen-2019-029818.
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ObjectiveThis study aimed to investigate factors associated with patient experience with primary care in a large public health system in Mexico and determine the amount of variability in experience attributable to facility-level and state-level factors.MethodsWe analysed cross-sectional 2016 national satisfaction survey data from the Mexican Social Security Institute (IMSS). Patient-level data were merged with facility-level data and information on poverty by state. We assessed general contextual effects and examined the relationship of patient, facility and state factors with four patient experience measures using random effects logistic regression.Results25 745 patients’ responses from 319 facilities were analysed. The majority experienced good communication (78%), the opportunity to share health concerns (91%) and resolution of doubts (85%). 29% of visits were rated as excellent. Differences between facilities and states accounted for up to 12% and 6% of the variation in patient experience, respectively. Inclusion of facility-level contextual effects improved model predictions by 8%–12%; models with facility random effects and individual covariates correctly predicted 64%–71% of individual outcomes. In adjusted models, larger patient population was correlated with worse reported communication, less opportunity to share concerns and less resolution of doubts. Men reported more positive communication; older individuals reported more positive communication and experiences overall, but less opportunity to share concerns; and more educated individuals were less likely to report positive communication but more likely to report resolution of doubts and overall positive experiences. Preventive care visits were rated higher than curative visits for resolution of doubts, but lower for opportunity to share concerns, and specific conditions were associated with better or worse reported experiences in some cases.ConclusionQuality improvement efforts at IMSS facilities might bolster individual experiences with primary care, given that up to 12% of the variation in experience was attributable to facility-level differences. The relationship between individual characteristics and experience ratings reinforces the importance of patients’ expectations of care and the potential for differential treatment by providers to impact experience.
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Giordano, Sharon H., Kai-Ping Eric Liao, Liang Li, Daria Zorzi, Mariana Chavez-MacGregor, and Susan K. Peterson. "Patient reported outcomes in older breast cancer survivors." Journal of Clinical Oncology 38, no. 15_suppl (May 20, 2020): 12072. http://dx.doi.org/10.1200/jco.2020.38.15_suppl.12072.
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12072 Background: The majority of breast cancer patients are age 66 years or older at diagnosis, yet little is known about the symptom burden of older breast cancer survivors. Methods: Using the same process as for SEER-Medicare, data from the Texas Cancer Registry (TCR) and Medicare claims were linked. From this TCR-Medicare dataset, patients age 65 years and older at diagnosis, with localized or regional breast cancer, diagnosed in 2012 and 2013, and still alive in 2018 were identified. To assess long-term outcomes, a mailed survey, which included selected questions from the NCI’s PRO-CTCAE question bank, was sent to 4591 eligible patients along with a $10 gift card. Non-responders were sent a follow-up questionnaire at 4-6 weeks and 8-10 weeks after initial mailing. The percentage reporting symptoms, overall and by treatment received, are described. Results: 1594 survivors completed the questionnaire (35% response rate). Median time from diagnosis to survey completion was 67 months. 70% of responders were age 65-74, 26% age 75-84, and 3% age 85+ at diagnosis. 84% were non-Hispanic white, 6% black, and 9% Hispanic. 77% had localized stage disease and 23% had regional disease at diagnosis. 58% had lumpectomy, 36% had mastectomy, and 2% reported no surgery. 77% had ER+ breast cancer. 28% received adjuvant chemotherapy. 48% had Part D claims for adjuvant endocrine therapy. PROs are reported in Table, overall and by use of chemotherapy and endocrine therapy. Conclusions: Older breast cancer survivors, particularly those who were treated with chemotherapy, experience a high symptom burden. [Table: see text]
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McCaffer, Craig J., Catriona M. Douglas, Anand Kasbaker, Robin Crosbie, David Blaeco, and Swee W. Kang. "Four-Year Experience of Day Case Hemithyroidectomy: Patient-Reported Outcomes." Otolaryngology–Head and Neck Surgery 151, no. 1_suppl (September 2014): P166. http://dx.doi.org/10.1177/0194599814541629a90.
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Bode, Rita K., Elizabeth A. Hahn, Robert DeVellis, and David Cella. "Measuring Participation: The Patient-Reported Outcomes Measurement Information System Experience." Archives of Physical Medicine and Rehabilitation 91, no. 9 (September 2010): S60—S65. http://dx.doi.org/10.1016/j.apmr.2009.10.035.
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