Patient-Patient Centered Outcomes Research最新文献

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Cancer Survivor Preferences for Models of Breast Cancer Follow-Up Care: Selecting Attributes for Inclusion in a Discrete Choice Experiment. 癌症幸存者对乳腺癌随访护理模型的偏好:在离散选择实验中选择包含的属性。
IF 3.6 3区 医学
Patient-Patient Centered Outcomes Research Pub Date : 2023-07-01 DOI: 10.1007/s40271-023-00631-0
Sanjeewa Kularatna, Michelle Allen, Ruvini M Hettiarachchi, Fiona Crawford-Williams, Sameera Senanayake, David Brain, Nicolas H Hart, Bogda Koczwara, Carolyn Ee, Raymond J Chan
{"title":"Cancer Survivor Preferences for Models of Breast Cancer Follow-Up Care: Selecting Attributes for Inclusion in a Discrete Choice Experiment.","authors":"Sanjeewa Kularatna,&nbsp;Michelle Allen,&nbsp;Ruvini M Hettiarachchi,&nbsp;Fiona Crawford-Williams,&nbsp;Sameera Senanayake,&nbsp;David Brain,&nbsp;Nicolas H Hart,&nbsp;Bogda Koczwara,&nbsp;Carolyn Ee,&nbsp;Raymond J Chan","doi":"10.1007/s40271-023-00631-0","DOIUrl":"https://doi.org/10.1007/s40271-023-00631-0","url":null,"abstract":"<p><strong>Background and objective: </strong>It is critical to evaluate cancer survivors' preferences when developing follow-up care models to better address the needs of cancer survivors. This study was conducted to understand the key attributes of breast cancer follow-up care for use in a future discrete choice experiment (DCE) survey.</p><p><strong>Methods: </strong>Key attributes of breast cancer follow-up care models were generated using a multi-stage, mixed-methods approach. Focus group discussions were conducted with cancer survivors and clinicians to generate a range of attributes of current and ideal follow-up care. These attributes were then prioritised using an online survey with survivors and healthcare providers. The DCE attributes and levels were finalised via an expert panel discussion based on the outcomes of the previous stages.</p><p><strong>Results: </strong>Four focus groups were held, two with breast cancer survivors (n = 7) and two with clinicians (n = 8). Focus groups generated sixteen attributes deemed important for breast cancer follow-up care models. The prioritisation exercise was conducted with 20 participants (14 breast cancer survivors and 6 clinicians). Finally, the expert panel selected five attributes for a future DCE survey tool to elicit cancer survivors' preferences on breast cancer follow-up care. The final attributes included: the care team, allied health and supportive care, survivorship care planning, travel for appointments, and out-of-pocket costs.</p><p><strong>Conclusions: </strong>Attributes identified can be used in future DCE studies to elicit cancer survivors' preferences for breast cancer follow-up care. This strengthens the design and implementation of follow-up care programs that best suit the needs and expectations of breast cancer survivors.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":"16 4","pages":"371-383"},"PeriodicalIF":3.6,"publicationDate":"2023-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/f5/98/40271_2023_Article_631.PMC10201515.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9687218","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
The Impact of Video-Based Educational Materials with Voiceovers on Preferences for Glucose Monitoring Technology in Patients with Diabetes: A Randomised Study. 带画外音的视频教育材料对糖尿病患者血糖监测技术偏好的影响:一项随机研究
IF 3.6 3区 医学
Patient-Patient Centered Outcomes Research Pub Date : 2023-05-01 DOI: 10.1007/s40271-022-00612-9
Ian P Smith, Chiara L Whichello, Esther W de Bekker-Grob, Maureen P M H Rutten-van Mölken, Jorien Veldwijk, G Ardine de Wit
{"title":"The Impact of Video-Based Educational Materials with Voiceovers on Preferences for Glucose Monitoring Technology in Patients with Diabetes: A Randomised Study.","authors":"Ian P Smith,&nbsp;Chiara L Whichello,&nbsp;Esther W de Bekker-Grob,&nbsp;Maureen P M H Rutten-van Mölken,&nbsp;Jorien Veldwijk,&nbsp;G Ardine de Wit","doi":"10.1007/s40271-022-00612-9","DOIUrl":"https://doi.org/10.1007/s40271-022-00612-9","url":null,"abstract":"<p><strong>Introduction: </strong>Ensuring patients have enough information about healthcare choices prior to completing a preference study is necessary to support the validity of the findings. Patients are commonly informed using text-based information with supporting graphics. Video-based information may be more engaging for the general patient population. This study aimed to assess (1) the impact that educating patients using video-based educational materials with a voiceover has on patient preferences compared to traditional text, and (2) whether this impact is consistent between two countries.</p><p><strong>Materials and methods: </strong>A video-based educational tool was developed to inform patients prior to completing a discrete choice experiment assessing preferences for glucose monitors. Patients with diabetes from the Netherlands and Poland were recruited through an online research panel. Respondents were randomised to receive information in either a text or a video with animations and a voiceover. Data were analysed using a mixed-logit model.</p><p><strong>Results: </strong>N = 981 completed surveys were analysed from the Netherlands (n = 459) and Poland (n = 522). Differences were found between the countries, but no interpretable pattern of differences was found between the two types of educational materials. Patients spent less time in the educational material than would be necessary to fully review all of the content.</p><p><strong>Conclusions: </strong>Simply providing educational material in a video with animations and voiceovers does not necessarily lead to better engagement from respondents or different preference outcomes in a sample of diabetes patients when compared to text. Increasing engagement with educational materials should be a topic of future research for those conducting patient preference research as no amount of educational material will be helpful if respondents do not access it.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":"16 3","pages":"223-237"},"PeriodicalIF":3.6,"publicationDate":"2023-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/cb/67/40271_2022_Article_612.PMC10121708.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9402055","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Ability and Willingness to Participate in Dementia Clinical Research: A Qualitative Study. 参与痴呆临床研究的能力和意愿:一项定性研究。
IF 3.6 3区 医学
Patient-Patient Centered Outcomes Research Pub Date : 2023-05-01 DOI: 10.1007/s40271-023-00621-2
Nicole Bouranis, Sherril Gelmon, Allison Lindauer
{"title":"Ability and Willingness to Participate in Dementia Clinical Research: A Qualitative Study.","authors":"Nicole Bouranis,&nbsp;Sherril Gelmon,&nbsp;Allison Lindauer","doi":"10.1007/s40271-023-00621-2","DOIUrl":"https://doi.org/10.1007/s40271-023-00621-2","url":null,"abstract":"<p><strong>Background and objective: </strong>Dementia clinical research studies have difficulty recruiting and enrolling participants and their study partners. Through convening and working with a community advisory board and the incorporation of the perspectives of people living with dementia and caregivers, this study utilized a community-engaged approach to identify factors affecting dementia clinical research participation.</p><p><strong>Methods: </strong>In this qualitative study, 24 participants (12 people living with dementia and 12 caregivers), half of whom participated in dementia clinical research, were interviewed. Deductive and inductive approaches to thematic analysis were conducted to identify themes.</p><p><strong>Results: </strong>Ten themes were organized into two categories. Factors affecting ability to participate include symptom recognition and diagnosis, knowledge of opportunities, ineligibility/disenrollment, time/distance, caregiver burden, and online searches for study opportunities. Factors affecting willingness to participate include helping others, living life to the fullest, caregiver support, and taking study drugs.</p><p><strong>Conclusions: </strong>When combined with a reframing of factors affecting dementia clinical research enrollment within the context of ability and willingness to participate, these findings may be useful for elucidating factors and developing strategies to enhance participation in clinical research and advance efforts dedicated to finding effective treatments for dementia.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":"16 3","pages":"277-285"},"PeriodicalIF":3.6,"publicationDate":"2023-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10052265/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9403077","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Focus Groups to Inform the Development of a Patient-Reported Outcome Measure (PROM) for Temporomandibular Joint Disorders (TMDs). 焦点小组为颞下颌关节疾病(TMDs)患者报告的结果测量(PROM)的发展提供信息。
IF 3.6 3区 医学
Patient-Patient Centered Outcomes Research Pub Date : 2023-05-01 DOI: 10.1007/s40271-023-00618-x
Emily Elstad, Fraser D Bocell, Tamika Cowans Owens, Dilani Logan, Emily Melluso, Claire Viscione, San Keller, Allen Chen, Jessica Weinberg, Veronica Sansing-Foster, Leah Royce, Phillip Woods, Andrew I Steen, Adriana Van Ineveld, Michelle Reardon, Allen Cowley, John Kusiak, Deanne Clare, Terrie Cowley, Michelle E Tarver
{"title":"Focus Groups to Inform the Development of a Patient-Reported Outcome Measure (PROM) for Temporomandibular Joint Disorders (TMDs).","authors":"Emily Elstad,&nbsp;Fraser D Bocell,&nbsp;Tamika Cowans Owens,&nbsp;Dilani Logan,&nbsp;Emily Melluso,&nbsp;Claire Viscione,&nbsp;San Keller,&nbsp;Allen Chen,&nbsp;Jessica Weinberg,&nbsp;Veronica Sansing-Foster,&nbsp;Leah Royce,&nbsp;Phillip Woods,&nbsp;Andrew I Steen,&nbsp;Adriana Van Ineveld,&nbsp;Michelle Reardon,&nbsp;Allen Cowley,&nbsp;John Kusiak,&nbsp;Deanne Clare,&nbsp;Terrie Cowley,&nbsp;Michelle E Tarver","doi":"10.1007/s40271-023-00618-x","DOIUrl":"https://doi.org/10.1007/s40271-023-00618-x","url":null,"abstract":"<p><strong>Background: </strong>Understanding symptoms of temporomandibular joint disorders (TMDs) can help doctors and patients document, monitor, and manage the disease and help researchers evaluate interventions. Patients with TMDs experience symptoms ranging from mild to severe, primarily in the head and neck region. This study describes findings from formative patient focus groups to capture, categorize, and prioritize symptoms of TMDs towards the development of a patient-reported outcome measure (PROM).</p><p><strong>Methods: </strong>We conducted ten focus groups with 40 men and women with mild, moderate, and severe TMD. Focus groups elicited descriptions of symptoms and asked participants to review a list of existing patient-reported outcomes (PROs) from the literature and patient advisor input and speak to how those PROs reflect their own experience, including rating their importance.</p><p><strong>Results: </strong>We identified 52 distinct concepts across six domains: somatic, physical, social, sexual, affective, and sleep. Focus groups identified the ability to chew and eat; clicking, popping, and other jaw noises; jaw pain and headaches; jaw misalignment or dislocation; grinding, clenching, or chewing, including at night; and ear sensations as most important. Participants with severe TMDs more often reported affective concepts like depression and shame than did participants with mild or moderate TMDs.</p><p><strong>Conclusion: </strong>Findings support PROM item development for TMDs, including selecting existing PROMs or developing new ones that reflect patients' lived experiences, priorities, and preferred terminology. Such measures are needed to increase understanding of TMDs, promote accurate diagnosis and effective treatment, and help advance research on TMDs.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":"16 3","pages":"265-276"},"PeriodicalIF":3.6,"publicationDate":"2023-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9961303/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9755542","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Improving Outcome-Driven Care in Multiple Myeloma Using Patient-Reported Outcomes: A Qualitative Evaluation Study. 利用患者报告的结果改善多发性骨髓瘤的结果驱动治疗:一项定性评价研究。
IF 3.6 3区 医学
Patient-Patient Centered Outcomes Research Pub Date : 2023-05-01 DOI: 10.1007/s40271-023-00616-z
Christine Bennink, Marleen de Mul, Marjolein van der Klift, Annemiek Broijl, Lidwine Tick, Eva de Jongh, Mirjam Garvelink, Dorien Lobbezoo, Pieter Sonneveld, Jan Hazelzet
{"title":"Improving Outcome-Driven Care in Multiple Myeloma Using Patient-Reported Outcomes: A Qualitative Evaluation Study.","authors":"Christine Bennink,&nbsp;Marleen de Mul,&nbsp;Marjolein van der Klift,&nbsp;Annemiek Broijl,&nbsp;Lidwine Tick,&nbsp;Eva de Jongh,&nbsp;Mirjam Garvelink,&nbsp;Dorien Lobbezoo,&nbsp;Pieter Sonneveld,&nbsp;Jan Hazelzet","doi":"10.1007/s40271-023-00616-z","DOIUrl":"https://doi.org/10.1007/s40271-023-00616-z","url":null,"abstract":"<p><strong>Background and objective: </strong>Multiple myeloma is an incurable disease with a considerable illness and treatment burden, which negatively impacts patients' quality of life. This study aimed to evaluate the implementation of multiple myeloma care in five Dutch hospitals, related to the three objectives of outcome-driven care, which are defined as (1) providing information for shared decision making in individual patient care, (2) supporting the learning capacity of healthcare professionals and healthcare institutions through benchmarking and (3) developing outcome-driven and patient-centred contracting by health insurers.</p><p><strong>Methods: </strong>In this qualitative study, semi-structured interviews about experiences with patient-reported outcomes were conducted with patients, healthcare professionals and other stakeholders 2 years after implementation. Data were thematically analysed, and emerging topics were clustered around the three objectives of outcome-driven care.</p><p><strong>Results: </strong>A total of 46 interviews were held (15 with patients, 16 with professionals and 15 with other stakeholders) that showed patients with multiple myeloma were willing to complete patient-reported outcomes, although integration of patient-reported outcomes in shared decision making fell short in clinical practice. Aggregated patient-reported outcomes were considered important for improving quality of care; however, data collection and data exchange are hindered by privacy legislation, limitations of IT systems and a lack of data standards. Patient-reported outcomes were expected to contribute to cost-effective multiple myeloma treatment, yet outcome-driven reimbursement is still lacking.</p><p><strong>Conclusions: </strong>Outcome-driven multiple myeloma care using patient-reported outcomes is feasible, provided that (1) patient-reported outcomes and shared decision making are integrated into clinical practice, (2) legal and technical obstacles hindering data collection are removed and (3) health insurers adjust their reimbursement plans to facilitate outcome-driven care.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":"16 3","pages":"255-264"},"PeriodicalIF":3.6,"publicationDate":"2023-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/71/ad/40271_2023_Article_616.PMC9930010.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10287592","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 1
The Pogo-ization of Post-Pandemic Vaccine Policy. 大流行后疫苗政策的pogo化。
IF 3.6 3区 医学
Patient-Patient Centered Outcomes Research Pub Date : 2023-05-01 DOI: 10.1007/s40271-023-00626-x
Peter J Pitts
{"title":"The Pogo-ization of Post-Pandemic Vaccine Policy.","authors":"Peter J Pitts","doi":"10.1007/s40271-023-00626-x","DOIUrl":"https://doi.org/10.1007/s40271-023-00626-x","url":null,"abstract":"","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":"16 3","pages":"179-181"},"PeriodicalIF":3.6,"publicationDate":"2023-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10092907/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9445079","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 1
Correction to: How Does the Public Evaluate Vaccines for Low‑Incidence, Severe‑Outcome Diseases? A General‑Population Choice Experiment. 更正:公众如何评价低发病率、严重结局疾病的疫苗?一般人口选择实验。
IF 3.6 3区 医学
Patient-Patient Centered Outcomes Research Pub Date : 2023-05-01 DOI: 10.1007/s40271-023-00620-3
F Reed Johnson, Angelyn Fairchild, Dale Whittington, Amit K Srivastava, Juan Marcos Gonzalez, Liping Huang
{"title":"Correction to: How Does the Public Evaluate Vaccines for Low‑Incidence, Severe‑Outcome Diseases? A General‑Population Choice Experiment.","authors":"F Reed Johnson,&nbsp;Angelyn Fairchild,&nbsp;Dale Whittington,&nbsp;Amit K Srivastava,&nbsp;Juan Marcos Gonzalez,&nbsp;Liping Huang","doi":"10.1007/s40271-023-00620-3","DOIUrl":"https://doi.org/10.1007/s40271-023-00620-3","url":null,"abstract":"","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":"16 3","pages":"287"},"PeriodicalIF":3.6,"publicationDate":"2023-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10320800/pdf/40271_2023_Article_620.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10116511","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
So You Want to Build Your Disease's First Online Patient Registry: An Educational Guide for Patient Organizations Based on US and European Experience. 所以你想建立你的疾病的第一个在线患者注册:基于美国和欧洲经验的患者组织教育指南。
IF 3.6 3区 医学
Patient-Patient Centered Outcomes Research Pub Date : 2023-05-01 DOI: 10.1007/s40271-023-00619-w
Paul Wicks, Lindsey Wahlstrom-Edwards, Sam Fillingham, Andrea Downing, Elin Haf Davies
{"title":"So You Want to Build Your Disease's First Online Patient Registry: An Educational Guide for Patient Organizations Based on US and European Experience.","authors":"Paul Wicks,&nbsp;Lindsey Wahlstrom-Edwards,&nbsp;Sam Fillingham,&nbsp;Andrea Downing,&nbsp;Elin Haf Davies","doi":"10.1007/s40271-023-00619-w","DOIUrl":"https://doi.org/10.1007/s40271-023-00619-w","url":null,"abstract":"<p><p>Patient registries fulfill a number of key roles for clinicians, researchers, non-profit organizations, payers, and policy makers. They can help the field understand the natural history of a condition, determine the effectiveness of interventions, measure safety, and audit the quality of care provided. Successful registries in cystic fibrosis, Duchenne's muscular dystrophy, and other rare diseases have become a model for accelerating progress. However, the complex tasks required to develop a modern registry can seem overwhelming, particularly for those who are not from a technical background. In this Education article, a team of co-authors from across patient advocacy, technology, privacy, and commercial perspectives who have worked on a number of such projects offer a \"Registry 101\" primer to help get started. We will outline the promise and potential of patient registries with worked case examples, identify some of the key technical considerations you will need to consider, describe the type of data you might want to collect, consider privacy risks to protect your users, sketch out some of the paths towards long-term financial sustainability we have observed, and conclude with plans to mitigate some of the challenges that can occur and signpost interested readers to further resources. While rapid growth in the digital health market has presented numerous opportunities to those at the beginning of their journey, it is important to start with the long-term goals in mind and to benefit from the learnings of those who have walked this path before.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":"16 3","pages":"183-199"},"PeriodicalIF":3.6,"publicationDate":"2023-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/90/80/40271_2023_Article_619.PMC10031688.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9408914","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Systematic Review of the Effect of a One-Day Versus Seven-Day Recall Duration on Patient Reported Outcome Measures (PROMs). 1天与7天回忆时间对患者报告结果测量(PROMs)影响的系统评价。
IF 3.6 3区 医学
Patient-Patient Centered Outcomes Research Pub Date : 2023-05-01 DOI: 10.1007/s40271-022-00611-w
Tessa Peasgood, Julia M Caruana, Clara Mukuria
{"title":"Systematic Review of the Effect of a One-Day Versus Seven-Day Recall Duration on Patient Reported Outcome Measures (PROMs).","authors":"Tessa Peasgood,&nbsp;Julia M Caruana,&nbsp;Clara Mukuria","doi":"10.1007/s40271-022-00611-w","DOIUrl":"https://doi.org/10.1007/s40271-022-00611-w","url":null,"abstract":"&lt;p&gt;&lt;strong&gt;Background: &lt;/strong&gt;There is ongoing uncertainty around the most suitable recall period for patient-reported outcome measures (PROMs).&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Method: &lt;/strong&gt;This systematic review integrates quantitative and qualitative literature across health, economics, and psychology to explore the effect of a one-day (or '24-h') versus seven-day (or 'one week') recall period. The following databases were searched from database inception to 30 November 2021: MEDLINE, EMBASE, PsycINFO, Web of Science, EconLit, CINAHL Complete, Cochrane Library, and Sociological Abstracts. Studies were included that compared a one-day (or '24-h') versus seven-day (or weekly) recall period condition on patient-reported scores for PROM and Health-Related Quality-of-Life (HRQoL) instrument scores in adult populations (aged 18 and above) or combined paediatric and adult populations with a majority of respondents aged over 18 years. Studies were excluded if they assessed health behaviours only, used ecological momentary assessment to derive an index of daily recall, or incorporated clinician reports of patient symptoms. We extracted results relevant to six domains with generic health relevance: physical functioning, pain, cognition, psychosocial wellbeing, sleep-related symptoms and aggregated disease-specific signs and symptoms. Quantitative studies compared weekly recall scores with the mean or maximum score over the last seven days or with the same-day recall score.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Results: &lt;/strong&gt;Overall, across the 24 quantitative studies identified, 158 unique results were identified. Symptoms tended to be reported as more severe and HRQoL lower when assessed with a weekly recall than a one-day recall. A narrative synthesis of 33 qualitative studies integrated patient perspectives on the suitability of a one-day versus seven-day recall period for assessing health state or quality of life. Participants had mixed preferences, some noted the accuracy of recall for the one-day period but others preferred the seven-day recall for conditions characterised by high symptom variability, or where PROMs concepts required integration of infrequent experiences or functioning over time.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Conclusion: &lt;/strong&gt;This review identified a clear trend toward higher symptom scores and worse quality of life being reported for a seven-day compared to a one-day recall. The review also identified anomalies in this pattern for some wellbeing items and a need for further research on positively framed items. A better understanding of the impact of using different recall periods within PROMs and HRQoL instruments will help contextualise future comparisons between instruments. Questionnaires ask patients about their health over different time periods (e.g., \"what were your symptoms like over the last week?\" versus \"what were your symptoms like today?\"). Studies find that people may report their symptoms as more severe when they are asked to think about their symptoms over t","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":"16 3","pages":"201-221"},"PeriodicalIF":3.6,"publicationDate":"2023-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/d9/96/40271_2022_Article_611.PMC10121527.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9755525","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 1
Comparing Outcomes of a Discrete Choice Experiment and Case 2 Best-Worst Scaling: An Application to Neuromuscular Disease Treatment. 比较离散选择实验和案例2最佳-最差标度的结果:在神经肌肉疾病治疗中的应用。
IF 3.6 3区 医学
Patient-Patient Centered Outcomes Research Pub Date : 2023-05-01 DOI: 10.1007/s40271-023-00615-0
Vikas Soekhai, Bas Donkers, Jennifer Viberg Johansson, Cecilia Jimenez-Moreno, Cathy Anne Pinto, G Ardine de Wit, Esther de Bekker-Grob
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