Patient-Patient Centered Outcomes Research最新文献

{"title":"Correction to: Do Cash-For-Care Schemes Increase Care Users' Experience of Empowerment? A Systematic Review.","authors":"Eva Pattyn, Paul Gemmel, Sophie Vandepitte, Jeroen Trybou","doi":"10.1007/s40271-023-00633-y","DOIUrl":"https://doi.org/10.1007/s40271-023-00633-y","url":null,"abstract":"","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":null,"pages":null},"PeriodicalIF":3.6,"publicationDate":"2023-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9674527","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Comment on: Taking the Shortcut: Simplifying Heuristics in Discrete Choice Experiments.","authors":"F Reed Johnson","doi":"10.1007/s40271-023-00629-8","DOIUrl":"https://doi.org/10.1007/s40271-023-00629-8","url":null,"abstract":"","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":null,"pages":null},"PeriodicalIF":3.6,"publicationDate":"2023-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10040633","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Patient-Centered Clinical Trial Design for Heart Failure Devices via Bayesian Decision Analysis.","authors":"Shomesh E Chaudhuri,&nbsp;Phillip Adamson,&nbsp;Dean Bruhn-Ding,&nbsp;Zied Ben Chaouch,&nbsp;David Gebben,&nbsp;Liliana Rincon-Gonzalez,&nbsp;Barry Liden,&nbsp;Shelby D Reed,&nbsp;Anindita Saha,&nbsp;Daniel Schaber,&nbsp;Kenneth Stein,&nbsp;Michelle E Tarver,&nbsp;Andrew W Lo","doi":"10.1007/s40271-023-00623-0","DOIUrl":"https://doi.org/10.1007/s40271-023-00623-0","url":null,"abstract":"<p><strong>Background: </strong>The statistical significance of clinical trial outcomes is generally interpreted quantitatively according to the same threshold of 2.5% (in one-sided tests) to control the false-positive rate or type I error, regardless of the burden of disease or patient preferences. The clinical significance of trial outcomes-including patient preferences-are also considered, but through qualitative means that may be challenging to reconcile with the statistical evidence.</p><p><strong>Objective: </strong>We aimed to apply Bayesian decision analysis to heart failure device studies to choose an optimal significance threshold that maximizes the expected utility to patients across both the null and alternative hypotheses, thereby allowing clinical significance to be incorporated into statistical decisions either in the trial design stage or in the post-trial interpretation stage. In this context, utility is a measure of how much well-being the approval decision for the treatment provides to the patient.</p><p><strong>Methods: </strong>We use the results from a discrete-choice experiment study focusing on heart failure patients' preferences, questioning respondents about their willingness to accept therapeutic risks in exchange for quantifiable benefits with alternative hypothetical medical device performance characteristics. These benefit-risk trade-off data allow us to estimate the loss in utility-from the patient perspective-of a false-positive or false-negative pivotal trial result. We compute the Bayesian decision analysis-optimal statistical significance threshold that maximizes the expected utility to heart failure patients for a hypothetical two-arm, fixed-sample, randomized controlled trial. An interactive Excel-based tool is provided that illustrates how the optimal statistical significance threshold changes as a function of patients' preferences for varying rates of false positives and false negatives, and as a function of assumed key parameters.</p><p><strong>Results: </strong>In our baseline analysis, the Bayesian decision analysis-optimal significance threshold for a hypothetical two-arm randomized controlled trial with a fixed sample size of 600 patients per arm was 3.2%, with a statistical power of 83.2%. This result reflects the willingness of heart failure patients to bear additional risks of the investigational device in exchange for its probable benefits. However, for increased device-associated risks and for risk-averse subclasses of heart failure patients, Bayesian decision analysis-optimal significance thresholds may be smaller than 2.5%.</p><p><strong>Conclusions: </strong>A Bayesian decision analysis is a systematic, transparent, and repeatable process for combining clinical and statistical significance, explicitly incorporating burden of disease and patient preferences into the regulatory decision-making process.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":null,"pages":null},"PeriodicalIF":3.6,"publicationDate":"2023-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10039135","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Do Cash-For-Care Schemes Increase Care Users' Experience of Empowerment? A Systematic Review.","authors":"Eva Pattyn,&nbsp;Paul Gemmel,&nbsp;Sophie Vandepitte,&nbsp;Jeroen Trybou","doi":"10.1007/s40271-023-00624-z","DOIUrl":"https://doi.org/10.1007/s40271-023-00624-z","url":null,"abstract":"<p><strong>Background: </strong>In cash-for-care schemes, care users are granted a budget or given a voucher to purchase care services, under the assumption that this will enable them to become engaged and empowered customers, leading to more person-centered care. However, opponents of such schemes argue that the responsibility of organizing care is thereby shifted from governments to care users, thus reducing care users' experience of empowerment. The tension between these opposing discourses supposes that other factors affect care users' experience of empowerment.</p><p><strong>Objective: </strong>This systematic review explores the experiences of empowerment and person-centered care of budget holders in cash-for-care schemes and the antecedents that can affect this experience.</p><p><strong>Method: </strong>We screened seven databases up to October 10, 2022. To be included, articles needed to be peer-reviewed, written in English or French, and contain empirical evidence of the experience of empowerment of budget holders in the form of qualitative or quantitative data.</p><p><strong>Results: </strong>The initial search identified 10,966 records of which 90 articles were retained for inclusion. The results show that several contextual and personal characteristics determine whether cash-for-care schemes increase empowerment. The identified contextual factors are establishing a culture of change, supportive financial climate, flexible regulatory framework, and access to support and information. The identified personal characteristics refer to the financial, social, and personal resources of the care user.</p><p><strong>Conclusion: </strong>This review confirms that multiple factors can affect care users' experience of empowerment. However, active cooperation and communication between care user and care provider are essential if policy makers wish to increase care users' experience of empowerment.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":null,"pages":null},"PeriodicalIF":3.6,"publicationDate":"2023-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9736258","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"14th Meeting of the International Academy of Health Preference Research.","authors":"","doi":"10.1007/s40271-023-00636-9","DOIUrl":"https://doi.org/10.1007/s40271-023-00636-9","url":null,"abstract":"","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":null,"pages":null},"PeriodicalIF":3.6,"publicationDate":"2023-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9683737","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"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":null,"pages":null},"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}

{"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":null,"pages":null},"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}

{"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":null,"pages":null},"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}

{"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":null,"pages":null},"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}

{"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":null,"pages":null},"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}