Patient-Patient Centered Outcomes Research最新文献

{"title":"Taking the Shortcut: Simplifying Heuristics in Discrete Choice Experiments.","authors":"Jorien Veldwijk,&nbsp;Stella Maria Marceta,&nbsp;Joffre Dan Swait,&nbsp;Stefan Adriaan Lipman,&nbsp;Esther Wilhelmina de Bekker-Grob","doi":"10.1007/s40271-023-00625-y","DOIUrl":"https://doi.org/10.1007/s40271-023-00625-y","url":null,"abstract":"<p><p>Health-related discrete choice experiments (DCEs) information can be used to inform decision-making on the development, authorisation, reimbursement and marketing of drugs and devices as well as treatments in clinical practice. Discrete choice experiment is a stated preference method based on random utility theory (RUT), which imposes strong assumptions on respondent choice behaviour. However, respondents may use choice processes that do not adhere to the normative rationality assumptions implied by RUT, applying simplifying decision rules that are more selective in the amount and type of processed information (i.e., simplifying heuristics). An overview of commonly detected simplifying heuristics in health-related DCEs is lacking, making it unclear how to identify and deal with these heuristics; more specifically, how researchers might alter DCE design and modelling strategies to accommodate for the effects of heuristics. Therefore, the aim of this paper is three-fold: (1) provide an overview of common simplifying heuristics in health-related DCEs, (2) describe how choice task design and context as well as target population selection might impact the use of heuristics, (3) outline DCE design strategies that recognise the use of simplifying heuristics and develop modelling strategies to demonstrate the detection and impact of simplifying heuristics in DCE study outcomes.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":"16 4","pages":"301-315"},"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/07/b9/40271_2023_Article_625.PMC10287580.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9706080","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":"Physical Activity Preferences of People Living with Brain Injury: Formative Qualitative Research to Develop a Discrete Choice Experiment.","authors":"Abby Haynes,&nbsp;Kirsten Howard,&nbsp;Liam Johnson,&nbsp;Gavin Williams,&nbsp;Kelly Clanchy,&nbsp;Sean Tweedy,&nbsp;Adam Scheinberg,&nbsp;Sakina Chagpar,&nbsp;Belinda Wang,&nbsp;Gabrielle Vassallo,&nbsp;Rhys Ashpole,&nbsp;Catherine Sherrington,&nbsp;Leanne Hassett","doi":"10.1007/s40271-023-00628-9","DOIUrl":"https://doi.org/10.1007/s40271-023-00628-9","url":null,"abstract":"<p><strong>Background and objective: </strong>The World Health Organization physical activity guidelines for people living with disability do not consider the needs of people living with moderate-to-severe traumatic brain injury. This paper describes the qualitative co-development of a discrete choice experiment survey to inform the adaption of these guidelines by identifying the physical activity preferences of people living with moderate-to-severe traumatic brain injury in Australia.</p><p><strong>Methods: </strong>The research team comprised researchers, people with lived experience of traumatic brain injury and health professionals with expertise in traumatic brain injury. We followed a four-stage process: (1) identification of key constructs and initial expression of attributes, (2) critique and refinement of attributes, (3) prioritisation of attributes and refinement of levels and (4) testing and refining language, format and comprehensibility. Data collection included deliberative dialogue, focus groups and think-aloud interviews with 22 purposively sampled people living with moderate-to-severe traumatic brain injury. Strategies were used to support inclusive participation. Analysis employed qualitative description and framework methods.</p><p><strong>Results: </strong>This formative process resulted in discarding, merging, renaming and reconceptualising attributes and levels. Attributes were reduced from an initial list of 17 to six: (1) Type of activity, (2) Out-of-pocket cost, (3) Travel time, (4) Who with, (5) Facilitated by and (6) Accessibility of setting. Confusing terminology and cumbersome features of the survey instrument were also revised. Challenges included purposive recruitment, reducing diverse stakeholder views to a few attributes, finding the right language and navigating the complexity of discrete choice experiment scenarios.</p><p><strong>Conclusions: </strong>This formative co-development process significantly improved the relevance and comprehensibility of the discrete choice experiment survey tool. This process may be applicable in other discrete choice experiment studies.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":"16 4","pages":"385-398"},"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/b8/5e/40271_2023_Article_628.PMC10196322.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9687205","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":"Individual Differences in the Patient Experience of Relapsing Multiple Sclerosis (RMS): A Multi-Country Qualitative Exploration of Drivers of Treatment Preferences Among People Living with RMS.","authors":"Sophi Tatlock,&nbsp;Kate Sully,&nbsp;Anjali Batish,&nbsp;Chelsea Finbow,&nbsp;William Neill,&nbsp;Carol Lines,&nbsp;Roisin Brennan,&nbsp;Nicholas Adlard,&nbsp;Tamara Backhouse","doi":"10.1007/s40271-023-00617-y","DOIUrl":"https://doi.org/10.1007/s40271-023-00617-y","url":null,"abstract":"<p><strong>Aims: </strong>The aim of this study was to explore the experiences, values and preferences of people living with relapsing multiple sclerosis (PLwRMS) focusing on their treatments and what drives their treatment preferences.</p><p><strong>Methods: </strong>In-depth, semi-structured, qualitative telephone interviews were conducted using a purposive sampling approach with 72 PLwRMS and 12 health care professionals (HCPs, MS specialist neurologists and nurses) from the United Kingdom, United States, Australia and Canada. Concept elicitation questioning was used to elicit PLwRMS' attitudes, beliefs and preferences towards features of disease-modifying treatments. Interviews with HCPs were conducted to inform on HCPs' experiences of treating PLwRMS. Responses were audio recorded and transcribed verbatim and then subjected to thematic analysis.</p><p><strong>Results: </strong>Participants discussed numerous concepts that were important to them when making treatment decisions. Levels of importance participants placed on each concept, as well as reasons underpinning importance, varied substantially. The concepts with the greatest variability in terms of how much PLwRMS found them to be important in their decision-making process were mode of administration, speed of treatment effect, impact on reproduction and parenthood, impact on work and social life, patient engagement in decision making, and cost of treatment to the participant. Findings also demonstrated high variability in what participants described as their ideal treatment and the most important features a treatment should have. HCP findings provided clinical context for the treatment decision-making process and supported patient findings.</p><p><strong>Conclusions: </strong>Building upon previous stated preference research, this study highlighted the importance of qualitative research in understanding what drives patient preferences. Characterized by the heterogeneity of the RMS patient experience, findings indicate the nature of treatment decisions in RMS to be highly individualized, and the subjective relative importance placed on different treatment factors by PLwRMS to vary. Such qualitative patient preference evidence could offer valuable and supplementary insights, alongside quantitative data, to inform decision making related to RMS treatment.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":"16 4","pages":"345-357"},"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/55/58/40271_2023_Article_617.PMC10074350.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9681812","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":"Correction to: 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/s40271-023-00633-y","DOIUrl":"https://doi.org/10.1007/s40271-023-00633-y","url":null,"abstract":"","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":"16 4","pages":"343"},"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":"16 4","pages":"289-292"},"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":"16 4","pages":"359-369"},"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":"16 4","pages":"317-341"},"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":"16 4","pages":"399-413"},"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":"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}

{"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}