Alice Vanneste, Peter Sinnaeve, Isabelle Huys, Tom Adriaenssens, Christophe Garweg
{"title":"Patients' Needs and Preferences for Cardiac Pacemaker Implantation: A Qualitative Study on Disease and Medical Device Characteristics to Inform a Quantitative Preference Study.","authors":"Alice Vanneste, Peter Sinnaeve, Isabelle Huys, Tom Adriaenssens, Christophe Garweg","doi":"10.1007/s40271-025-00767-1","DOIUrl":"10.1007/s40271-025-00767-1","url":null,"abstract":"<p><strong>Background: </strong>Cardiac pacemakers are the only long-term treatment for symptomatic bradyarrhythmia. Despite technological advances, conventional pacemakers still face significant device and procedure-related complications. Recently, leadless pacing systems have been developed to address these issues.</p><p><strong>Objective: </strong>Given the benefits and risks of both pacemaker devices, patient preference studies (PPS) are valuable to understand patients' priorities. This study reports qualitative insights that are fundamental to informing the development of attributes and levels of a subsequent quantitative PPS.</p><p><strong>Methods: </strong>This qualitative phase of a PPS consisted of semi-structured interviews with pacemaker patients. To enhance preference validation, we applied a novel combined approach where patients both scored and ranked disease and treatment-related characteristics. Interviews were transcribed ad verbatim and analyzed using thematic framework analysis.</p><p><strong>Results: </strong>The study included 18 Belgian pacemaker patients (median age = 81 years, 56% being male). Our combined approach identified a stable set of six consistently prioritized characteristics: improvements in (i) dyspnea, (ii) fatigue, (iii) exercise intolerance, alongside device features including (iv) a long battery lifetime, (v) limited risk of long-term complications, and (vi) integration of the latest technology. In contrast, characteristics such as the device location and physical appearance were considered less important compared with the life-saving functionality and quality of life improvements. Patients generally trusted their physicians and showed relatively little interest in deciding the device type.</p><p><strong>Conclusions: </strong>Although patients were not actively concerned about their pacemaker treatment, they valued specific disease and treatment-related characteristics important to them. The patient-relevant characteristics identified in this study, derived directly from patients themselves, can inform device development and guide downstream evaluations to foster more informed, patient-centered decision-making that reflects patients' needs and preferences.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":" ","pages":""},"PeriodicalIF":3.1,"publicationDate":"2025-08-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144856956","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}
Carina Oedingen, Karen V MacDonald, Barry D Stein, Gerald Batist, Winson Y Cheung, Sharlene Gill, Benjamin A Goldenberg, Yoo-Joung Ko, Deborah A Marshall
{"title":"Patient Preferences for Metastatic Colorectal Cancer Treatment: A Multi-method Approach Using Discrete Choice Experiments and Best-Worst Scaling.","authors":"Carina Oedingen, Karen V MacDonald, Barry D Stein, Gerald Batist, Winson Y Cheung, Sharlene Gill, Benjamin A Goldenberg, Yoo-Joung Ko, Deborah A Marshall","doi":"10.1007/s40271-025-00760-8","DOIUrl":"https://doi.org/10.1007/s40271-025-00760-8","url":null,"abstract":"<p><strong>Background: </strong>Treatment decisions for metastatic colorectal cancer (mCRC) require patients to balance survival benefits, health-related quality of life (HRQoL), and potential risks of side effects while also factoring in their own preferences for different treatment options. Despite growing interest, quantitative patient preferences are not yet integrated into health technology assessments (HTAs) for drug reimbursement recommendations.</p><p><strong>Objectives: </strong>The Colorectal Cancer Canada's Patient Values Project aims to explore approaches to incorporate quantitative patient preferences into cancer treatment HTA decision-making processes. As a first step, we elicited the treatment preferences and risk tolerance of patients with mCRC in Canada using a multi-method approach.</p><p><strong>Methods: </strong>We developed a preference survey that included two discrete choice experiments (DCEs) and case 1 best-worst scaling (BWS-1) to estimate preferences for mCRC treatments. DCE1 included change in HRQoL and overall survival as attributes, and treatment attributes in DCE2 were administration and frequency, side effects (nausea, pain, diarrhea), and progression-free survival. The BWS-1 included 25 attributes of potential mCRC treatment side effects based on the cancer-specific quality-of-life questionnaire. The survey was administered across Canada to patients with mCRC aged ≥ 18 years with a self-reported diagnosis of mCRC through patient organizations, cancer centers, and an online panel. Data were analyzed using mixed logit and latent class models (DCEs) and count-based analysis (BWS-1).</p><p><strong>Results: </strong>Overall, 127 patients with mCRC completed the full survey (n = 143 fully completed DCE1, n = 108 fully completed DCE2, n = 127 fully completed BWS-1). Relative preferences for the treatment attributes in the study were consistent with the expectation that better clinical outcomes were preferred over worse clinical outcomes. In DCE1, patients valued both overall survival (24 vs. 12 months) and HRQoL (improvement to 90 vs. worsens to 50 out of 100) as almost equally important. In DCE2, patients preferred better outcomes (longer progression-free survival and no side effects) over worse outcomes, with a disutility for oral capsules/pills compared with intravenous infusions. Significant preference heterogeneity was observed depending on experiences with CRC treatments, treatment side effects, and health status. In the BWS-1, \"need help with eating, dressing, washing yourself or using the toilet\", \"vomiting\", and \"pain\" were ranked as the least and \"need to rest\", \"trouble doing strenuous activities\", and \"feel tired\" as the most tolerable side effects.</p><p><strong>Conclusions: </strong>This study highlights the value of a multi-method approach in comprehensively assessing treatment preferences and risk tolerance in mCRC. By triangulating multiple preference-elicitation methods, our findings offer a more robust","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":" ","pages":""},"PeriodicalIF":3.1,"publicationDate":"2025-07-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144735179","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":"Cognitive Interviews: Recommendations for Best Practices in Clinical Outcome Assessment (COA) Measure Development and Validation.","authors":"Keith A Meadows, Nur Ferrante, Tomislav Geršić","doi":"10.1007/s40271-025-00752-8","DOIUrl":"https://doi.org/10.1007/s40271-025-00752-8","url":null,"abstract":"<p><p>Cognitive interviewing is a technique that can be used to improve and refine questionnaire items. Cognitive interviewing is now a commonly used method to improve the reliability and validity of clinical outcome assessment instruments by identifying problems respondents have in understanding and answering the draft questionnaire items, and then to revise the items to improve understanding and response accuracy. Although practitioners are in general agreement regarding the basic principles and aims of the cognitive interview, there is considerable variation in practitioners' approaches. The aim of this paper is to put forward a few recommendations regarding best practice in the application of cognitive interviews as part of the developmental process of clinical outcome assessment instruments. The paper is structured in order that each section addresses a discrete and key element of the cognitive interview process that ranges from selecting the appropriate methodology, development of the interview guide, interviewer recruitment and training, and determining sample size through to approaches for analysis and writing the cognitive interview report. Each element of the cognitive interview process is divided into (1) the rational underpinning the methodology; (2) the recommended procedural steps; and (3) an overview of lessons learnt from previous research.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":" ","pages":""},"PeriodicalIF":3.4,"publicationDate":"2025-07-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144700251","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}
Christel McMullan, Melanie J Calvert, Sarah E Hughes, Lester Pyatt, Bernie Kern, Karen L Shaw, Biruk Asfaw, Caroline Besley, Niamh Buckingham, Hayley Ellis, Caitlin Farrow, Maria Mazza, Rachel Miller, David Irvine, Ceri Jones, Emily John, Yasmin Sheikh, Gemma Pugh, Christina Yiallouridou, Olalekan Lee Aiyegbusi
{"title":"Patient and Caregiver Experiences of CAR T Cell Therapy for Blood Cancer in the UK: A Qualitative Study.","authors":"Christel McMullan, Melanie J Calvert, Sarah E Hughes, Lester Pyatt, Bernie Kern, Karen L Shaw, Biruk Asfaw, Caroline Besley, Niamh Buckingham, Hayley Ellis, Caitlin Farrow, Maria Mazza, Rachel Miller, David Irvine, Ceri Jones, Emily John, Yasmin Sheikh, Gemma Pugh, Christina Yiallouridou, Olalekan Lee Aiyegbusi","doi":"10.1007/s40271-025-00757-3","DOIUrl":"https://doi.org/10.1007/s40271-025-00757-3","url":null,"abstract":"<p><strong>Background: </strong>Advanced cell therapies, including chimeric antigen receptor T cell (CAR T cell) therapies, offer novel opportunities for the treatment of advanced blood cancers such as lymphoma and leukaemia. However, as these therapies are relatively new, there is limited information on the experiences of patients and informal caregivers of the treatment which may influence the uptake of these therapies. The aim of this qualitative study was to explore their experiences to facilitate the identification of specific issues that should be addressed to positively impact patient outcomes and experiences of care.</p><p><strong>Methods: </strong>We conducted semi-structured qualitative interviews with 26 CAR T cell recipients from four UK CAR T cell centres who were ≥ 1 month post-treatment and nine caregivers. Interviews explored participants' experiences of CAR T cell therapy and perspectives on key issues. Data from the interviews were inductively coded using thematic analysis.</p><p><strong>Results: </strong>The main themes identified included (1) opinions of information provision, (2) experiences of protective isolation, (3) impacts of illness and treatment, (4) reflections on support needed and received, and (5) role of charities and support groups. Participants highlighted the need for support specifically for caregivers and provided practical suggestions for improving the experiences of future patients.</p><p><strong>Conclusions: </strong>Interventions to address the issues raised need to be co-developed with key stakeholders, including patients, caregivers, healthcare professionals, policymakers and charitable organisations.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":" ","pages":""},"PeriodicalIF":3.4,"publicationDate":"2025-07-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144692364","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}
Ella Brookes, Ufuk Coşkun, Christina O'Donnell, Efstathios Zikos, Renata Martincova, Jingdong Chao, Mohana Giruparajah, Beverly Romero
{"title":"Exit Interviews to Understand Meaningful Change from the Patient Perspective in a Clinical Study of Dupilumab for the Treatment of Chronic Inducible Cold Urticaria.","authors":"Ella Brookes, Ufuk Coşkun, Christina O'Donnell, Efstathios Zikos, Renata Martincova, Jingdong Chao, Mohana Giruparajah, Beverly Romero","doi":"10.1007/s40271-025-00754-6","DOIUrl":"https://doi.org/10.1007/s40271-025-00754-6","url":null,"abstract":"<p><strong>Background: </strong>This study uses clinical trial exit interviews to understand patients' experience of meaningful change with respect to patient-reported outcomes and in order to confirm the content validity of some items from selected trial patient-reported outcomes (Urticaria Control Test [UCT], Cold Urticaria Activity Score [ColdUAS], Patient Global Impression of Severity [PGIS], Patient Global Impression of Change [PGIC]). Clinical trial exit interviews are an effective way to generate qualitative meaningful change insights. However, there is lack of data to provide an understanding of meaningful improvement from the chronic inducible cold urticaria patient perspective.</p><p><strong>Methods: </strong>We conducted a cross-sectional, double-blind, stand-alone exit interview study intended to recruit participants aged 12-80 years with cold urticaria across centers in Argentina, Canada, USA, and Germany participating in LIBERTY-CINDU CUrIADS (EudraCT: 2020-003756-33), which analyzed the efficacy of dupilumab versus placebo. Exit interviews were conducted within 2 weeks of the end of treatment.</p><p><strong>Results: </strong>Participants (N = 15) reported symptoms including rash/redness, itch, hives, swelling, burning, and pain. The study established patient-defined thresholds for meaningful improvement: approximately two response options for UCT items, slightly fewer than two response options for ColdUAS items, and 1-2 category changes on PGIS/PGIC. Most participants reporting symptom improvement found it meaningful, with satisfaction being related to the degree of symptom relief. Notably, patients distinguished between a general symptom change and clinically meaningful change.</p><p><strong>Conclusions: </strong>Exit interviews revealed key insights into patients' experiences with cold urticaria. Despite some limitations, including recruitment challenges and an all-female adult participant pool, the study provided valuable evidence for understanding meaningful improvement in cold urticaria treatment from the patient perspective.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":" ","pages":""},"PeriodicalIF":3.4,"publicationDate":"2025-07-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144692363","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}
Carlos DeCastro, Phillip Sheinberg, Bing Han, Susan Vallow, Georgina Bermann, Marion Dhalke, Rakesh Kumar, Gavin Dickie, Nina Galipeau, Roger Lamoureux, Kaelyn Rupinski, Caitlyn Lowe, Amber Nieves, Flore Sicre de Fontbrune, Regis Peffault de Latour
{"title":"Patient-Reported Meaningful Change in Symptoms and Impacts of Paroxysmal Nocturnal Hemoglobinuria (PNH) in Three Phase III Clinical Trials of Iptacopan.","authors":"Carlos DeCastro, Phillip Sheinberg, Bing Han, Susan Vallow, Georgina Bermann, Marion Dhalke, Rakesh Kumar, Gavin Dickie, Nina Galipeau, Roger Lamoureux, Kaelyn Rupinski, Caitlyn Lowe, Amber Nieves, Flore Sicre de Fontbrune, Regis Peffault de Latour","doi":"10.1007/s40271-025-00755-5","DOIUrl":"https://doi.org/10.1007/s40271-025-00755-5","url":null,"abstract":"<p><strong>Background: </strong>Paroxysmal nocturnal hemoglobinuria (PNH) is a rare hematological disease, with symptoms including fatigue, difficulty breathing, and hemoglobinuria, which negatively affect health-related quality of life.</p><p><strong>Objective: </strong>In-trial interviews with patients with PNH, enrolled across three clinical trials, were conducted to understand patient experiences and satisfaction after receiving iptacopan, a novel treatment for PNH.</p><p><strong>Methods: </strong>Adult participants with PNH were recruited and consented into the qualitative interviews across three phase II/III iptacopan trials (NCT04558918, NCT04820530, and NCT04747613). Interview documents were developed and approved by the relevant ethics authorities in target countries. Trained qualitative interviewers used a semi-structured interview guide to elicit information on PNH-related symptoms and impacts participants experienced prior to the trial, how these changed after receiving iptacopan, and their treatment experience and satisfaction with iptacopan.</p><p><strong>Results: </strong>Interviews were conducted with 61 participants in eight countries. Participants reported a broad range of symptoms and impacts associated with PNH, including fatigue, tiredness, frustration, difficulty doing usual activities, and limitation to social activities. Interview participants reported improvements in the signs, symptoms, and impacts of PNH after receiving iptacopan, and the majority of participants considered those improvements to be meaningful. Participants reported being either \"very satisfied\" or \"satisfied\" with their treatment experience of iptacopan.</p><p><strong>Conclusion: </strong>Findings from these interviews provide valuable patient-reported data on the positive treatment experience and meaningful improvements in PNH symptoms and health-related quality-of-life impacts patients reported after receiving iptacopan. These qualitative reports from patients support and contextualize the positive efficacy results demonstrated in the three iptacopan clinical trials. NCT04558918 (16 Sep 2020), NCT04820530 (25 Mar 2021), NCT04747613 (09 Feb 2021).</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":" ","pages":""},"PeriodicalIF":3.4,"publicationDate":"2025-07-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144692365","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}
Shelby L Kennedy, Susan M Jack, Natasha Johnson, Jennifer Couturier, Charlene Rae, Anne F Klassen
{"title":"Prioritizing Participant and Research Team Emotional Safety During Data Generation and Analysis in Qualitative Patient-Reported Outcome Measure Research: Development of a Framework Informed by the GENDER-Q Youth Study.","authors":"Shelby L Kennedy, Susan M Jack, Natasha Johnson, Jennifer Couturier, Charlene Rae, Anne F Klassen","doi":"10.1007/s40271-025-00756-4","DOIUrl":"https://doi.org/10.1007/s40271-025-00756-4","url":null,"abstract":"<p><p>Conducting applied qualitative health research studies often involves discussion of sensitive topics that may impact the emotional safety of participants and researchers. While generic guidance exists to support researchers in prioritizing participant and researcher emotional safety, specific considerations for conducting virtual qualitative interviews to develop patient-reported outcome measures (PROMs) remain limited. This article provides a framework to support PROM developers in prioritizing participant and researcher emotional safety when conducting virtual qualitative interviews. This framework is informed by the strategies developed and applied in the GENDER-Q Youth study, an interpretive descriptive study to develop a PROM for youth receiving gender-affirming care (GENDER-Q Youth). The GENDER-Q Youth study involved virtual concept elicitation interviews with transgender and gender diverse youth (aged 12 years and older) to understand important care-related experiences and outcomes. The interview data were then used to develop draft scales. Virtual cognitive debriefing interviews were conducted with concept elicitation participants to obtain feedback on the draft scales. Strategies to promote participant and researcher emotional safety were developed and implemented throughout data generation (i.e., concept elicitation and cognitive debriefing interviews) and data analysis. On the basis of knowledge gained from creating and applying safety strategies in the GENDER-Q Youth study, a framework was developed to support researchers in prioritizing participant and researcher emotional safety when conducting their respective virtual PROM development studies. This framework offers considerations to support researchers before data generation (e.g., scheduling interviews when support will be available, should an emotional safety concern arise), during data generation (e.g., conducting check-ins with participants), after data generation (e.g., providing opportunities for the interviewing researcher to debrief), and during data analysis (e.g., conducting check-ins with research team members). This framework can help PROM developers identify threats to emotional safety that may occur before, during, and after virtual data generation and during data analysis and facilitate the development of strategies and plans to mitigate these risks.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":" ","pages":""},"PeriodicalIF":3.4,"publicationDate":"2025-07-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144692366","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}
Claudia Haberland, Melissa Barclay, Asha Lehane, Sophie Whyman, Adam Gater, Heidi Wikstrom, Christian Seitz, Nils Schoof, Andrew Trigg, Helena Bradley
{"title":"Exit Interviews Examining Changes to Mood and Work/Productivity Impacts Related to Vasomotor Symptoms: Perspectives of Postmenopausal Women Receiving Elinzanetant in Phase III Clinical Trials.","authors":"Claudia Haberland, Melissa Barclay, Asha Lehane, Sophie Whyman, Adam Gater, Heidi Wikstrom, Christian Seitz, Nils Schoof, Andrew Trigg, Helena Bradley","doi":"10.1007/s40271-025-00748-4","DOIUrl":"https://doi.org/10.1007/s40271-025-00748-4","url":null,"abstract":"<p><strong>Background: </strong>Vasomotor symptoms (VMS; hot flashes) significantly impact women's health-related quality of life during the menopausal transition. Two phase III trials (OASIS 1 and 2) were conducted to investigate the efficacy and safety of elinzanetant for the treatment of moderate-to-severe VMS associated with menopause. This exit interview study explored the impact of VMS on women's mood and work/productivity before and since treatment.</p><p><strong>Methods: </strong>A total of 40 postmenopausal women from the USA who participated in OASIS 1 and 2 (receiving elinzanetant for 26 weeks or placebo for 12 weeks followed by elinzanetant for 14 weeks) took part in a 60-min exit interview. Interviews were conducted via telephone by trained qualitative interviewers using a semi-structured interview guide; concept-elicitation techniques, followed by focused questioning, were used to explore concepts of interest. Interview transcripts were analyzed using thematic analysis methods in Atlas.ti. Saturation analysis was conducted to determine the appropriateness of the sample size.</p><p><strong>Results: </strong>Twelve mood concepts and seven work/productivity concepts were reported to be associated with VMS before taking the study medication. Most commonly reported mood concepts included reduced happiness (60.0%), embarrassment (50.0%), and mood swings (45.0%). Most commonly reported work/productivity concepts included reduced concentration (77.5%) and reduced productivity (67.5%). Most participants reported improvements since taking the study medication (mood: ≥ 82.4%; work/productivity: ≥ 80.0%), which contributed to other positive changes (e.g., in social wellbeing). Improvements were considered meaningful (≥ 72.2%) and highly satisfying (≥ 71.4%).</p><p><strong>Conclusion: </strong>This study provides novel insights into women's experiences of VMS-associated impacts on mood and work/productivity, highlighting the emotional and economic burdens of VMS. Data support and contextualize the treatment benefits of elinzanetant on mood and work/productivity that are meaningful to women.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":" ","pages":""},"PeriodicalIF":3.4,"publicationDate":"2025-07-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144621055","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}
Norah L Crossnohere, Jonah Golder, Esther W de Bekker-Grob, Juan Marcos Gonzalez Sepulveda, Kert Gunasekaran, Alissa Hanna, Bennett Levitan, Barry Liden, Deborah Marshall, Christine Poulos, Shelby D Reed, Ellen M Janssen
{"title":"Developing Tools for the Efficient Design of Health Preference Studies: Taxonomy of Attributes and Prototype of an Attribute Library.","authors":"Norah L Crossnohere, Jonah Golder, Esther W de Bekker-Grob, Juan Marcos Gonzalez Sepulveda, Kert Gunasekaran, Alissa Hanna, Bennett Levitan, Barry Liden, Deborah Marshall, Christine Poulos, Shelby D Reed, Ellen M Janssen","doi":"10.1007/s40271-025-00751-9","DOIUrl":"https://doi.org/10.1007/s40271-025-00751-9","url":null,"abstract":"<p><p>Preference information describes the relative desirability or acceptability of specified alternatives that differ across health states, interventions, or services. Studies that generate preference information are being designed to support patient-centered decision making across all stages of the medical product lifecycle, as well as in healthcare more generally. Ensuring high-quality preference research with the potential for impact requires transparent and thoughtful study design, a core aspect of which often includes the development of attributes. Good practices for attribute development in preference studies have started to emerge and demonstrate that developing attributes requires substantial time and effort. Resources to more easily and systematically identify potentially relevant attributes may support the accessibility, interoperability, and reusability of attributes, in turn improving the efficiency of preference study design and comparability of findings across studies. In this paper, we first describe the need for and potential benefit of tools that promote the purposeful re-use of attributes for preference studies. We next present a taxonomy for categorizing and describing attributes that could be applied to facilitate their identification. Finally, we apply this taxonomy to a prototype \"attribute library,\" developed as a part of a Medical Device Innovation Consortium work group, to demonstrate the potential value of these resources to support the preference research community.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":" ","pages":""},"PeriodicalIF":3.4,"publicationDate":"2025-07-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144561859","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}
Thi Quynh Anh Ho, Lidia Engel, Long Khanh-Dao Le, Glenn Melvin, Jemimah Ride, Ha N D Le, Cathrine Mihalopoulos
{"title":"Discrete Choice Experiment Versus Best-Worst Scaling: An Empirical Comparison in Eliciting Young People's Preferences for Web-Based Mental Health Interventions.","authors":"Thi Quynh Anh Ho, Lidia Engel, Long Khanh-Dao Le, Glenn Melvin, Jemimah Ride, Ha N D Le, Cathrine Mihalopoulos","doi":"10.1007/s40271-025-00739-5","DOIUrl":"10.1007/s40271-025-00739-5","url":null,"abstract":"<p><strong>Background: </strong>Discrete choice experiments (DCEs) and best-worst scaling (BWS) profile cases (BWS case 2, or BWS-2) have been increasingly used in eliciting preferences towards health care interventions. However, it remains unclear which method is more suitable for preference elicitation, particularly in the mental health context. This study aims to compare: (1) the preference results elicited from a DCE and BWS-2; and (2) the acceptability of the two methods in the context of web-based mental health interventions (W-MHIs) for managing anxiety and depression in young people.</p><p><strong>Methods: </strong>Participants were aged 18-25 years, lived in Australia, and self-reported experiencing anxiety and/or depression in the past 12 months. They also had either an intention to use W-MHIs or previous experience with W-MHIs for managing anxiety and/or depression. Recruitment was conducted online via social media and Deakin University notice boards. Eligible participants completed an online survey containing eight DCE and eight BWS-2 choice tasks. Both types of choice tasks comprised six attributes. A multinominal logit model was used to estimate the preference weights and relative importance of attributes. Acceptability was assessed on the basis of dropout rate, completion time, task difficulty, understanding, and participants' preferred type of choice task.</p><p><strong>Results: </strong>A total of 198 participants (mean age: 21.42 ± 2.3 years, 64.65% female) completed the survey. Both DCE and BWS-2 predicted that cost was the most important attribute in young people's decision to engage with W-MHIs. However, the two methods differed in the relative importance of attributes and the preference ranking of levels within attributes. The DCE was perceived as easier to understand and answer, with nearly 64% of the participants preferring it over the BWS-2.</p><p><strong>Conclusions: </strong>While both methods found cost was the most important attribute associated with engagement with W-MHIs, differences in the ranking of other attributes suggest that DCE and BWS-2 are not necessarily interchangeable. Increased acceptability by study participants of the DCE format suggests that this technique may have more merit than BWS-2-at least in the current study's context. Further research is required to identify the optimal method for determining the relative importance of attributes.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":" ","pages":"357-372"},"PeriodicalIF":3.4,"publicationDate":"2025-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12170701/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144048981","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}