Patient-Patient Centered Outcomes Research最新文献

{"title":"Acknowledgement to Referees.","authors":"","doi":"10.1007/s40271-023-00664-5","DOIUrl":"https://doi.org/10.1007/s40271-023-00664-5","url":null,"abstract":"","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":" ","pages":""},"PeriodicalIF":3.6,"publicationDate":"2023-12-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138832889","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":"Maximum Acceptable Risk Estimation Based on a Discrete Choice Experiment and a Probabilistic Threshold Technique.","authors":"Jorien Veldwijk,&nbsp;Rachael Lynn DiSantostefano,&nbsp;Ellen Janssen,&nbsp;Gwenda Simons,&nbsp;Matthias Englbrecht,&nbsp;Karin Schölin Bywall,&nbsp;Christine Radawski,&nbsp;Karim Raza,&nbsp;Brett Hauber,&nbsp;Marie Falahee","doi":"10.1007/s40271-023-00643-w","DOIUrl":"10.1007/s40271-023-00643-w","url":null,"abstract":"<p><strong>Objective: </strong>We aimed to empirically compare maximum acceptable risk results estimated using both a discrete choice experiment (DCE) and a probabilistic threshold technique (PTT).</p><p><strong>Methods: </strong>Members of the UK general public (n = 982) completed an online survey including a DCE and a PTT (in random order) measuring their preferences for preventative treatment for rheumatoid arthritis. For the DCE, a Bayesian D-efficient design consisting of four blocks of 15 choice tasks was constructed including six attributes with varying levels. The PTT used identical risk and benefit attributes. For the DCE, a panel mixed-logit model was conducted, both mean and individual estimates were used to calculate maximum acceptable risk. For the PTT, interval regression was used to calculate maximum acceptable risk. Perceived complexity of the choice tasks and preference heterogeneity were investigated for both methods.</p><p><strong>Results: </strong>Maximum acceptable risk confidence intervals of both methods overlapped for serious infection and serious side effects but not for mild side effects (maximum acceptable risk was 32.7 percent-points lower in the PTT). Although, both DCE and PTT tasks overall were considered easy or very easy to understand and answer, significantly more respondents rated the DCE choice tasks as easier to understand compared with those who rated the PTT as easier (7-percentage point difference; p < 0.05).</p><p><strong>Conclusions: </strong>Maximum acceptable risk estimate confidence intervals based on a DCE and a PTT overlapped for two out of the three included risk attributes. More respondents rated the DCE as easier to understand. This may suggest that the DCE is better suited in studies estimating maximum acceptable risk for multiple risk attributes of differing severity, while the PTT may be better suited when measuring heterogeneity in maximum acceptable risk estimates or when investigating one or more serious adverse events.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":" ","pages":"641-653"},"PeriodicalIF":3.6,"publicationDate":"2023-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/82/c9/40271_2023_Article_643.PMC10570171.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10113021","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":"A Qualitative Exploration of Patient and Staff Experiences of the Receipt and Delivery of Specialist Weight Management Services in the UK.","authors":"Ross Watkins,&nbsp;Dawn Swancutt,&nbsp;Mia Alexander,&nbsp;Shokraneh Moghadam,&nbsp;Steve Perry,&nbsp;Sarah Dean,&nbsp;Rod Sheaff,&nbsp;Jonathan Pinkney,&nbsp;Mark Tarrant,&nbsp;Jenny Lloyd","doi":"10.1007/s40271-023-00644-9","DOIUrl":"10.1007/s40271-023-00644-9","url":null,"abstract":"<p><strong>Background: </strong>Addressing the increasing prevalence of obesity is a global public health priority. Severe obesity (body mass index > 40) reduces life expectancy, due to its association with people developing complications (e.g. diabetes, cancer, cardiovascular disease), and greatly impairs quality of life. The National Health Service (NHS) in the UK provides specialist weight management services (SWMS) for people with severe obesity, but key uncertainties remain around patient access to and engagement with weight management services, as well as pathways beyond the service.</p><p><strong>Methods: </strong>In this multiple methods study, using online forum data and semi-structured interviews, stakeholders' experiences of delivering and receiving SWMS were explored. Using the web search engine Google with keywords and web address (URL) identifiers, relevant public online platforms were sourced with snowball sampling and search strings used to identify threads related to people's experiences of accessing SWMS (n = 57). Interviews were conducted with 24 participants (nine patients, 15 staff), and data from all sources were analysed thematically using the framework approach.</p><p><strong>Results: </strong>Six themes related to access to and engagement with SWMS emerged during data analysis: (1) making the first move, (2) uncertainty and confusion, (3) resource issues, (4) respect and understanding, (5) mode of delivery, and (6) desire for ongoing support.</p><p><strong>Conclusion: </strong>There is a mixed and varied picture of SWMS provision across the UK. The service offered is based on local clinical decision making and available resources, resulting in a range of patient experiences and perspectives. Whilst service capacity issues and patient anxiety were seen as barriers to accessing care, peer support and positive clinical and group interactions (connectedness between individuals) were considered to increase engagement.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":" ","pages":"625-640"},"PeriodicalIF":3.6,"publicationDate":"2023-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/ed/5a/40271_2023_Article_644.PMC10570191.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10353745","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":"Gauging Incentive Values and Expectations (G.I.V.E.) among Blood Donors for Nonmonetary Incentives: Developing a Preference Elicitation Instrument through Qualitative Approaches in Shandong, China.","authors":"Yu Wang,&nbsp;Peicong Zhai,&nbsp;Yue Zhang,&nbsp;Shan Jiang,&nbsp;Gang Chen,&nbsp;Shunping Li","doi":"10.1007/s40271-023-00639-6","DOIUrl":"10.1007/s40271-023-00639-6","url":null,"abstract":"<p><strong>Introduction: </strong>Blood donation rates remain suboptimal in China necessitating the reform of the current nonmonetary incentive system to motivate donors. This study aims to identify relevant attributes and levels for nonmonetary incentives in repeated blood donation and provide insights for the development of preference elicitation instruments.</p><p><strong>Methods: </strong>A qualitative research process was employed, including a literature review, in-depth interviews, attribute ranking, focus group discussions, and cognitive interviews, to identify potential nonmonetary incentives for blood donation. The identified attributes were then incorporated into a discrete choice experiment (DCE) study design. The comprehensibility and acceptability of the DCE questionnaire were assessed through cognitive interviews and a pilot study.</p><p><strong>Results: </strong>Five nonmonetary incentive attributes were identified, including health examination, designated blood recipient, honor for donation, travel time, and gifts. The designated recipient of blood donation emerged as the most important motivator for future donations among the participants. The cognitive interviews and pilot study provided valuable feedback for refining the DCE questionnaire and ensuring its reliability.</p><p><strong>Conclusion: </strong>This study contributes to the understanding of nonmonetary incentives for blood donation and highlights the importance of designated blood recipients, health examination, honor for donation, travel time, and gifts as potential motivators. Moreover, it emphasizes the value of employing cognitive interviews and pilot studies in the development and refinement of DCE questionnaires, ultimately enhancing the reliability and validity of preference elicitation instruments.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":" ","pages":"593-606"},"PeriodicalIF":3.6,"publicationDate":"2023-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9952880","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":"Face Validity of Four Preference-Weighted Quality-of-Life Measures in Residential Aged Care: A Think-Aloud Study.","authors":"Lidia Engel,&nbsp;Leona Kosowicz,&nbsp;Ekaterina Bogatyreva,&nbsp;Frances Batchelor,&nbsp;Nancy Devlin,&nbsp;Briony Dow,&nbsp;Andrew S Gilbert,&nbsp;Brendan Mulhern,&nbsp;Tessa Peasgood,&nbsp;Rosalie Viney","doi":"10.1007/s40271-023-00647-6","DOIUrl":"10.1007/s40271-023-00647-6","url":null,"abstract":"<p><strong>Objective: </strong>There is an increased use of preference-weighted quality-of-life measures in residential aged care to guide resource allocation decisions or for quality-of-care assessments. However, little is known about their face validity (i.e., how understandable, appropriate and relevant the measures are 'on their face' when respondents complete them). The aim of this study was to assess the face validity of four preference-weighted measures (i.e., EQ-5D-5L, EQ-HWB, ASCOT, QOL-ACC) in older people living in residential aged care.</p><p><strong>Methods: </strong>Qualitative cognitive think-aloud interviews were conducted using both concurrent and retrospective think-aloud techniques. To reduce burden, each resident completed two measures, with the four measures randomised across participants. Audio recordings were transcribed and framework analysis was used for data analysis, based on an existing framework derived from the Tourangeau four-stage response model.</p><p><strong>Results: </strong>In total, 24 interviews were conducted with residents living across three residential aged care facilities in Melbourne, Australia. Response issues were identified across all four measures, often related to comprehension and difficulty selecting a response level due to double-barrelled and ambiguous items that have different meanings in the residential aged care context. We also identified issues related to understanding instructions, non-adherence to the recall period, and noted positive responding that requires attention when interpreting the data.</p><p><strong>Conclusions: </strong>Our findings provide further evidence on the appropriateness of existing measures, indicating numerous response issues that require further research to guide the selection process for research and practice.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":" ","pages":"655-666"},"PeriodicalIF":3.6,"publicationDate":"2023-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/fd/29/40271_2023_Article_647.PMC10570159.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41138890","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":"Operationalizing the Chronic Care Model with Goal-Oriented Care.","authors":"Agnes Grudniewicz,&nbsp;Carolyn Steele Gray,&nbsp;Pauline Boeckxstaens,&nbsp;Jan De Maeseneer,&nbsp;James Mold","doi":"10.1007/s40271-023-00645-8","DOIUrl":"10.1007/s40271-023-00645-8","url":null,"abstract":"<p><p>The Chronic Care Model has guided quality improvement in health care for almost 20 years, using a patient-centered, disease management approach to systems and care teams. To further advance efforts in person-centered care, we propose strengthening the Chronic Care Model with the goal-oriented care approach. Goal-oriented care is person-centered in that it places the focus on what matters most to each person over the course of their life. The person's goals inform care decisions, which are arrived at collaboratively between clinicians and the person. In this paper, we build on each of the elements of the Chronic Care Model with person-centered, goal-oriented care and provide clinical examples on how to operationalize this approach. We discuss how this adapted approach can support our health care systems, in particular in the context of growing multi-morbidity.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":" ","pages":"569-578"},"PeriodicalIF":3.6,"publicationDate":"2023-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/13/46/40271_2023_Article_645.PMC10570240.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10485405","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":"Patient Preferences in Diagnostic Imaging: A Scoping Review.","authors":"Trey A Baird, Davene R Wright, Maria T Britto, Ellen A Lipstein, Andrew T Trout, Shireen E Hayatghaibi","doi":"10.1007/s40271-023-00646-7","DOIUrl":"10.1007/s40271-023-00646-7","url":null,"abstract":"<p><strong>Background: </strong>As new diagnostic imaging technologies are adopted, decisions surrounding diagnostic imaging become increasingly complex. As such, understanding patient preferences in imaging decision making is imperative.</p><p><strong>Objectives: </strong>We aimed to review quantitative patient preference studies in imaging-related decision making, including characteristics of the literature and the quality of the evidence.</p><p><strong>Methods: </strong>The Pubmed, Embase, EconLit, and CINAHL databases were searched to identify studies involving diagnostic imaging and quantitative patient preference measures from January 2000 to June 2022. Study characteristics that were extracted included the preference elicitation method, disease focus, and sample size. We employed the PREFS (Purpose, Respondents, Explanation, Findings, Significance) checklist as our quality assessment tool.</p><p><strong>Results: </strong>A total of 54 articles were included. The following methods were used to elicit preferences: conjoint analysis/discrete choice experiment methods (n = 27), contingent valuation (n = 16), time trade-off (n = 4), best-worst scaling (n = 3), multicriteria decision analysis (n = 3), and a standard gamble approach (n = 1). Half of the studies were published after 2016 (52%, 28/54). The most common scenario (n = 39) for eliciting patient preferences was cancer screening. Computed tomography, the most frequently studied imaging modality, was included in 20 studies, and sample sizes ranged from 30 to 3469 participants (mean 552). The mean PREFS score was 3.5 (standard deviation 0.8) for the included studies.</p><p><strong>Conclusions: </strong>This review highlights that a variety of quantitative preference methods are being used, as diagnostic imaging technologies continue to evolve. While the number of preference studies in diagnostic imaging has increased with time, most examine preventative care/screening, leaving a gap in knowledge regarding imaging for disease characterization and management.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":" ","pages":"579-591"},"PeriodicalIF":3.4,"publicationDate":"2023-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10154822","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":"Discrete-Choice Experiment to Understand the Preferences of Patients with Hormone-Sensitive Prostate Cancer in the USA, Canada, and the UK.","authors":"Juan Marcos Gonzalez,&nbsp;Arijit Ganguli,&nbsp;Alicia K Morgans,&nbsp;Bertrand F Tombal,&nbsp;Sebastien J Hotte,&nbsp;Hiroyoshi Suzuki,&nbsp;Hemant Bhadauria,&nbsp;Mok Oh,&nbsp;Charles D Scales,&nbsp;Matthew J Wallace,&nbsp;Jui-Chen Yang,&nbsp;Daniel J George","doi":"10.1007/s40271-023-00638-7","DOIUrl":"10.1007/s40271-023-00638-7","url":null,"abstract":"<p><strong>Background: </strong>Treatment options for patients with metastatic hormone-sensitive prostate cancer (mHSPC) have broadened, and treatment decisions can have a long-lasting impact on patients' quality of life. Data on patient preferences can improve therapeutic decision-making by helping physicians suggest treatments that align with patients' values and needs.</p><p><strong>Objective: </strong>This study aims to quantify patient preferences for attributes of chemohormonal therapies among patients with mHSPC in the USA, Canada, and the UK.</p><p><strong>Methods: </strong>A discrete-choice experiment survey instrument was developed and administered to patients with high- and very-high-risk localized prostate cancer and mHSPC. Patients chose between baseline androgen-deprivation therapy (ADT) alone and experimentally designed, hypothetical treatment alternatives representing chemohormonal therapies. Choices were analyzed using logit models to derive the relative importance of attributes for each country and to evaluate differences and similarities among patients across countries.</p><p><strong>Results: </strong>A total of 550 respondents completed the survey (USA, 200; Canada, 200; UK, 150); the mean age of respondents was 64.3 years. Treatment choices revealed that patients were most concerned with treatment efficacy. However, treatment-related convenience factors, such as route of drug administration and frequency of monitoring visits, were as important as some treatment-related side effects, such as skin rash, nausea, and fatigue. Patient preferences across countries were similar, although patients in Canada appeared to be more affected by concomitant steroid use.</p><p><strong>Conclusion: </strong>Patients with mHSPC believe the use of ADT alone is insufficient when more effective treatments are available. Efficacy is the most significant driver of patient choices. Treatment-related convenience factors can be as important as safety concerns for patients.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":" ","pages":"607-623"},"PeriodicalIF":3.6,"publicationDate":"2023-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/6a/55/40271_2023_Article_638.PMC10570152.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9965771","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":"Preferences for Adjuvant Immunotherapy in Adults with Resected Stage III Melanoma-A Discrete Choice Experiment.","authors":"Ann Livingstone, Kirsten Howard, Alexander M Menzies, Georgina V Long, Martin R Stockler, Rachael L Morton","doi":"10.1007/s40271-023-00635-w","DOIUrl":"10.1007/s40271-023-00635-w","url":null,"abstract":"<p><strong>Objectives: </strong>This study aimed to quantify adult preferences for adjuvant immunotherapy for resected melanoma and the influence of varying levels of key attributes and baseline characteristics.</p><p><strong>Methods: </strong>A D-efficient design generated 12 choice tasks for two alternative treatments, adjuvant immunotherapy or no adjuvant immunotherapy. Recruitment to the online discrete choice experiment (DCE) occurred via survey dissemination by eight Australian melanoma consumer and professional groups, targeting adults with resected stage III melanoma, considering or having received adjuvant immunotherapy. The DCE included six attributes with two to three levels each, including 3-year risk of recurrence, mild, permanent and fatal adverse events (AEs), drug regimen and annual out-of-pocket costs. A mixed multinomial logit model was used to estimate preferences and calculate marginal rates of substitution and marginal willingness to pay (mWTP).</p><p><strong>Results: </strong>The DCE was completed by 116 respondents, who chose adjuvant immunotherapy over no adjuvant immunotherapy in 70% of choice tasks. Respondents preferred adjuvant immunotherapy when associated with reduced: probabilities of recurrence, permanent and fatal AEs, and out-of-pocket costs. mWTP for an absolute reduction of 1% in 3-year risk of recurrence was less for respondents with lower rather than higher incomes, AU$794 (US$527) and AU$2190 (US$1454) per year. Respondents accepted an additional 4% chance of a permanent AE to reduce their absolute risk of 3-year recurrence by 1%. Respondents were willing to accept an extra 2% chance of 3-year recurrence to lower their chance of a fatal AE by 1%.</p><p><strong>Conclusions: </strong>Almost three-quarters of respondents chose adjuvant immunotherapy over no adjuvant immunotherapy, preferring treatment that improved efficacy and safety. Findings may inform decisions about access to adjuvant immunotherapy following surgery for melanoma.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":"16 5","pages":"497-513"},"PeriodicalIF":3.6,"publicationDate":"2023-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/51/ca/40271_2023_Article_635.PMC10409831.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9970931","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":"Including Young Children in the Development and Testing of Patient Reported Outcome (PRO) Instruments: A Scoping Review of Children's Involvement and Qualitative Methods.","authors":"Victoria Gale, Jill Carlton","doi":"10.1007/s40271-023-00637-8","DOIUrl":"10.1007/s40271-023-00637-8","url":null,"abstract":"<p><strong>Background: </strong>Qualitative research during the development/testing of Patient Reported Outcome Measures (PROMs) is recommended to support content validity. However, it is unclear if and how young children (≤ 7 years) can be involved in this research because of their unique cognitive needs.</p><p><strong>Objectives: </strong>Here we investigate the involvement of children (≤ 7 years) in qualitative research for PROM development/testing. This review aimed to identify (1) which stages of qualitative PROM development children ≤ 7 years had been involved in, (2) which subjective health concepts had been explored within qualitative PROM development with this age group, and (3) which qualitative methods had been reported and how these compared with existing methodological recommendations.</p><p><strong>Methods: </strong>This scoping review systematically searched three electronic databases (searches re-run prior to final analysis on 29 June 2022) with no date restrictions. Included studies had samples of at least 75% aged ≤ 7 years or reported distinct qualitative methods for children ≤ 7 years in primary qualitative research to support concept elicitation or PROM development/testing. Articles not in English and PROMs that did not enable children ≤ 7 years to self-report were excluded. Data on study type, subjective health and qualitative methods were extracted and synthesised descriptively. Methods were compared with recommendations from guidance.</p><p><strong>Results: </strong>Of 19 included studies, 15 reported concept elicitation research and 4 reported cognitive interviewing. Most explored quality of life (QoL)/health-related quality of life (HRQoL). Some concept elicitation studies reported that creative/participatory activities had supported children's engagement, but results and reporting detail varied considerably across studies. Cognitive interviewing studies reported less methodological detail and fewer methods adapted for young children compared with concept elicitation studies. They were limited in scope regarding assessments of content validity, mostly focussing on clarity while relevance and comprehensiveness were explored less.</p><p><strong>Discussion: </strong>Creative/participatory activities may be beneficial in concept elicitation research with children ≤ 7 years, but future research needs to explore what contributes to the success of young children's involvement and how researchers can adopt flexible methods. Cognitive interviews with young children are limited in frequency, scope and reported methodological detail, potentially impacting PROM content validity for this age group. Without detailed reporting, it is not possible to determine the feasibility and usefulness of children's (≤ 7 years) involvement in qualitative research to support PROM development and assessment.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":"16 5","pages":"425-456"},"PeriodicalIF":3.4,"publicationDate":"2023-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9954735","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}