Journal of Patient-Reported Outcomes最新文献

{"title":"Providers' perspectives on implementing alert-based patient-reported outcome monitoring for stage IV breast cancer.","authors":"Clara Breidenbach, Anna Maria Hage, Sophie Klara Schellack, Therese Pross, Adam David Dordevic, Christoph Kowalski, Maria Margarete Karsten","doi":"10.1186/s41687-026-01106-0","DOIUrl":"10.1186/s41687-026-01106-0","url":null,"abstract":"<p><strong>Objectives: </strong>Using digital patient monitoring with patient-reported outcomes (PROs) is increasing. However, these new digital care tools have not yet been adequately implemented in routine cancer care. To address this issue, we conducted a process evaluation to accompany the PRO B study, a multicenter randomized and controlled trial across Germany, which examined the impact of alert-based PRO monitoring in stage IV breast cancer patients. This article presents the results of this process evaluation from the perspective of participating health-care providers, focusing on determinants for successful implementation.</p><p><strong>Methods: </strong>Semi-structured interviews with 15 interviewees from 12 certified breast cancer centers across Germany participating in the PRO B study were conducted. Interviews were structured by content analysis using the Consolidated Framework for Implementation Research (CFIR).</p><p><strong>Results: </strong>Key findings include the pivotal role of study nurses in managing the PRO monitoring system and its alerts, engaging patients, and ensuring continuity of care, alongside the providers' generally favorable views of the intervention. However, challenges such as limited digital infrastructure and the need for integration into existing hospital information systems were noted.</p><p><strong>Conclusions: </strong>The study highlights the crucial role of nurses, existing infrastructure, and streamlined processes for integrating PRO monitoring into routine clinical practice. Providers' experiences with the intervention highlighted the need for workflow adjustments and additional training for effective implementation in routine cancer care. Tailored solutions, including integration into existing digital patient record systems and processes, as well as resource allocation, are essential for the successful adoption of PRO monitoring in a health-care system.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-06-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13241327/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148158405","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Arabic translation, cross-cultural adaptation, feasibility, acceptability, and initial psychometric evaluation of the hot flushes diary and the hot flush rating scale and diary interference scale (HFRDIS) in young breast cancer survivors.","authors":"Maram Montaser, Fatma Abdalkarim Ibrahim, Fatma Bektash, Hayam Ateyya, Nouran Omar El Said, Emad Shash","doi":"10.1186/s41687-026-01103-3","DOIUrl":"10.1186/s41687-026-01103-3","url":null,"abstract":"<p><strong>Background: </strong>Hot flushes (HF) are a highly prevalent and distressing vasomotor symptom among young breast cancer survivors receiving endocrine therapy, yet validated Arabic patient-reported instruments are limited for quantifying daily symptoms and their interference with functioning.</p><p><strong>Methods: </strong>The 3-Category Hot Flushes Diary and the Hot Flash Related Daily Interference Scale (HFRDIS) were translated using forward-back translation and culturally adapted into Arabic. A total of 37 premenopausal women aged ≤ 45 years with breast cancer receiving adjuvant endocrine therapy were prospectively enrolled at the National Cancer Institute, Cairo University. Participants completed the Arabic HFRDIS once (reflecting the preceding week). Then they completed the Arabic diary for seven consecutive days, recording daily hot-flash frequency and maximum daily severity. Internal consistency was assessed using Cronbach's α (acceptability ≥0.70). Descriptive statistics summarized symptom frequency/severity and HFRDIS interference scores. Feasibility was assessed using completion rate and participant feedback on clarity and cultural appropriateness.</p><p><strong>Results: </strong>Participants had a mean age of 38.5 ± 4.7 years; most were receiving tamoxifen (94.6%) and goserelin (73.0%). The Arabic diary demonstrated excellent internal consistency (Cronbach's α = 0.933), with stable item-deletion α values (0.924-0.933). Median daily HF frequency was 2 episodes/day (range 0-9), with mean daily frequency ranging from 2.2 to 2.6 episodes/day across the week. Moderate-to-severe symptoms were frequently observed. The Arabic version of the HFRDIS exhibited high reliability, with a Cronbach's alpha of 0.908. and indicated the greatest interference in mood (mean 8.0), sleep (mean 7.5), and concentration (mean 6.9), with notable interference in work, leisure activities, and overall quality of life. The sexuality item had fewer responses than other domains. All participants judged the instruments clear and culturally appropriate, and completion of the diary was 100%.</p><p><strong>Conclusions: </strong>The Arabic 3-Category Hot Flushes Diary and Arabic HFRDIS demonstrated strong internal consistency and feasibility in this initial evaluation and appear suitable for use in Egyptian populations. These tools may support standardized symptom assessment and clinical decision-making in similar settings. Future studies should evaluate test-retest reliability and responsiveness in larger and more diverse Arabic-speaking populations.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-06-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13241355/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148151674","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Translation and validation of the functional assessment of cancer therapy-endometrial cancer (FACT-En) version 4 quality of life instrument into Thai language.","authors":"Rachadapan Chaitosa, Arb-Aroon Lertkhachonsuk, Bualuang Sumdarngrit","doi":"10.1186/s41687-026-01107-z","DOIUrl":"10.1186/s41687-026-01107-z","url":null,"abstract":"<p><strong>Background: </strong>Quality-of-life assessment plays an essential role in evaluating outcomes and supportive care among women with endometrial cancer. This study aimed to translate, culturally adapt, and validate the Thai version of the Functional Assessment of Cancer Therapy-Endometrial Cancer (FACT-En) questionnaire.</p><p><strong>Methods: </strong>The English version of the FACT-En was translated and back-translated according to the FACIT translation methodology. A cross-sectional study was conducted among 173 Thai women with endometrial cancer at Ramathibodi Hospital, Mahidol University. Internal consistency was assessed using Cronbach's alpha, and construct validity was evaluated using Spearman's correlation with the WHOQOL-BREF-THAI.</p><p><strong>Results: </strong>The Thai FACT-En demonstrated excellent internal consistency, with Cronbach's alpha coefficients ranging from 0.85 to 0.91 across subscales and 0.86 for the total score. Subscale scores showed moderate to strong correlations with the WHOQOL-BREF-THAI total score (r = 0.59-0.73, p < 0.01), supporting convergent validity.</p><p><strong>Conclusion: </strong>The Thai version of the FACT-En is a reliable and valid tool for assessing health-related quality of life in Thai women with endometrial cancer. It is suitable for use in both clinical practice and research to support patient-centered care and outcome evaluation.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-06-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13457748/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148151026","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Leveraging large language models in patient-reported outcome measure development: practical opportunities, cautions, and a human-in-the-loop roadmap.","authors":"Constance Mara, Tiffany Rybak","doi":"10.1186/s41687-026-01112-2","DOIUrl":"10.1186/s41687-026-01112-2","url":null,"abstract":"<p><strong>Background: </strong>Patient-reported outcome (PRO) measure development involves multiple language-intensive stages, including conceptual domain definition, candidate item generation, qualitative refinement, and cognitive interviewing prior to psychometric evaluation. Large language models (LLMs) may offer new opportunities to support these qualitative development activities, although their role within established PRO development frameworks remains incompletely defined.</p><p><strong>Aims: </strong>This commentary proposes a practical human-in-the-loop roadmap for integrating LLMs into the qualitative phases of PRO development while preserving established standards for content validity and psychometric rigor.</p><p><strong>Approach: </strong>Drawing on examples from development of the Eating Behavior Measurement (EBM) project and emerging literature from PRO science, survey methodology, and psychological measurement, we outline several bounded use cases for LLMs in PRO measure qualitative development workflows. These include accelerating synthesis of legacy item pools (\"domain cartography\"), generating candidate items within human-defined constructs, supporting iterative item revision in response to cognitive interview findings, conducting semantic coherence checks for construct alignment, and assisting with developmental or contextual adaptation of candidate items. Across these applications, LLMs function as structured drafting and analytic tools rather than arbiters of validity. We additionally discuss practical risks involving confirmation bias, semantic circularity, transparency, reproducibility, and construct drift, along with strategies for mitigation through human oversight and model triangulation.</p><p><strong>Conclusions: </strong>LLMs do not replace qualitative inquiry, expert judgment, or empirical psychometric validation. Rather, they may help support more systematic and scalable qualitative development workflows when used within bounded, human-centered measurement frameworks. The central challenge for PRO science is not whether to adopt these tools, but how to integrate them responsibly without compromising the evidentiary standards on which the field depends.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"10 1","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-06-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13230362/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148144718","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A longitudinal psychometric evaluation of a context-sensitive positive health questionnaire for measuring broad health in Dutch adults.","authors":"Eveline M Dubbeldeman, Mirte Boelens, Esther J Bloemen-van Gurp, John A J Dierx, Marieke D Spreeuwenberg, Jessica C Kiefte-de Jong","doi":"10.1186/s41687-026-01098-x","DOIUrl":"10.1186/s41687-026-01098-x","url":null,"abstract":"<p><strong>Introduction: </strong>The Context-sensitive Positive Health Questionnaire (CPHQ) was developed to measure broad health, grounded in Positive Health and the Capability Approach. Through co-creation with professionals from various domains and citizens, including those with lower socioeconomic position, the instrument was revised into a 28-item version. This study evaluates its psychometric properties.</p><p><strong>Methods: </strong>This longitudinal study used a stratified sample of Dutch adults to evaluate the psychometric properties of the revised 28-item CPHQ, including factorial and concurrent validity, reliability, and responsiveness. Factorial validity was assessed using Exploratory Factor Analysis, Item Response Theory, and Confirmatory Factor Analysis. Concurrent validity was examined via correlations with existing health and wellbeing measures. Subgroup comparisons were conducted to assess known-groups validity, using independent samples t-tests or ANOVA. Mixed models and Kappa were used to assess test-retest reliability across three timepoints, controlling for life events.</p><p><strong>Results: </strong>Factor analyses supported an eight-factor structure (mental relaxation, social acceptance, wellbeing, vitality, social support, financial resources, health literacy, mobility) explaining 59.2% of the variance, with good model fit. Internal consistency was acceptable, with composite reliability ranging from 0.59 (health literacy) to 0.90 (financial resources). Concurrent validity was supported by strong correlations with related constructs, particularly in wellbeing, vitality, and social support. Subgroup analyses confirmed hypothesized differences across gender, age, socioeconomic position, and life events, supporting the known-groups validity of the CPHQ2.0. The CPHQ2.0 showed good test-retest reliability (ICCs mostly > 0.70), with the total score showing highest stability (ICC = 0.88). Kappa values indicated moderate to substantial agreement across timepoints.</p><p><strong>Conclusion: </strong>The CPHQ2.0 is a valid and reliable tool for measuring broad, context-sensitive health, grounded in the Capability Approach and Positive Health concept. Developed with input from diverse stakeholders, it is suitable for use in research, policy, and to target and evaluate health promoting interventions. Future research should assess its sensitivity to detect changes over time following interventions, and explore applicability across settings and populations.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-06-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13454085/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148151718","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Development of the Pediatric Type 2 Diabetes Impact Measure (P-TIM).","authors":"Kristina S Boye, Katie D Stewart, Louis S Matza, Marissa Stefan, Lucinda Hetherington","doi":"10.1186/s41687-026-01078-1","DOIUrl":"10.1186/s41687-026-01078-1","url":null,"abstract":"<p><strong>Background: </strong>Prevalence of type 2 diabetes (T2D) in children is increasing, and new non-insulin medications are being introduced and evaluated for use in this population. Existing patient-reported outcome (PRO) measures may contain items that are not relevant or sensitive to differences in patients receiving these newer treatments. This qualitative study was designed to explore the impact of T2D in children and to support the development of a questionnaire to assess the impact of pediatric T2D and its treatment.</p><p><strong>Methodology: </strong>Qualitative concept elicitation interviews were conducted with children with T2D and their caregivers to identify the impact of T2D and its treatment. Results were used to inform the development of a child-reported questionnaire assessing the impact of pediatric T2D. Qualitative interviews were conducted with children with T2D to evaluate the draft questionnaire.</p><p><strong>Results: </strong>The concept elicitation interviews were conducted with 13 children with T2D (mean age = 14.2 years; range = 10-17 years; 61.5% male) and their caregivers (mean age = 44.5 years; 76.9% female). Respondents reported broad areas of impact, including eating, emotional functioning, school, family relationships, activities, and social life. Patients also reported opinions on their treatment, including ease of use, blood glucose control, and weight control. A new PRO measure, the Pediatric Type 2 Diabetes Impact Measure (P-TIM), was developed based on these findings. The questionnaire was refined based on qualitative interviews with 10 children with T2D (mean age = 15.0 years; range = 10-17 years; 50% female). Results suggest that the final instrument is clear, comprehensive, and relevant to patients.</p><p><strong>Conclusions: </strong>Results support the content validity of the P-TIM, which was designed to assess the impact of T2D and its treatment, including concepts that are relevant to newer medications (e.g., weight control). The P-TIM may be useful for evaluating the impact of treatment on children and adolescents with T2D.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-05-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13442790/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148139196","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Mapping health-related quality of life measurement tools in Africa: a scoping review.","authors":"Begashaw Melaku Gebresillassie, Lucky Gift Ngwira, Jermaine Dambi, Adeladlew Kassie Netere, Eyayaw Ashete Belachew, Abdelghafour Marfak, Jaafar Chemli, Anthony Waka Udezi, Girma Tekle Gebremariam, Ian Neethling, Samar Farid, Popqol Africa Advisory","doi":"10.1186/s41687-026-01100-6","DOIUrl":"10.1186/s41687-026-01100-6","url":null,"abstract":"<p><strong>Background: </strong>Health-related quality of life (HRQoL) is an important measure in healthcare that captures the multidimensional effects of health on individuals' lives. While HRQoL measures are widely used globally, there is limited consolidated evidence of their application in Africa. This review aimed to explore and map the available evidence on the utilization of HRQoL measures in Africa, with a focus on understanding their application across diverse populations, health conditions, and geographical regions while identifying gaps, methodological inconsistencies, and opportunities for future research.</p><p><strong>Methods: </strong>The scoping review was conducted following the Arksey and O'Malley framework. Electronic databases, including Medline, Embase, Emcare, CINAHL, and Cochrane Library, and other sources, were searched from the inception up until August 2025. Results were synthesized narratively with descriptive statistics, presented using tables and graphs.</p><p><strong>Results: </strong>Out of 20,438 records identified, 731 studies met the inclusion criteria. The geographical distribution revealed significant disparities, with over half of the studies originating from Nigeria (21.8%), Ethiopia (14.8%), and South Africa (14.5%). Most studies (74.2%) employed descriptive designs and were conducted in hospital settings (70.3%). HRQoL instruments were used across a wide range of health conditions, with HIV/AIDS (20.5%), cancer (10.1%), and diabetes (7.1%) being the most frequently studied. Generic HRQoL tools such as WHOQOL-BREF (19.7%), SF-36 (16.4%), and EQ-5D (13.1%) were the most commonly utilized, accounting for nearly half of all studies. The analysis of information reporting practices for EQ-5D instruments revealed inconsistencies, with only 30.2% of studies reporting all three components (descriptive profile, index scores, and EQ-VAS).</p><p><strong>Conclusion: </strong>This review highlighted the increasing use of HRQoL measures in African health research over the past two decades while identifying significant gaps. Most studies were descriptive, concentrated in a few countries, and primarily conducted in healthcare settings, limiting broader applicability. The frequent use of generic HRQoL instruments underscores their importance and cultural adaptation. Additionally, inconsistencies in reporting practices and methodological limitations hinder the comparability and utility of findings. To advance HRQoL research and its application, it is essential to address these gaps through standardized guidelines, broader geographical representation, and improved methodological rigor.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-05-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13442791/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148139149","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Justifying score interpretation thresholds for the Asthma Control Questionnaire (ACQ-5) in a contemporary asthma patient population.","authors":"George Skingley, Mattea Orsini, Jessica Middlehurst, Jessica Flynn, James Brookes, Hermione Blackwood, Nathan Clarke, Rebecca Williams-Hall, Benoit Arnould, Renata Martincova, Jane Wells","doi":"10.1186/s41687-026-01097-y","DOIUrl":"10.1186/s41687-026-01097-y","url":null,"abstract":"<p><strong>Background: </strong>The 5-item Asthma Control Questionnaire (ACQ-5) is widely used in clinical trials to assess the adequacy of asthma symptom control and any changes in asthma control as a result of treatment. Evidence supporting the psychometric properties of the ACQ-5, including a 0.5-threshold for meaningful improvement, was derived using methods that are no longer recommended in the literature or by regulatory authorities. The primary objective of this research was to derive meaningful change estimates using contemporary methods to evaluate clinically important change for the ACQ-5. A secondary objective was to evaluate the applicability of the existing ACQ-5 asthma control threshold for defining \"well-controlled\" asthma (ACQ-5 ≤ 0.75).</p><p><strong>Methods: </strong>Measurement properties (item performance, reliability, validity, and responsiveness) were assessed prior to evaluating meaningful change, using data from a sample of 196 adults with inadequately controlled moderate-to-severe asthma from a placebo-controlled, Phase 2 study of rilzabrutinib (NCT05104892). Anchor- and distribution-based analyses were used to derive meaningful within-patient change (MWPC) and meaningful between-group difference (MBGD). Applicability of the existing ACQ-5 asthma control threshold was evaluated by plotting the positive predictive value (PPV) and negative predictive value (NPV) of the ACQ-5 total score in the current study against the PPV and NPV calculated in the original Juniper et al. (2006) study.</p><p><strong>Results: </strong>High internal consistency (Cronbach's alpha = 0.90), moderate-to-strong convergent validity (r range: 0.52-0.83), and ability to detect improvements in asthma control based on psychometric and physiological measures were demonstrated for the ACQ-5. Test-retest reliability results were poor-to-moderate (intraclass correlation coefficient range: 0.30-0.66). Of the anchor-based estimates derived (0.2 to 1.6), empirical cumulative distribution function plots supported 0.6 or 0.8 as appropriate MWPC thresholds. Estimated MBGD ranged from 0.2 to 0.6. PPV/NPV plots supported continued use of a 0.75- threshold to determine \"well-controlled\" asthma.</p><p><strong>Conclusion: </strong>Contemporary score interpretation methods support a MWPC threshold of ≥ 0.6, which is functionally identical to the extant threshold of ≥ 0.5, given the 0.2 increments of the ACQ-5 scale. MBGD ranged from 0.2 to 0.6, further supporting use of the established ≥ 0.5 threshold to define clinically important change between groups of patients. A \"well-controlled\" threshold of ≤ 0.75 was also supported.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-05-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13442793/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148139180","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Bridging the gap: enhancing patient and public involvement in dermatology PRO research.","authors":"Ella Brookes, Efstathios Zikos, Laurence Lucats, Loic Notelet, Giorgio Ferrari, Arnaud Magnier, Benoit Arnould","doi":"10.1186/s41687-026-01069-2","DOIUrl":"10.1186/s41687-026-01069-2","url":null,"abstract":"","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-05-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13424030/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148057369","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Equating patient-reported outcomes: developing a psychometric crosswalk between Scoliosis Quality of Life Index (SQLI) and Scoliosis Research Society (SRS-22r) to support long-term follow-up research in patients with adolescent idiopathic scoliosis.","authors":"David Dueber, Henry Iwinski, Vishwas Talwalkar, Donna Oeffinger","doi":"10.1186/s41687-026-01087-0","DOIUrl":"10.1186/s41687-026-01087-0","url":null,"abstract":"<p><strong>Background: </strong>Despite widespread use of patient-reported outcome measures (PROs), research on measures in adolescent idiopathic scoliosis (AIS) is limited due to scarce large, long-term datasets. Our site began routinely collecting PRO data from patients with AIS in 2007, providing a robust longitudinal dataset. Initially, we used the adolescent-validated Scoliosis Quality of Life Index (SQLI) before transitioning to Scoliosis Research Society (SRS-22r) in 2010. Despite having over 2,400 pre-transition SQLI assessments, inability to convert SQLI to SRS-22r scores has limited our ability to use early data for long-term outcomes research. Recognizing this, we collected SQLI and SRS-22r concurrently, creating a unique opportunity to develop and validate a cross-walk between the two. The primary study aim is to establish such cross-walks, enabling the integration of historical SQLI data into contemporary longitudinal studies and meta-analyses.</p><p><strong>Methodology: </strong>Using a common persons linking design, this study analyzed SQLI and SRS-22r data from adolescents with idiopathic scoliosis collected during routine clinical care. Calibration and validation samples were formed from patients with concurrent administrations, supplemented by single-instrument visits. Assumptions for linking were evaluated through internal consistency, inter-measure correlations, confirmatory factor analysis, and sex-based invariance testing. Linear equating, equipercentile equating, and Rasch-based true score equating were evaluated using bias, RMSE, correlations, and Bland-Altman plots.</p><p><strong>Results: </strong>All domains met recommended criteria for linking, with strong correlations and low average errors. Linear equating consistently outperformed alternative methods, yielding minimal bias and stable error across score ranges. Linked scores demonstrated high agreement with observed SRS-22r scores for pain, self-image, and mental health, and moderate agreement for function. Linking of change scores resulted in somewhat lower correlations and higher mean error; however, bias remained small, suggesting that longitudinal group-level comparisons are supported.</p><p><strong>Conclusions: </strong>Crosswalks between historical SQLI and SRS-22r data were established, enabling their integration in long-term studies. While most domain linkages are strong, the function domain shows moderate quality. Aggregated transformed SQLI scores can reliably represent SRS-22r scores, allowing valuable historical data to inform treatment outcomes. This advancement enables more comprehensive longitudinal outcomes research by integrating patient-reported outcomes with clinical measures.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-05-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13424045/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148057361","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}