Journal of Patient-Reported Outcomes最新文献

{"title":"Using electronic patient reported outcomes (ePROs) to improve supportive care in ambulatory oncology care: a CFIR-guided pre-implementation formative evaluation.","authors":"Eden R Brauer, Roshan Bastani, Eric Cheng, Stephanie Lazaro, Deborah J Wong, Maie A St John, Patricia A Ganz","doi":"10.1186/s41687-026-01144-8","DOIUrl":"10.1186/s41687-026-01144-8","url":null,"abstract":"<p><strong>Background: </strong>Systematic collection of patient-reported outcomes via electronic health records can improve symptom assessment and supportive care delivery in oncology, yet implementation is often hindered by inadequate attention to end-user needs and organizational context. Guided by an implementation science framework, we conducted a formative evaluation to inform design and implementation planning of an electronic patient-reported outcome supportive care screening system in ambulatory oncology care, using head and neck cancer as a use case.</p><p><strong>Methods: </strong>A prospective mixed-methods observational study was conducted using semi-structured interviews as part of a pre-implementation formative evaluation. Eligible participants were target users of the proposed supportive care screening system, including (1) clinical staff and (2) patients with head and neck cancer from a single health care system. Using the Consolidated Framework for Implementation Research as a guiding framework, we elicited user feedback through interview and prototype engagement. Quantitative measures included patient symptom burden and validated pre-implementation measures of acceptability, appropriateness, feasibility, and usability. For data analyses, we used directed content analysis and matrix analysis for qualitative data, and descriptive and comparative statistics for quantitative assessments.</p><p><strong>Results: </strong>Forty-six target users (20 clinical staff, 26 patients) participated. Both groups expressed strong tension for change, recognizing many inadequacies of the current approach to symptom assessment. Clinical staff described current practices as \"haphazard,\" while patients recounted missed opportunities for support and preventable harm. Electronic health record integration enhanced perceived compatibility, though time constraints and alert fatigue emerged as potential barriers. Clinical staff emphasized the need for clear symptom thresholds and actionable referral criteria; patients emphasized that their sustained engagement depended on evidence of clinicians using the data in their care. Pre-implementation scores indicated strong readiness across both groups: acceptability (clinical staff 4.47/5, patients 4.21/5), appropriateness (4.46/5, 4.24/5), feasibility (4.41/5, 4.35/5), and usability (82.2/100, 85.6/100). Findings informed key design priorities and implementation strategies.</p><p><strong>Conclusions: </strong>Systematic pre-implementation formative evaluation revealed important barriers, facilitators, and contextual insights that shaped both intervention design and implementation approach. High scores on leading indicators suggest strong organizational readiness and perceived value. This user-informed development process provides a replicable model for optimizing electronic patient-reported outcome systems before deployment.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-07-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148537291","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Measuring fatigue four years after stroke: a bi-factor analysis of the Norwegian Chalder Fatigue Questionnaire.","authors":"Synne G Pedersen, Oddgeir Friborg, Audny Anke, Marianne B Halvorsen, Mari T Løkholm, Marte Christine Ørbo","doi":"10.1186/s41687-026-01151-9","DOIUrl":"10.1186/s41687-026-01151-9","url":null,"abstract":"<p><strong>Background: </strong>Post-stroke fatigue (PSF) is a persistent and debilitating condition. Assessing its characteristics and severity accurately is important, but the suitability of existing fatigue instruments for use in stroke populations is uncertain. The Chalder Fatigue Questionnaire (CFQ) is a widely used generic measure capturing both mental and physical fatigue, but the dimensionality of the 11-item CFQ is debated. The objective of this study was to examine the best-fitting model for the CFQ and evaluate whether the addition of latent specific factors for the physical and mental items provided meaningful information beyond the latent general fatigue score.</p><p><strong>Methods: </strong>We examined three competing measurement model of the CFQ - unidimensional, correlated two-factor (physical and mental fatigue) and a bi-factor model in a sample of 144 individuals at 4 years post-stroke. Furthermore, we investigated how other criterion-related variables correlated with the estimated CFQ factor scores compared with the simple CFQ.</p><p><strong>Results: </strong>The bi-factor measurement model had best fit. Partial correlation analyses indicated that a simple overall fatigue score aligns relatively well with the estimated general factor score, as does the physical sum score. This indicates that separate physical and mental sum scores provide no additional value, whereas their estimated latent specific factors contribute more information. Men reported less fatigue, and except for gender most of the demographic variables were not significantly correlated with the CFQ variables.</p><p><strong>Conclusion: </strong>Despite best psychometric support for a bi-factor measurement model, a simple overall sum score may be used to assess fatigue severity satisfactorily. While separate physical and mental factors provide noteworthy nuance, their contribution is in practice limited. Future research should consider refining the mental fatigue items if a more precise assessment or a more nuanced clinical applicability of the physical-mental separation following stroke is needed.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-07-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13620014/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148550799","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":"Integrating PROMIS measures into an interventional spine workflow: a quality improvement study.","authors":"Cole Cheney, Martha Springsted, Tejaswini Pisati, Jason Dauffenbach","doi":"10.1186/s41687-026-01152-8","DOIUrl":"10.1186/s41687-026-01152-8","url":null,"abstract":"<p><strong>Objective: </strong>To evaluate and improve the integration of Patient-Reported Outcomes Measurement Information System (PROMIS) data collection within an interventional spine workflow, and to assess feasibility through completion rates before and after a structured workflow intervention.</p><p><strong>Design: </strong>Retrospective quality improvement study with pre-post intervention analysis.</p><p><strong>Setting: </strong>Academic community-based health system.</p><p><strong>Subjects: </strong>Seventy-one unique patients (73 procedures) treated with BVNA between 2022 and 2025.</p><p><strong>Methods: </strong>PROMIS Pain Interference, Pain Intensity, and Physical Function surveys were administered at baseline and at 3-, 6-, and 12-month follow-up using EHR-embedded automated workflows. In parallel, a structured quality improvement intervention was implemented to improve survey completion via emphasis on baseline survey completion. The intervention included a standardized nursing rooming checkpoint to verify PROMIS completion prior to the procedure, staff education with scripted patient engagement language, real-time EHR visual prompts using dot phrases to identify incomplete surveys, and monthly site-level performance dashboards reviewed with clinical staff and leadership. Completion rates were extracted from institutional dashboards and workflow bottlenecks were identified through process mapping and staff feedback. Fisher's exact test was used to compare pre- and post-intervention baseline PROMIS completion rates. Clinic visit duration was tracked as a balancing measure to evaluate potential workflow burden.</p><p><strong>Results: </strong>Seventy-one patients underwent 73 BVNA procedures. Completion rates were 31.82% at baseline, 77.78% at 3 months, 40.00% at 6 months, and 100% at 12 months among patients reaching those timepoints. Longitudinal engagement was 56%, while longitudinal completeness was 33%. Baseline survey completion improved from 31.82% (21/66) before intervention to 100% (6/6) following implementation during the post-intervention three month observation period. Clinic workflow efficiency was not adversely affected, with 83% of visits remaining within the standard 30-minute time slot and no statistically significant increase in visit duration.</p><p><strong>Conclusions: </strong>PROMIS data collection during interventional spine care is feasible and can be reliably integrated into routine clinical workflows when supported by targeted quality improvement interventions. Improving baseline survey capture potentially expands the denominator of patients eligible for longitudinal outcome measurement without increasing clinical workload. Hybrid implementation strategies combining automated EHR deployment with structured clinical oversight may enable reliable PROMIS integration in procedural spine practice.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-07-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13672753/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148521144","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":"Identifying patient profiles to personalize care and improve quality of life in EGPA patients: a national cross-sectional survey.","authors":"Francesca Romana Torracca, Roberto Padoan, Giacomo Emmi, Lara Bernardi, Maria Rosaria Mollo, Omar Shalby, Fabio Tedone, Davide Cafiero, Eugenia Durante","doi":"10.1186/s41687-026-01149-3","DOIUrl":"10.1186/s41687-026-01149-3","url":null,"abstract":"<p><strong>Background: </strong>Eosinophilic granulomatosis with polyangiitis (EGPA) is a rare, chronic disease that significantly affects quality of life (QoL). Despite improved survival, many patients experience persistent symptoms and complex care needs. Patient-reported data on QoL and perceived care quality remain limited, particularly in Italy. This study aimed to assess health-related QoL and patient-perceived care quality among Italian EGPA patients and to identify distinct patient profiles through cluster analysis to inform personalized, multidisciplinary care strategies.</p><p><strong>Methodology: </strong>We conducted a cross-sectional, 77-item online survey among adult EGPA patients (self-reported diagnosis) between December 2024 and January 2025. The survey, developed with APACS APS (Associazione Pazienti con Sindrome di Churg-Strauss), was distributed via the SurveyMonkey platform. It included validated instruments: SF-36 for health-related QoL and PACIC (with PACIC-5As) for perceptions of chronic care. Additional demographic, clinical, and disease impact data were collected. Descriptive statistics and group comparisons were performed. SF-36 and PACIC domains were analyzed using principal component analysis (PCA), followed by k-means clustering to identify patient subgroups.</p><p><strong>Results: </strong>Seventy-two patients completed the survey (mean age 56; 65% female; median disease duration 7 years; 84.7% on biologics; 41.7% on glucocorticoids). SF-36 scores showed moderate QoL impairment (mean PCS 56.3 ± 24.6; MCS 59.3 ± 24.1), with lower QoL among females, divorced/separated individuals, and those with neurological involvement. Paresthesia had the greatest impact, affecting multiple QoL domains and daily functioning (p < 0.05). PACIC scores reflected moderate perceptions of care (2.8-3.5), with lowest scores in \"Goal Setting\" and \"Care Coordination.\" PACIC-5As scores were low (mean 2.3), indicating suboptimal collaborative care. Cluster analysis identified three profiles: (1) poor QoL with high healthcare engagement (n = 12); (2) best QoL and care ratings (n = 38); (3) intermediate health status but lowest PACIC scores (n = 22), reflecting perceived lack of support. Differences across clusters were statistically significant (p < 0.001).</p><p><strong>Conclusions: </strong>Italian EGPA patients report impaired QoL and only moderate care quality, with notable heterogeneity in experiences. Personalized, multidisciplinary approaches are needed, especially for patients who feel under-supported despite moderate disease activity.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-07-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13672744/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148521136","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":"Take PART: development and usability evaluation of a computerized assessment of functional autonomy and participation in adolescents.","authors":"Liron Lamash, Merav Porath, Efrat Landes, Yael Fogel","doi":"10.1186/s41687-026-01153-7","DOIUrl":"10.1186/s41687-026-01153-7","url":null,"abstract":"<p><strong>Background: </strong>Adolescence is a critical developmental period characterized byincreasing independence, functional autonomy, and participation across lifedomains. Despite the importance of supporting adolescents in reflecting ontheir functioning and identifying meaningful goals, few adolescent-centeredtools enable self-assessment of functional autonomy and participation inengaging, digitally accessible formats. This study aimed to develop Take PART(Participation and Activities Rating for Teenagers), a computerized assessmentof functional autonomy and participation, and evaluate its usability.</p><p><strong>Methods: </strong>The development of Take PARTwas conducted in two phases. Phase 1 focused on content generation and platformdevelopment using adolescent-reported activities, expert review, and auser-centered design process. Activities were organized into five life domains:self-care; daily activities at home and in the community; academicparticipation; work and volunteering; and leisure/social participation. Phase 2evaluated usability among 119 adolescents aged 12-18 years and 50 examinersusing the Post-Study System Usability Questionnaire (PSSUQ).</p><p><strong>Results: </strong>Adolescent reports informed the development of a 65-itemassessment reflecting everyday participation and functional autonomy. Expertreview contributed to the refinement of the domains, items, and platformstructure. The final assessment supports individualized domain selection andcollaborative goal-setting. Usability findings indicated high levels of systemusefulness, information quality, and interface quality among both adolescentsand examiners.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-07-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13672767/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148521222","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":"Measuring group‑ and individual‑level change of FACIT- fatigue, NFLymSI-18 and PROMIS fatigue measures (4a, 7a and 13a) in lymphoma.","authors":"Maja Kuharic, Kimberly A Webster, Anne R Zola, Maria E Corona, Elijah A Patten, Reem Karmali, Leo Gordon, Shuo Ma, John D Peipert, David Cella","doi":"10.1186/s41687-026-01154-6","DOIUrl":"10.1186/s41687-026-01154-6","url":null,"abstract":"<p><strong>Background: </strong>Fatigue significantly impacts quality of life in lymphoma patients. Multiple patient-reported fatigue measures are used in lymphoma research, including FACIT-Fatigue and PROMIS Fatigue instruments, but direct comparisons of their responsiveness and ability to detect individual-level change in this population are lacking. This study evaluated the responsiveness and sensitivity to individual-level change of Functional Assessment of Chronic Illness Therapy-Fatigue (FACIT-Fatigue), Patient-Reported Outcomes Measurement Information System (PROMIS) Fatigue measures (4a, 7a, and 13a), and NFLyMSI-18 Lymphoma Symptom Index in patients with lymphoma.</p><p><strong>Methodology: </strong>In a prospective observational study, 102 lymphoma patients at an academic cancer center completed FACIT‑Fatigue, PROMIS Fatigue 4a, 7a, and 13a, and NFLymSI‑18 at baseline and again at 3 months (n = 89). Responsiveness was evaluated using standardized response means (SRMs) for patients classified as improved or worsened via clinical anchors: Patient Global Rating of Change, Patient Global Rating of Severity, Patient Global Rating of Severity Interference, and PRO-CTCAE severity and interference fatigue items. Individual-level change was evaluated using Reliable Change Index (RCI) and Likely Change Index (LCI).</p><p><strong>Results: </strong>SRM magnitudes varied by anchor and direction of change. For improvement, FACIT-Fatigue and NFLymSI-18 showed consistent responsiveness (SRMs 0.67-1.01 and 0.62-0.89, respectively), while PROMIS measures showed more variability (SRMs 0.31-1.58). For worsening, PROMIS measures, particularly 4a and 13a, demonstrated larger SRMs (0.75-1.71) than FACIT-Fatigue (0.73-1.24) or NFLymSI-18 (0.57-0.84) for most anchors. LCI analyses identified reliable improvement in 31.5% of patients using FACIT-Fatigue and 24.7-33.7% with PROMIS, and reliable worsening in 24.7% using FACIT-Fatigue and 23.6-34.8% using PROMIS measures.</p><p><strong>Conclusions: </strong>Among lymphoma patients, FACIT-Fatigue and PROMIS Fatigue measures are responsive to meaningful change, with somewhat differing magnitude estimates across anchors and direction of change. These findings support planning for the use and interpretation of these fatigue measures in future clinical trials.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-07-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13672741/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148498223","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":"Health information systems integrating patient-reported outcomes and experience: a scoping review.","authors":"Pierre-Henri Roux-Levy, Marie-Eve Poitras, Wilfried Supper, Attisso Eugène, Marie-Ève Perron, Frédéric Bergeron, Michèle Dugas, Denis Roy, Vanessa Tremblay-Vaillancourt, Marie-Pierre Gagnon, Maxime Sasseville","doi":"10.1186/s41687-026-01146-6","DOIUrl":"10.1186/s41687-026-01146-6","url":null,"abstract":"<p><strong>Introduction: </strong>Value-based healthcare (VBHC) implementation is seen as a priority in many healthcare systems worldwide because it advocates for the best health outcomes that matter to patients at the best cost. Patient-reported outcomes measures (PROMs) and patient-reported experience measures (PREMs) are increasingly used to capture this patient's perspective on their health and their experience of care. Consequently, to promote VBHC, an international emergence of health information systems integrating PROMs and PREMs has developed.</p><p><strong>Objectives: </strong>The goal of our study was to (1) identify the main existing health information systems integrating PROMs and PREMs and (2) describe how their use supports VBHC and value-based decision-making at meso or macro levels.</p><p><strong>Methods: </strong>We conducted a scoping review using the Joanna Briggs Institute (JBI) methodology. We conducted a systematic search across MEDLINE, Embase, CINAHL, PsycINFO, Web of Science and Academic Search Complete databases. We carried out a mixed thematic analysis using deductive (frameworks of Franklin et al. and CIHI) and inductive approaches.</p><p><strong>Results: </strong>We screened 7,497 papers from which the title and abstract of 526 papers were identified as relevant for full-text review. A total of 12 papers were retained for analysis identifying systems from six different countries. We described these systems according to four types of governance strategies. PROMs and PREMs tools were selected according to the population segments chosen. They were collected through paper, phone, and digital technologies. Barriers such as lack of time, administrative burden, reluctance to implementation and facilitators such as identifying champions, integrating patients into the process, efficient communication were described. The real-time reporting of data was an interesting innovation that was developed in several systems. PROMs and PREMs were used for benchmarking, quality improvement, performance evaluation but no concrete example of use were reported.</p><p><strong>Conclusion: </strong>This scoping review identifies international initiatives of health information systems integrating PROMs and PREMs. The mechanisms use to support value-based decision-making with this data at meso and macro levels are yet to be fully described. Nonetheless, these results will enable countries to learn from the approaches of others to improve the development and implementation of similar initiatives to support value-based healthcare decision-making.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-07-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13672266/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148473336","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":"Can parents reliably report burn scar quality on behalf of their child? A clinimetric observational study of child-proxy agreement on the pediatric patient scale of the POSAS.","authors":"Frederique M Kemme, Mieke Anthonissen, Annebeth Meij-de Vries, Pien Lelifeld, Thibau Demarbaix, Paul P M van Zuijlen, Anouk Pijpe","doi":"10.1186/s41687-026-01140-y","DOIUrl":"10.1186/s41687-026-01140-y","url":null,"abstract":"<p><strong>Background: </strong>The assessment of scar quality is an essential component of follow-up care and outcome evaluation in pediatric burn patients. The pediatric patient scale of the Patient and Observer Scar Assessment Scale (POSAS) is a recently developed patient-reported outcome measure (PROM) for this purpose. In pediatric care, proxy reports are commonly used when children are too young to self-report. However, the extent to which proxy reports reflect children's own perception of scar quality is unclear. This study evaluated child-proxy agreement on the pediatric patient scale of the POSAS.</p><p><strong>Methodology: </strong>In this clinimetric observational study, children aged 8-17 years with burn scars and their proxies (parent or other caregivers) were recruited at the Burn Center in Beverwijk, The Netherlands, and aftercare center OSCARE in Antwerp, Belgium. Both the child and a proxy independently completed the pediatric patient scale of the POSAS, with proxies instructed to report from the child's perspective (proxy-patient perspective). Child and proxy item scores were described using medians and interquartile ranges (IQR) and compared using the Wilcoxon signed-rank test. Effect sizes were calculated to quantify the magnitude of differences. Agreement was examined at two levels: (1) presence or absence of complaints and (2) severity ratings. Subgroup analyses were performed for age category and proxy type.</p><p><strong>Results: </strong>A total of 81 child-proxy pairs were included between January and April 2025. Agreement on item level ranged from fair to substantial (kappa 0.309-0.692) and was moderate for most items. Overall agreement on the presence or absence of complaints was high (mean 78% concordance across items). Proxies reported worse scores than children for color, bumpiness, thickness, tightness, and lines, whereas children reported worse scores for hair growth (p < 0.05). Differences were generally small (≤1 response category). Agreement did not significantly differ across age groups or proxy type.</p><p><strong>Conclusions: </strong>In general, parents can report the presence or absence of their child's scar complaints and can provide an indication of the severity of the complaint. Proxy reports can meaningfully contribute to scar assessment in pediatric burn care and research when self-report is not possible. The decision to use proxy reports should be guided by the intended purpose of measurement.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-07-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13658675/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148473328","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":"Wider stakeholders' perspectives on successfully implementing electronic patient-reported outcome systems across organisations: a qualitative study in kidney care.","authors":"Sabine N van der Veer, Angelo Ercia, Fergus J Caskey, Ken Farrington, Michael Rees, Sarah Knowles","doi":"10.1186/s41687-026-01137-7","DOIUrl":"10.1186/s41687-026-01137-7","url":null,"abstract":"<p><strong>Background: </strong>Large-scale ePRO systems inherently need to cross organisational boundaries to meet their full potential for improving care and outcomes. Doing this successfully requires involving all stakeholders. However, previous research in kidney disease and other conditions mainly focused on individual patients and healthcare professionals, leaving wider stakeholders' perspectives on how to implement cross-organisational ePRO systems unknown.</p><p><strong>Methodology: </strong>We conducted 18 semi-structured interviews with key informants from national stakeholder organisations involved in delivering, commissioning, evaluating, or improving hospital-based kidney services in the United Kingdom. Interviews explored participants' views on kidney ePRO systems, including their perceived value, implementation challenges, and factors influencing uptake in routine kidney care. We applied the i-PARIHS implementation science framework to thematically analyse the data.</p><p><strong>Results: </strong>Participants reported limited awareness of kidney ePROs and their potential benefits within their communities. Acknowledging constrained resources and competing priorities within the healthcare system, stakeholders suggested harnessing existing regional service improvement networks to support ePRO system implementation into kidney care pathways. They emphasised the need for coordinated efforts among national stakeholder organisations to drive and support local implementation. They also identified high quality evidence of ePROs' clinical utility and positive impact on kidney care and outcomes as a requirement for successful large-scale implementation, highlighting different types of impact as primarily relevant. Anecdotal evidence of ePRO benefits and real-world evidence of feasibility from local pilots were mentioned as complementary sources of knowledge to strengthen the case for cross-organisational ePRO system implementation in kidney care settings.</p><p><strong>Conclusions: </strong>Successfully implementing cross-organisational ePRO systems in kidney services requires stakeholders to be better informed about ePROs' potential value, supported by robust and real-world evidence derived from studies in kidney disease. In a healthcare system under pressure, leveraging existing regional service improvement initiatives and coordinated leadership from a national cross-stakeholder group were considered key drivers of implementation success. Future research should strengthen the evidence base for kidney ePRO systems' effectiveness and implementation, while also exploring available health IT infrastructure. This will shape implementation strategies that enable healthcare systems to fully realise the potential of ePROs to improve kidney services and outcomes.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-07-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13658655/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148449712","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":"Adaptation and validation of the scleroderma skin patient-reported outcome questionnaire into Hungarian.","authors":"Panna Pytel, Ágnes Ágoston-Szabó, Attila Szabó, Gábor Kumánovics, Gabriella Nagy","doi":"10.1186/s41687-026-01147-5","DOIUrl":"10.1186/s41687-026-01147-5","url":null,"abstract":"<p><strong>Introduction: </strong>Skin involvement in patients with systemic sclerosis (SSc) can significantly impair quality of life, affecting psychological, physical, and social well-being. The Scleroderma Skin Patient-Reported Outcome (SSPRO) questionnaire was developed to assess these dimensions.</p><p><strong>Objective: </strong>The aim of this study was to adapt and validate the SSPRO questionnaire in Hungarian.</p><p><strong>Patients and methods: </strong>The study enrolled 60 patients with SSc [53 women, 7 men; mean age 57.7 ± 13.5 years; diffuse cutaneous SSc n = 31 (51.7%)] and 31 age- and sex-matched healthy controls (mean age 57.9 ± 14.9 years). The 18-item SSPRO questionnaire was adapted into Hungarian using a standardized forward-backward cross-cultural translation procedure. Psychometric evaluation was performed in accordance with COSMIN recommendations and included assessment of content validity, structural validity, internal consistency, convergent validity, known-groups validity, reproducibility, and scaling properties.</p><p><strong>Results: </strong>No significant floor or ceiling effects were observed. Internal consistency was acceptable (Cronbach's α = 0.789). Structural validity analysis using principal component analysis identified a dominant first component explaining approximately 50% of the total variance, suggesting a primarily unidimensional structure with secondary underlying dimensions. Convergent validity analysis demonstrated significant correlations between SSPRO scores and established measures of quality of life and disease impact. Known-groups validity was confirmed by the ability of the questionnaire to distinguish between patients with SSc and healthy controls, while no significant differences were observed between limited and diffuse cutaneous SSc subgroups. Test-retest reliability demonstrated excellent agreement (ICC(2,1) = 0.894, 95% CI: 0.764-0.932).</p><p><strong>Conclusion: </strong>The Hungarian version of the SSPRO questionnaire is a reliable and valid instrument for assessing skin-related quality of life in patients with SSc. It provides a quick, simple, and clinically useful tool that captures patient-reported aspects of disease burden not reflected by physician-based measures.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-07-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13646231/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148438345","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}