Journal of Patient-Reported Outcomes最新文献

{"title":"Short form scale of parent self-efficacy for general and specialized care for children with special health care needs.","authors":"Carolyn Foster, Leonardo Barrera, Aaron Kaat, David Cella, Courtney Blackwell, Matthew Davis, Ryan Coller, Marie Heffernan","doi":"10.1186/s41687-026-01143-9","DOIUrl":"10.1186/s41687-026-01143-9","url":null,"abstract":"<p><strong>Background: </strong>Self-efficacy in managing healthcare tasks has been shown to predict health behaviors and outcomes. Previous research has established the content validity of a full-length 30-item survey scale to assess the level of parents' self-efficacy when managing their children's healthcare tasks. The goal of this work was to create an efficient and psychometrically strong short form version to aid research and clinical practice.</p><p><strong>Methodology: </strong>We conducted scale construction using national cross-sectional survey data of English- and Spanish-speaking parents of children and youth with special health care needs (CYSHCN) 0-17 years old (9/2023-12/2023). Self-efficacy was assessed with a 5-point confidence scale [1 (not confident) to 5 (very confident)]. The sample was randomly evenly split into derivation and validation samples. Exploratory factor analyses (EFAs) and confirmatory factor analyses (CFA) were performed for the general (14-item), equipment (8-item), and medication care (6-item) long form subscales, but not the therapy and mobility care long form subscales, which were only 1-item long. Spearman correlations were used to assess convergent and divergent validity. Means and standard deviations (SD) were calculated for item scoring.</p><p><strong>Results: </strong>1,132 respondents participated (54% Non-Hispanic White; 68% mothers). Derivation and validation samples were n = 566 each. The EFAs revealed single-factor structures for general care items (Cronbach's alpha 0.95); medication care items (Cronbach's alpha 0.91); and equipment care items (Cronbach's alpha 0.85). CFA results confirmed EFA results, with 5 items for general care (Cronbach's alpha 0.87), 3 items for medication care (Cronbach's alpha 0.76), and 3 items for equipment care (Cronbach's alpha 0.77). The mean scores of the new short form subscales were 4.36 (SD = 0.73), 4.41 (SD = 0.77), and 4.19 (SD = 0.86) for general, medication, and equipment care, respectively.</p><p><strong>Discussion: </strong>This 13-item short form scale (5 general care, 3 equipment care, 3 medication care, 1 therapy care, and 1 mobility care sub-scales items) is an efficient, self-administered means of assessing parents of CYSHCN's self-efficacy with managing their child's healthcare. Future work will test the scale's feasibility and utility at identifying parents who may benefit from additional support and training.</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/PMC13650088/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148437714","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":"Linguistical and psychometric validation of the MIND Youth Questionnaire (My-Q) in Swedish.","authors":"Anna Lena Brorsson, David Rudilla, Max Kleijberg, Maartje deWit, Elena Lundberg, Anna Lindholm-Olinder","doi":"10.1186/s41687-026-01148-4","DOIUrl":"10.1186/s41687-026-01148-4","url":null,"abstract":"<p><strong>Background: </strong>The Mind Youth Questionnaire is a multidimensional health-related quality-of-life questionnaire designed for pediatric diabetes care and exists in Dutch, English, and Spanish.</p><p><strong>Methods: </strong>The aim of this study was to linguistically and psychometrically validate the Mind Youth Questionnaire (My-Q) for Swedish-speaking youths with type 1 diabetes. The linguistic process of the Dutch version followed ISPOR´s guidelines. For face validity, youths with type 1 diabetes and diabetes nurses were interviewed. Three stigma items were included. The final Swedish My-Q consists of 38 items. A total of 166 youths (10-19 years) completed the My-Q and Pediatric Quality of Life Inventory diabetes module. A 2nd -order confirmatory factor analysis was conducted using the nine-factor Dutch and five-factor Spanish versions.</p><p><strong>Results: </strong>The 2nd -order nine-factor solution (social impact, parents, diabetes control perceptions, responsibilities, worries, treatment satisfaction, body image and eating behavior, stigma, and mood) showed adequate fit: χ2(551) = 828.36 (p < .01), Comparative Fit Index (CFI) = 0.90, Root Mean Square Error of Approximation (RMSEA) = 0.05 [0.05,0.06], Standardized Root Mean Square Residual (SRMR) = 0.08. The nine-factor solution and grouping of the items followed a clear rationale. The reliability coefficients of the total scale were adequate, α = 0.86, Ω = 0.90, and Ω for all the factors ranged from 0.49 to 0.88. The relationships between My-Q factors and sociodemographic variables revealed that boys had better health-related quality of life than girls. Younger youths reported better health-related quality of life in terms of body image and eating behavior (p=.005). Concurrent validity was confirmed, as all the factors were positively related to all the Pediatric Quality of Life Inventory diabetes module factors. A negative correlation was found between the level of glycated hemoglobin and the My-Q score (r=-.258, p < .001).</p><p><strong>Conclusion: </strong>The Swedish My-Q has adequate psychometric properties and can be used in research and for routine psychosocial assessment.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"10 1","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-07-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13373108/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148449685","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":"Applying cognitive interviewing process to refine an instrument for measuring deprescribing experience and outcomes in older veterans.","authors":"Helen Omuya, Sura AlMahasis, Ejura Salihu, Lauren Welch, Trisha Raňola, Justine Manning, Shiying Mai, Betty Chewning","doi":"10.1186/s41687-026-01145-7","DOIUrl":"10.1186/s41687-026-01145-7","url":null,"abstract":"<p><strong>Background: </strong>Currently, there is no validated instrument that assesses a patient's reported deprescribing experiences and outcomes. This study reports the third phase of refining such an instrument, the Deprescribing Evaluation and Quality Improvement instrument (DEQI), using cognitive interviews. Cognitive interviews have been used in the development of many survey tools; however, there is limited evidence of their use in pharmacy research, particularly in deprescribing studies involving older adults. The aim of this phase of the DEQI instrument development is to evaluate and refine the individual items to enhance their clarity to accurately reflect patient-reported experiences and outcomes after deprescribing interventions.</p><p><strong>Methods: </strong>A draft DEQI Instrument was tested through two rounds of cognitive interviews conducted four weeks apart, involving 16 Veteran adults aged 65 or older who were on multiple medications. Interviews lasted about 60-90 min. Two cognitive interviewing techniques, \"think-aloud\" and \"verbal probing,\" were used. Data from the interviews were independently analyzed by four coders employing two coding techniques: interaction coding and the cognitive classification scheme (CCS) to identify problematic questions in the DEQI instrument. Based on the analysis of the first round, the items were revised and then administered again in a second round. The improvement in clarity was evaluated.</p><p><strong>Results: </strong>Participants were mostly male (88%) and non-Hispanic White (69%), with a mean age of 73.4 years (range 64-84). About 38% had some college or technical school education. The classification coding scheme identified 102 problematic items in the first round, with approximately 70% related to the comprehension and communication code, and around 14% related to response selection. After modifications and readministration in the second round, the number of identified problems dropped significantly from 102 to 21. Following the revision in the second round, the proportion of \"immediately codable\" answers increased significantly (from 0.68 to 0.80), while the proportions of \"uncodable\" answers and \"items requiring clarification\" decreased.</p><p><strong>Conclusions: </strong>This study demonstrates the use of interaction coding and CCS to refine an effective evaluation instrument to improve deprescribing interventions with an older Veteran population. Through iterative refinement of items based on cognitive interviews, over half of the DEQI instrument's items were improved, resulting in clearer items and reduced confusion among participants.</p><p><strong>Clinical trial number: </strong>Not applicable.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-07-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13646242/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148437462","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":"Understanding Health-related quality of life in rheumatologic diseases: insights from PROMIS^® health domains.","authors":"Milan Kock, Christoph Paul Klapproth, Annika Döhmen, Jonas Prenißl, Felix Fischer, Udo Schneider, Matthias Rose, Alexander Obbarius","doi":"10.1186/s41687-026-01138-6","DOIUrl":"10.1186/s41687-026-01138-6","url":null,"abstract":"<p><strong>Background: </strong>Rheumatologic diseases significantly impact health-related quality of life (HRQoL), affecting physical, mental, and social well-being and pose unique challenges due to their wide range of symptoms. Patient-reported outcomes (PROs) provide valuable insights into how these diseases influence different dimensions of HRQoL, supporting personalized healthcare approaches.</p><p><strong>Methodology: </strong>In this cross-sectional study, we examined HRQoL in 213 patients with rheumatologic diseases, including, among others, rheumatoid arthritis, localized pain disorders, connective tissue diseases, and rarer conditions such as vasculitis, using the EQ5D-5L and the Patient-Reported Outcomes Measurement Information System (PROMIS^®) as well as Pain and HRQoL specific PROs. We provided PROMIS health domain scores of key health aspects such as physical function, fatigue, pain interference, and social participation. Additionally, we compared HRQoL and PROMIS domain scores with a German general population reference sample and conducted exploratory comparisons across the three most frequent principal diagnosis groups: systemic sclerosis, rheumatoid arthritis, and vasculitis. Moreover, we investigated which patient-reported health domains were most strongly associated with HRQoL in these diseases. Penalized regression models with elastic net regularization were used to identify stable predictors of HRQoL, followed by a pooled linear regression model for interpretation.</p><p><strong>Results: </strong>Individuals with rheumatic diseases had significantly lower HRQoL than the general population (EQ-5D-5L VAS mean: 55.4 versus 73.2). PROMIS T-scores indicated markedly reduced Physical Function (M = 36.5, SD = 9.6) and elevated pain interference (M = 61.7, SD = 9.2). Penalized regression analyses identified Physical Function, Fatigue, Ability to Participate in Social Roles and Activities as stable predictors of EQ-5D-5L VAS. Higher Physical Function and Social Participation were associated with higher HRQoL, whereas higher Fatigue was associated with lower HRQoL.</p><p><strong>Conclusions: </strong>These results highlight the importance of PROs in understanding the patient experience in rheumatologic disease and identifying individual needs. Routine assessment of HRQoL domains may help recognize unmet needs and support individualized care in rheumatology.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"10 1","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-07-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13356101/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148424456","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":"Lifetime congenital urologic care: centering patient voices.","authors":"Xinyuan Zhang, Annaliese C Ionson, Ashley C Groth, Kimberly A Allen, Riley Adams, Thomas Vincent, Liz Sage, Molly DeWitt-Foy, Daniel Wood, Judith C Hagedorn, Hadley M Wood, Lindsay A Hampson","doi":"10.1186/s41687-026-01141-x","DOIUrl":"10.1186/s41687-026-01141-x","url":null,"abstract":"<p><strong>Background: </strong>Adults with congenital urologic conditions, such as bladder exstrophy and vesicoureteral reflux, often require lifelong care that begins with childhood surgical reconstructions and extends through adolescence and adulthood with ongoing surveillance, follow-up care, and revision procedures when needed. Measurement of \"success\" can be difficult to quantify, as the definition of success may differ between parents and patients later in adulthood, and the definition of success should extend beyond f technical success to the broader care interventions and long-term outcomes, which often requires decades of follow-up time. The traditional clinician-defined endpoints may not capture what patients consider as \"success\" in the context of the adult patients' evolving goals for urinary function, sexual health, fertility, body image, and mental health across the lifetime. Patient-centered outcomes research offers a framework for centering patient voices, yet this has rarely been applied in adult congenital urology.</p><p><strong>Main body: </strong>Guided by the Patient-Centered Outcomes Research Institute (PCORI) foundational expectations in patient engagement, we developed a structured community-partnership methodology for the patient-centered research process in lifetime congenital urologic care. The framework includes six steps: (1) partnership formation; (2) inclusive recruitment and relationship building; (3) co-defining research questions; (4) collaborative data generation and interpretation; (5) dissemination and knowledge return; and (6) iterative reflection and process evaluation. We illustrate its application through two collaborations. First, with the Unsilenced Movement (UM), a patient advocacy group addressing medical trauma related to childhood voiding cystourethrogram testing, to qualitatively analyze patient narratives and co-interpret themes related to post-traumatic stress and healthcare avoidance; second, with the Association for the Bladder Exstrophy Community (ABEC) to co-design a patient-driven survey to assess goals, needs, and barriers across the lifespan for those living with bladder exstrophy. In both partnerships, patient representatives served as core research team members, co-authors, and co-presenters of findings, and ensured that patients' lived experiences were translated accurately in a rigorous methodology.</p><p><strong>Conclusion: </strong>This framework shows how early and sustained collaboration with patient advocacy communities can reshape research prioritization, outcome selection, and interpretation of data in lifetime congenital urologic care. By centering patients' lived experiences and defining success together, researchers can move beyond clinician-defined metrics towards outcomes that better reflect patient priorities. This methodology is adaptable to other congenital and chronic conditions requiring complex medical and urological care.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"10 1","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-07-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13350598/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148425076","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":"Assessment of internal consistency reliability and concurrent validity of PROMIS^® Dyspnea Characteristics v1.0, PROMIS^® Dyspnea Functional Limitations 10a, and PROMIS^® Global Health v1.2 in a dysautonomia cohort.","authors":"Andrew J Latham, John A O'Dell, Thanh Ho, Shelley Chavis, Silvia E Smith","doi":"10.1186/s41687-026-01134-w","DOIUrl":"10.1186/s41687-026-01134-w","url":null,"abstract":"<p><strong>Background: </strong>Dyspnea, or shortness of breath, is frequently reported among individuals with autonomic nervous system dysfunction, or dysautonomia. Currently, there are no validated dyspnea-specific patient-reported outcome measures for this population.</p><p><strong>Methodology: </strong>We conducted a patient-reported outcomes study to evaluate the internal consistency, reliability, and concurrent criterion-related validity of three PROMIS^® instruments: Dyspnea Characteristics v1.0, Dyspnea Functional Limitations 10a, and Global Health v1.2 in a cohort of adult individuals with dysautonomia. These instruments assess the prevalence of dyspnea, general quality of life, and dyspnea-related functional limitations.</p><p><strong>Results: </strong>Of the 617 participants enrolled in this study, 414 individuals without comorbid conditions causing dyspnea were included in the primary analysis. The PROMIS^® Dyspnea Characteristics v1.0 and PROMIS^® Dyspnea Functional Limitations 10a instruments demonstrated good to excellent internal consistency reliability (Cronbach's alpha = 0.896-0.909; McDonald's omega total = 0.911-0.912). The PROMIS^® Global Health v1.2 instrument demonstrated good overall internal consistency (Cronbach's alpha = 0.846, McDonald's omega total = 0.852), although reliability varied among the Global Physical Health and Global Mental Health summary scores (Cronbach's alpha = 0.640-0.759; McDonald's omega total = 0.664-0.767). Confirmatory factor analysis supported a unidimensional structure for both the PROMIS^® Dyspnea Characteristics v1.0 and Dyspnea Functional Limitations 10a instruments and a two-factor structure (Global Physical Health and Global Mental Health) for the Global Health v1.2 instrument. The indices demonstrated a good to excellent model fit (Comparative Fit Index = 0.983-1.00). Analyses demonstrated strong concurrent criterion-related validity for the PROMIS^® Dyspnea Functional Limitations 10a instrument (r = 0.59063) and weak-to-moderate concurrent validity for the Global Health v1.2 instrument (r = -0.17763 to -0.35034).</p><p><strong>Conclusion: </strong>These findings support the use of the PROMIS^® Dyspnea Functional Limitations 10a and Global Health v1.2 instruments in clinical and research settings to assess symptom burden, functional limitations, and quality of life in adults with dysautonomia.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-07-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13461994/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148406314","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":"Selection of patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) for long-term follow up of patients diagnosed with lung or rectal cancer.","authors":"Gina Linmans, Svin Deneckere, Charlotte Lens, Esther van Poel, Cindy De Gendt, Walter Sermeus, Dirk De Ridder","doi":"10.1186/s41687-026-01133-x","DOIUrl":"10.1186/s41687-026-01133-x","url":null,"abstract":"<p><strong>Background: </strong>Despite their recognized value, the heterogeneous use of PROMs and PREMs prevents standardized data collection across hospitals, limiting their impact on both individual patient care and broader healthcare optimization. This study aims to identify and establish a standardized set of PROMs and PREMs for lung and rectal cancer to support uniform data collection and follow-up.</p><p><strong>Methodology: </strong>This multicenter study involved 10 Flemish hospitals focusing on lung and rectal cancer and applied a nine-phase methodology: (1) literature-based identification of PROMs and PREMs, (2) inventory of PROMs and PREMs currently used and proposed by the participating hospitals, (3) systematic assessment of PROM and PREM characteristics, (4) preliminary selection by the research team, (5) a Modified Delphi study with clinical experts, (6) an interview with methodologists, (7) patient focus groups, (8) a consensus meeting with clinical experts, and (9) finalization by the research group. A total of 13 lung cancer experts and 13 rectal cancer experts participated in the modified Delphi study. In addition, interviews were conducted with two methodologists, and five lung cancer patients and five rectal cancer patients, including both current and former patients, took part in the focus groups.</p><p><strong>Results: </strong>Consensus-based standardized sets of PROMs for lung and rectal cancer were selected. The final PROM sets consisted of the EQ-5D-5L (generic), EORTC QLQ-C30 and adapted PRO-CTCAE (cancer-specific), EORTC QLQ-LC29 (lung cancer-specific), and the EORTC QLQ-CR29, EORTC QLQ-LMC21 (1 item) and LARS (rectal cancer-specific), and an adapted version of the SF-HLQ for employment-related outcomes in both cancer populations. No PREM met the selection criteria.</p><p><strong>Conclusion: </strong>Based on a structured multi-phase approach integrating quantitative and qualitative methods with input from both patients and clinical experts, standardized PROM sets were selected for lung and rectal cancer. A specific PREM needs to be developed.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-07-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13633215/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148406344","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":"Psychometric properties of the 11-item Trust in the Medical Profession scale (TIMP) Malay version.","authors":"Asrul Amirullah, Noorazrul Yahya, Hanani Abdul Manan","doi":"10.1186/s41687-026-01139-5","DOIUrl":"10.1186/s41687-026-01139-5","url":null,"abstract":"<p><strong>Background: </strong>Trust in the medical profession is important for patient engagement, treatment adherence, and effective healthcare relationships; thus, a culturally appropriate patient-reported instrument for measuring this construct in Malaysia is needed. This study aimed to translate and culturally adapt the 11-item Trust in the Medical Profession scale (TIMP) into Malay and evaluate its psychometric properties in a Malaysian sample.</p><p><strong>Methods: </strong>A cross-sectional psychometric study was conducted among 376 Malaysian adults with prior COVID-19 care experience. Content validity was evaluated by a six-expert panel. Reliability was assessed using Cronbach's alpha and McDonald's omega. Structural validity was examined using exploratory factor analysis (EFA) and confirmatory factor analysis (CFA). Convergent validity was evaluated through correlations with related constructs, namely the Skala Kepuasan Interaksi Perubatan (SKIP), the Malay Patient Measure of Safety-10 (M-PMOS-10), and the Malay version of the Multidimensional Scale of Perceived Social Support (MSPSS-M).</p><p><strong>Results: </strong>The mean TIMP score was 3.02 (SD = 0.94) on a 5-point scale. Content validity was strong (I-CVI = 0.83-1.00; S-CVI/Ave = 0.97; mean κ = 0.97). Reliability was excellent (α = 0.94, 95% CI [0.93, 0.95]; ω = 0.94, 95% CI [0.93, 0.95]). EFA supported one factor (KMO = 0.963; Bartlett's χ²(55) = 2611.91, p < .001; first eigenvalue = 6.84, 62.1% variance) with loadings from 0.75 to 0.80. The one-factor CFA fit the data well (χ²(44) = 73.52, p = .003; CFI = 0.989; TLI = 0.986; RMSEA = 0.042 [90% CI 0.024-0.059]; SRMR = 0.023), with CR = 0.944 and AVE = 0.585. Convergent validity was supported by positive correlations with SKIP (r = .62, p < .001), M-PMOS-10 (r = .68, p < .001), and MSPSS-M (r = .16, p = .002).</p><p><strong>Conclusions: </strong>The Malay TIMP demonstrated strong psychometric properties in this sample and provides initial evidence for assessing trust in the medical profession among Malay-speaking Malaysian adults. Further validation in broader community and clinical samples is warranted.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-07-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13633187/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148413051","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":"Measurement properties of Chinese-version assessment tools of self-efficacy in patients with rheumatoid arthritis: a COSMIN-based systematic review.","authors":"Linfei Ding, Qingli Jiang, Yan Zhang, Xiaoyu Li","doi":"10.1186/s41687-026-01135-9","DOIUrl":"10.1186/s41687-026-01135-9","url":null,"abstract":"&lt;p&gt;&lt;strong&gt;Purpose: &lt;/strong&gt;This study aimed to systematically evaluate the measurement properties and methodological quality of self-efficacy assessment tools for rheumatoid arthritis(RA) patients in China, to provide evidence-based recommendations for clinicians and researchers in selecting appropriate tools.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Methods: &lt;/strong&gt;A comprehensive literature search was conducted in the following databases: CNKI, VIP, Wanfang, SinoMed, PubMed, Embase, Web of Science, Scopus, and CINAHL, to identify studies assessing the measurement properties of Chinese versions of the assessment tools of self-efficacy in patients with RA. The search covered all publications up to April 2025. The reported measurement properties included content validity, structural validity, internal consistency, reliability, and hypotheses testing for construct validity. Studies were eligible if: (1) The study population included patients with RA; (2) was the development, cross-cultural adaptation or validation of a self-efficacy assessment tool for RA; (3) evaluated at least one measurement property of a self-efficacy assessment tool for RA.; (4) The study was published in a peer-reviewed journal; (5) The publication language was English or Chinese. Studies were excluded if: (1) The tool was designed to measure only a single dimension of self-efficacy (e.g., medication adherence, exercise self-efficacy); (2) Studies involving non-Chinese populations; (3) The study was a secondary research article (e.g., review, systematic review, conference abstract); (4) The full text of the article was not available. Two reviewers independently screened the literature and extracted data. The measurement properties and methodological quality of the included tools were assessed using the Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN), and final recommendations were formulated accordingly.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Results: &lt;/strong&gt;A total of seven studies were included, covering seven Chinese versions of the assessment tools of self-efficacy in patients with RA. Among them, the Chinese version of 8-item Arthritis Self-Efficacy Scale (C-ASES-8) demonstrated \"sufficient\" content validity, with moderate-quality evidence supporting \"sufficient\" internal consistency. It was categorized as \"A\" and is recommended for use. The Chinese version of Joint Protection Self-Efficacy Scale (C-JP-SES) (two-factor structure) showed high-quality evidence indicating insufficient structural validity and was categorized as \"C,\" therefore not recommended. The Chinese versions of JP-SES (single-factor structure), ASES, and Rheumatoid Arthritis Self-Efficacy Scale (RASE) did not meet the criteria for either \"A\" or \"C\" and were categorized as \"B,\" indicating they may be temporarily recommended pending further validation.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Conclusion: &lt;/strong&gt;The Chinese-version assessment tools of self-efficacy in patients with RA are diverse. Although the C-ASES-8 has met the recomm","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-07-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13627544/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148398730","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":"Patient Identification of the most important outcomes in a gastrointestinal behavioral health program.","authors":"Robert E Brady, Brooke A Duarte, Corey A Siegel, Jessica K Salwen-Deremer","doi":"10.1186/s41687-026-01125-x","DOIUrl":"10.1186/s41687-026-01125-x","url":null,"abstract":"<p><strong>Background: </strong>Brain-gut behavior therapies (BGBTs) are evidence-based treatments for patients with disorders of gut-brain interaction (DGBI) and inflammatory bowel disease (IBD). While BGBT clinical trials prioritize decreasing symptom severity and improving anxiety, depression, and quality of life, these outcomes are not designed based on patients' priorities. We aimed to determine the optimal patient-centered outcome measures to assess change following BGBT using a stakeholder-engaged qualitative process.</p><p><strong>Methods: </strong>We interviewed patients 1:1 with DGBI and IBD with and without BGBT experience. Interview data were analyzed using rapid qualitative analysis. Subsequent focus groups reviewed the qualitative findings to verify accuracy, identify high-priority and missing constructs, and create clinical use recommendations. Measure recommendations were developed based on patients' perspectives and the extant literature.</p><p><strong>Results: </strong>Qualitative interviews (N = 20) yielded five domains: lived experience of disease, how to cope with illness, perceived value of behavioral intervention, outcomes and measurement, and behavioral intervention effects. Focus group participants (N = 14) broadly confirmed that the qualitative themes represented their experience with BGBTs and prioritized confidence in symptom management, social connectedness, lived experience with disease, and mental/behavioral health symptoms. They highlighted the importance of brevity, semi-regular re-evaluation, and access to results. Resultant measures included: Brief Illness Perception Questionnaire, PROMIS Self-Efficacy for Managing Chronic Conditions-Symptoms, UCLA Loneliness Scale, IBD DISK (adapted), and PHQ-2/GAD-2.</p><p><strong>Conclusions: </strong>The identified treatment targets differed from those prioritized in clinical trials. However, DGBI and IBD literature suggests that many of the identified constructs supersede traditional outcomes such as anxiety and depression. These results can guide integration of patient-reported outcome measures into gastropsychology programs and highlight the value of involving patients in program development.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-07-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13627641/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148391887","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}