Quality of Life Research最新文献

{"title":"Quality of life item banks for type 2 diabetes: psychometric evaluation and computerized adaptive testing simulations.","authors":"Eva K Fenwick, Ryan E K Man, Aricia X Y Ho, Ester P X Lee, E Shyong Tai, Ngiap Chuan Tan, Sue-Anne E S Toh, Tat Yean Tham, Chin Meng Khoo, Yong Mong Bee, Ecosse L Lamoureux","doi":"10.1007/s11136-026-04387-6","DOIUrl":"10.1007/s11136-026-04387-6","url":null,"abstract":"<p><strong>Purpose: </strong>We evaluated the psychometric properties of type 2 diabetes (T2DM) quality of life (QoL) item banks (IBs), and assessed their efficiency for computerized adaptive testing (CAT) using simulations.</p><p><strong>Methods: </strong>In this cross-sectional, clinical study, patients with T2DM answered 256 items across seven IBs: Activity Limitation (AL); Symptoms (SY); Diet (DT); Emotional (EM); Concerns (CN); DM Management (DMn); and Work (WK), referred to collectively as \"DiabCAT\". The psychometric properties of each IB (e.g. measurement precision; item \"fit\"; differential item functioning) were assessed using Rasch analysis. The mean number of items required for 'high' (0.3 standard error [SE]) and 'moderate' (0.387 SE) precision was determined using CAT simulations.</p><p><strong>Results: </strong>The 298 patients (57.4% male) had a mean (SD) age of 60.7 (10.8) years and DM duration of 15.3 (9.7) years. Overall, SY, DT, WK, EM, and CN displayed acceptable measurement performance after deleting 15 problematic items, with some limitations in targeting at higher levels of the latent trait, particularly for EM. The DMn domain was multidimensional and subsequently split into two unidimensional domains (DMn-Convenience [DMn-CV] and DMn-Concerns [DMn-CN]). Owing to unresolvable psychometric issues, AL was dropped. In CAT simulations, the mean number of items required per IB ranged from 9 (CN, DMn-CV, WK) to 11 (EM) for moderate, and 14 (DT) to 18 (EM) for high measurement precision.</p><p><strong>Conclusions: </strong>Comprising 213 items within seven psychometrically valid and efficient IBs, DiabCAT enables researchers and clinicians to comprehensively assess the QoL impact of T2DM and its management with relatively low administration burden. Further assessment of its reliability, validity and responsiveness is warranted.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":"35 10","pages":""},"PeriodicalIF":3.4,"publicationDate":"2026-09-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13593726/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149018018","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Validation for use in Colombia of the EORTC QLQ-THY34 questionnaire to measure quality of life in patients with thyroid cancer.","authors":"Laura Johanna Piña-Jaramillo, Diana Isabel Cuéllar-Rivera, Andrés Arturo Cuéllar-Cuéllar, Ricardo Sánchez-Pedraza","doi":"10.1007/s11136-026-04392-9","DOIUrl":"10.1007/s11136-026-04392-9","url":null,"abstract":"<p><strong>Purpose: </strong>Although survival after thyroid cancer is favorable, many patients experience persistent symptoms and concerns that affect health-related quality of life (HRQoL). This study evaluated the measurement properties of the Colombian Spanish EORTC QLQ-THY34 in patients with thyroid cancer.</p><p><strong>Methods: </strong>500 adults treated at a national oncology referral center were included. Psychometric validation was conducted using Classical Test Theory (CTT) and Rasch analysis. CTT evaluated internal consistency; structural, convergent, and divergent validity; test-retest reliability, and responsiveness. Rasch analysis examined dimensionality, item and person fit, reliability, differential item functioning (DIF), and the relationship between item difficulty and patient responses using the person-item map.</p><p><strong>Results: </strong>The empirical four-domain model: (Symptoms and Impact, Cancer-related Concerns, Oropharyngeal Alterations, and Lack of Social Support), fitted substantially better than the original 17-scale model, although RMSEA and SRMR remained above conventional thresholds. Internal consistency was adequate across domains, and Test-retest reliability was good for three domains and moderate in one. Responsiveness analyses showed statistically significant changes over time in the Symptoms and Impact and Cancer-Related Concerns domains. Rasch analysis indicated acceptable fit for most items, although some exhibited DIF, and suggested usefulness in patients with greater clinical complexity.</p><p><strong>Conclusion: </strong>The Colombian Spanish EORTC QLQ-THY34 showed generally adequate measurement properties, supporting its use for assessing health-related quality of life in patients with thyroid cancer in Colombia. The empirically derived four-domain structure should be considered preliminary and requires replication in independent and more clinically diverse samples; meanwhile, the original EORTC scoring system should remain the standard for cross-study comparisons.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":"35 10","pages":""},"PeriodicalIF":3.4,"publicationDate":"2026-09-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13593722/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149017958","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Multilevel factors associated with nonresponse to patient-reported outcome measures in routine radiation oncology care.","authors":"Jason B Liu, Yu-Jen Chen, Maria O Edelen, Andrea L Pusic, Neil E Martin, Chengbo Zeng","doi":"10.1007/s11136-026-04383-w","DOIUrl":"10.1007/s11136-026-04383-w","url":null,"abstract":"<p><strong>Purpose: </strong>Nonresponse to routinely collected patient-reported outcome measures (PROMs) threatens the representativeness of aggregated data. We characterized patient-, provider-, and clinic-level factors associated with PROMIS Global-10 nonresponse in routine radiation oncology care.</p><p><strong>Methods: </strong>In this retrospective cohort study, all adults seen at five Mass General Brigham radiation oncology clinics over one year were included. The primary outcome was patient-level nonresponse, defined as never completing the portal-administered Global-10 versus completing it at least once. Using iterative mixed-effects logistic regression, we modeled patient-, provider-, and clinic-level factors.</p><p><strong>Results: </strong>Among 12,214 patients, 71 providers, and five clinics, patient- and appointment-level response rates were 35.4% and 31.7%, with patient-level response ranging nearly fivefold across clinics (12.8% to 66.2%). In Model 1, male sex, lower education, not working, and recent surgery had higher odds of nonresponse, and longer time since diagnosis lower odds. After provider- and clinic-level factors were added, patient sex, education, and employment became nonsignificant, whereas recent surgery (adjusted odds ratio [aOR] 1.97) and longer time since diagnosis (aOR 0.46 for > 12 months) persisted. A provider's historical collection rate was protective but attenuated at the clinic level. There, a later program launch (aOR 0.29) and higher historical collection rate (aOR 0.79) correlated with lower nonresponse, whereas academic versus community setting did not.</p><p><strong>Conclusions: </strong>Nonresponse to routinely collected PROMs is a multilevel phenomenon driven substantially by clinic-level implementation factors, not patient characteristics alone. Because response rate is only a proxy for representativeness, PROMs programs and PRO-based performance measures should prioritize representative collection over volume.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":"35 10","pages":""},"PeriodicalIF":3.4,"publicationDate":"2026-09-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13585823/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148991099","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A head-to-head comparison of health utilities and measurement properties of the EQ-5D-5L and SF-6Dv2 among people living with HIV in China.","authors":"Li Cheng, Qing He, Xiaoyu Fang, Qiang Sun, Jia Yin","doi":"10.1007/s11136-026-04384-9","DOIUrl":"10.1007/s11136-026-04384-9","url":null,"abstract":"<p><strong>Purpose: </strong>To compare health utilities and measurement properties of the EQ-5D-5L and SF-6Dv2 among people living with HIV (PLHIV) in China, and to identify factors associated with utility values.</p><p><strong>Methods: </strong>A multicenter cross-sectional survey was conducted among PLHIV in Shandong, Guangdong, and Sichuan provinces. Utilities were calculated using Chinese value sets. Ceiling/floor effects were evaluated. Convergent validity and agreement were assessed using Spearman's rank correlation, intraclass correlation coefficients (ICC), and Bland-Altman (B-A) plots. Known-groups validity and discriminative performance were evaluated using effect sizes and relative efficiency. Tobit models identified factors associated with utilities.</p><p><strong>Results: </strong>Among 705 respondents, mean (SD) utilities were 0.93 (0.15) for EQ-5D-5L and 0.80 (0.17) for SF-6Dv2. Ceiling effects were higher for EQ-5D-5L than SF-6Dv2 (48.2 vs. 14.3%). The instruments showed good convergent validity (r = 0.719) and agreement (ICC = 0.729), but the B-A limits of agreement spanned 0.48, exceeding the instrument-defined minimally important difference (MID) of 0.06. Both instruments discriminated across known groups. The EQ-5D-5L had higher relative efficiency for comorbid chronic disease, CD4 + T-cell counts, and prior HIV self-testing experience, whereas the SF-6Dv2 had higher relative efficiency for duration of ART, economic burden, and self-rated health. Comorbid chronic disease, no prior HIV self-testing experience, and heavy economic burden were associated with lower utility values.</p><p><strong>Conclusions: </strong>Both instruments showed acceptable measurement properties among Chinese PLHIV, but systematic utility differences suggest they should not be used interchangeably. These findings support objective-driven instrument selection and may inform cost-utility analyses and utility-improvement targets.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":"35 10","pages":""},"PeriodicalIF":3.4,"publicationDate":"2026-09-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148920884","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Agreement between directly reported and recalled EQ-5D-5 L outcomes after an acute health event: a prospective cohort study.","authors":"Afewerki Gebremeskel Tsadik, Meles Tekie Gidey, Yainu Welegerima Welekidane, Elias Fitsum Yigzaw, Abrham Gebreziabher Welie","doi":"10.1007/s11136-026-04388-5","DOIUrl":"10.1007/s11136-026-04388-5","url":null,"abstract":"&lt;p&gt;&lt;strong&gt;Purpose: &lt;/strong&gt;To assess the agreement between directly reported and retrospectively recalled health-related quality of life (HRQoL) in patients with diabetic ketoacidosis (DKA), based on reports from both patients and their proxies using the EQ-5D-5 L.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Methods: &lt;/strong&gt;A prospective cohort of 200 patients with DKA and 200 corresponding proxies (a family member or caregiver who lived with or regularly cared for the patient and accompanied them during hospitalization) was enrolled on a staggered, consecutive basis (not simultaneously) as eligible patients presented over the 4-month enrolment period, from April to July 2025. HRQoL was assessed using the Amharic EQ-5D-5 L, self-completed by participants once clinically stabilized (approximately 4-7 days after DKA onset, and always before hospital discharge) (T1) and participants were again given a further set of self-administered questionnaires and instructed to complete them independently at home at one month (T2) and two months (T3) after the acute event, with telephone reminders to prompt timely completion of the T2 and T3 questionnaires and subsequent retrieval of completed forms by the study team. Of the 400 enrolled pairs, 388 individuals (194 patient-proxy pairs) completed assessments at all-time points and were included in the final analysis. Agreement between directly reported and recalled EQ-5D utility and EQ-VAS scores at T1-T2, T1-T3, and T2-T3 was evaluated using paired t-tests, intraclass correlation coefficients (ICCs), and Bland-Altman analyses.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Results: &lt;/strong&gt;Patients were on average 44.5 years old (SD 14.2), 58.8% male, and predominantly urban residents (73.7%), with moderate DKA severity in about half of the sample (49.5%). Recalled EQ-5D utility and EQ-VAS scores were generally lower than directly reported values for baseline assessments in both patients and proxies, with larger differences at the longer recall interval (T3) than at the shorter interval (T2). Differences between directly reported and recalled scores at later follow-up were smaller. Despite statistically significant mean differences, ICCs indicated good agreement (ICC &gt; 0.75) for both EQ-5D utility and EQ-VAS across patients and proxies. Bland-Altman analyses supported acceptable agreement. Agreement was weaker among patients with mild or recurrent DKA and stronger among those with tertiary education. Dimension-level agreement, assessed using Wilcoxon signed-rank tests and Cohen's kappa, was lowest for anxiety/depression and pain/discomfort among EQ-5D dimensions. EQ-VAS demonstrated slightly stronger agreement than EQ-5D utility scores.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Conclusion: &lt;/strong&gt;Recalled EQ-5D-5 L scores showed good relative (rank-order) agreement with directly reported scores, but were systematically lower by margins that reached or exceeded commonly used minimal important difference thresholds, particularly over longer recall intervals. Recalled data may therefore support c","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":"35 10","pages":""},"PeriodicalIF":3.4,"publicationDate":"2026-09-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148930933","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Instruments for measuring body image in breast cancer patients: a systematic review of measurement properties.","authors":"Yuanyuan Pang, Qifan Ding, Ru Feng, Zexuan Fan, Qian Yue, Siqi Wei","doi":"10.1007/s11136-026-04374-x","DOIUrl":"10.1007/s11136-026-04374-x","url":null,"abstract":"<p><strong>Purpose: </strong>To evaluate the psychometric properties of PROMs for measuring body image in breast cancer patients.</p><p><strong>Methods: </strong>In December 2024, a psychometric systematic review was performed in the nine databases. The COSMIN checklist was employed to evaluate the methodological quality and psychometric properties of the included body image measures. The level of evidence was assessed using the GRADE framework, and final recommendations were formulated for the scale.</p><p><strong>Results: </strong>Thirty-eight articles evaluating fifteen PROMs were included in this review. Structural validity, internal consistency, and hypothesis testing had been most frequently evaluated. Measurement error had not been assessed for all PROMs. Twelve instruments show potential application value but require further research. The BAS-BC, PSPP, and ASI-R are not recommended for use, as these instruments do not meet the strict COSMIN thresholds for full recommendation.</p><p><strong>Conclusion: </strong>The BIS can be recommended as a temporary screening tool for assessing body image outcome in clinical practice. The BIRS can be tentatively advised for measuring specific postoperative body image changes. However, further comprehensive studies are required to validate the psychometric properties of existing PROMs.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":"35 10","pages":""},"PeriodicalIF":3.4,"publicationDate":"2026-09-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148901006","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Development of the Japanese version of the Manchester short assessment of quality of life (MANSA) among people with self-reported severe mental illness.","authors":"Masako Kageyama, Kayo Ichihashi, Momoko Kusaka, Keiko Yokoyama","doi":"10.1007/s11136-026-04381-y","DOIUrl":"10.1007/s11136-026-04381-y","url":null,"abstract":"<p><strong>Purpose: </strong>The Manchester Short Assessment of Quality of Life (MANSA) is a quality-of-life (QOL) instrument developed for people with mental illness. This study aimed to develop a Japanese version of the MANSA for people with severe mental illness (SMI) and examine associations between individual MANSA domains and psychiatric diagnosis.</p><p><strong>Methods: </strong>The MANSA includes 12 self-rated subjective QOL items; the overall score is their mean on a 1-7 scale. We prepared a Japanese translation and tested validity and reliability using cross-sectional survey data from 237 adults with SMI in Japan. Concurrent validity was tested in 38 respondents who also completed the WHOQOL26. The sample was randomly split for exploratory factor analysis (EFA) and confirmatory factor analysis (CFA) in separate subsamples. Analyses included score distributions, validity, internal consistency, and domain-level ordinal logistic regression.</p><p><strong>Results: </strong>The MANSA items showed the expected associations with the relevant scales and items. Although a two-factor structure was supported by EFA, the CFA fit indices were CFI = 0.86, TLI = 0.82, and RMSEA = 0.12. In the one-factor EFA solution, all factor loadings exceeded 0.40. Cronbach's alpha for all 12 items was 0.877. The schizophrenia-spectrum group had higher scores in several domains than the bipolar- and depressive-disorder groups, and symptom stability was associated with higher scores across all domains.</p><p><strong>Conclusions: </strong>The Japanese version of MANSA showed acceptable concurrent validity and internal consistency. The proposed two-factor structure was not supported; total-score use remained reasonable, but further validation is needed. Diagnosis and symptom stability were associated with domain-specific QOL.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":"35 10","pages":""},"PeriodicalIF":3.4,"publicationDate":"2026-09-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13547167/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148901010","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Functional outcomes following psychotherapy for elevated suicide risk: Secondary analysis of a randomized controlled trial.","authors":"Craig J Bryan, Ennio Ammendola, C Rosie Bauder, Samantha E Daruwala, Jaryd Hiser, Lauren Khazem, Jarrod Hay, AnnaBelle Bryan, Justin C Baker","doi":"10.1007/s11136-026-04382-x","DOIUrl":"10.1007/s11136-026-04382-x","url":null,"abstract":"<p><strong>Purpose: </strong>Suicidal thoughts and behaviors are associated with severe impairment in daily functioning and reduced quality of life, yet clinical trials of suicide-focused psychotherapies have focused almost exclusively on suicidal ideation and behavior as outcomes. This study examined change in patient-reported functional outcomes (pain interference, physical functioning, and social functioning) during two evidence-based psychotherapy treatments for elevated suicide risk.</p><p><strong>Methods: </strong>This is a secondary analysis of a two-arm parallel randomized controlled trial comparing Brief Cognitive Behavioral Therapy (BCBT) and Present-Centered Therapy (PCT) delivered to 85 adults with active suicidal ideation or a recent suicide attempt. Physical functioning, pain interference, and ability to participate in social roles and activities were assessed using the 43-item Patient Reported Outcomes Measurement Information System (PROMIS-43) at baseline and at 3, 6, 9, and 12 months. Generalized estimating equations were used to estimate change over time and between-group differences. Clinically meaningful change was defined as ≥ 5-point PROMIS-43 T-score change [44].</p><p><strong>Results: </strong>At baseline, functional impairment was prevalent: 50.0%, 65.9%, and 81.0% of patients reported at least mild impairment in physical functioning, pain interference, and social functioning, respectively. Mean scores improved significantly over time across all three domains (all p's ≤ 0.028), with the largest gains occurring in the first three months. Trajectories did not differ significantly between treatment groups. By the end of follow-up, more BCBT than PCT patients had returned to within-normal-limits functioning for pain interference (58.9% vs. 42.5%) and social functioning (58.4% vs. 45.4%). Rates of meaningful improvement substantially exceeded rates of meaningful worsening for pain interference and social functioning in both treatments.</p><p><strong>Conclusions: </strong>Suicide-focused psychotherapy is associated with clinically meaningful improvements in pain interference and social functioning, with more modest gains in physical functioning. These findings support expanding outcome assessment in suicidal populations beyond ideation and symptoms to include functional domains central to quality of life.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":"35 10","pages":""},"PeriodicalIF":3.4,"publicationDate":"2026-09-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148897732","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Capturing quality of life in pouch anal and vaginal fistula: development of PAVF-QoL-14, a patient-reported outcome measure.","authors":"Lillian Reza, Laith Alrubaiy, Lara Bapir, Nusrat Iqbal, Charlene Sackitey, Easan Anand, Sally Hughes, Mina Babbar, Rali Marinova, Petya Marinova, Pearl Avery, Phillip Lung, Ailsa Hart, Sue Clark, Phil Tozer","doi":"10.1007/s11136-026-04380-z","DOIUrl":"10.1007/s11136-026-04380-z","url":null,"abstract":"<p><strong>Introduction: </strong>Perianal pouch fistula can significantly affect quality of life, yet no disease-specific patient reported outcome measure (PROM) exists. We have developed and validated a 14-item PROM-the Pouch Anal and Vaginal Fistula Quality of Life scale (PAVF-QoL-14).</p><p><strong>Methods: </strong>COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) guidance for PROM development was used to develop and validate PAVF-QoL-14. A systematic literature review and semi-structured patient interviews (n = 14) identified key domains. Cognitive interviews and item-level content validity index with experts refined the draft questionnaire. Psychometric evaluation included principal component analysis (PCA), internal consistency testing, and construct validity assessment against Hospital Anxiety and Depression Scale (HADS) and Short-Form 12 (SF-12). Test-retest analysis was performed on 76 patients.</p><p><strong>Results: </strong>An initial 34-item draft scale was generated and refined through cognitive interviews (n = 10) and psychometric testing (n = 76). Flesch readability score was 63%. Kaiser-Meyer-Olkin test confirmed sampling adequacy (KMO = 0.905), and correlations between items were found significant using Bartlett's test of sphericity (p < 0.001). Four domains (symptoms, discharge, faecal incontinence, and future concerns) were extracted, explaining 63.7% of the total variance. Following stepwise regression, a 14-item short-form was developed, demonstrating excellent internal consistency (Cronbach's α = 0.920). Responsiveness was good (effect size 0.77), and test-retest reliability demonstrated excellent stability (ICC = 0.924). Construct validity was supported by moderate-to-strong correlations with HADS (r = 0.589, p < 0.001) and SF-12 (r = 0.525, p < 0.001). The final questionnaire generates scores ranging from 14 to 70, with higher scores indicating greater fistula-related impairment in quality of life.</p><p><strong>Conclusion: </strong>PAVF-QoL-14 provides a concise, validated, and disease-specific measure of quality of life for pouch-related fistula and shows strong potential for use in clinical practice and clinical trials.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":"35 10","pages":""},"PeriodicalIF":3.4,"publicationDate":"2026-09-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13541871/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148888298","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Responsiveness and minimal important change of the Dutch Adult Strabismus-20 Questionnaire (Dutch-AS-20).","authors":"Fenna Burggraaf, Hinke Marijke Jellema, Martha J Tjon-Fo-Sang, Ruth M A van Nispen, Ellen B M Elsman","doi":"10.1007/s11136-026-04348-z","DOIUrl":"10.1007/s11136-026-04348-z","url":null,"abstract":"<p><strong>Purpose: </strong>The Dutch Adult Strabismus-20 questionnaire (Dutch-AS-20) is a patient-reported outcome measure (PROM) developed to assess the strabismus-specific quality of life (QoL) in adult patients with strabismus in the Netherlands. This 18-item questionnaire comprises a psychosocial and visual function subscale. The aim of this prospective, multicenter, longitudinal study was to evaluate the responsiveness and determine the minimal important change (MIC) of the Dutch-AS-20 in patients undergoing strabismus surgery.</p><p><strong>Methods: </strong>Adult patients scheduled for strabismus surgery were enrolled. The Dutch-AS-20, EQ-5D-5L, Amblyopia and Strabismus Questionnaire (A&SQ), Diplopia Questionnaire (DQ) and two global rating of change (GRC) questions were administered pre- and/or postoperatively. We used a construct approach to assess the responsiveness, testing eight pre-specified hypotheses. We determined the MIC using adjusted anchor-based predictive modelling.</p><p><strong>Results: </strong>A total of 136 patients completed the questionnaires at baseline. All pre-specified hypotheses were met, indicating sufficient responsiveness of both subscales of the Dutch-AS-20. We estimated a MIC of 3.1 T-score points for the psychosocial subscale. We could not estimate the MIC for the visual function subscale due to a low correlation with the GRC question.</p><p><strong>Conclusion: </strong>Both subscales of the Dutch-AS-20 are sufficiently responsive to change in strabismus-specific QoL following strabismus surgery. These findings are an important step towards the use of the Dutch AS-20 in both research and clinical practice. Future research is needed to determine a more precise MIC and individual-level statistics for both subscales, in order to improve the interpretability of change scores for both clinical and research purposes.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":"35 10","pages":""},"PeriodicalIF":3.4,"publicationDate":"2026-09-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13538231/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148881379","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}