Quality of Life Research最新文献

{"title":"Aphasia-specific or generic outcomes? a comparison of two health-related quality of life instruments for economic evaluations of aphasia treatments.","authors":"Sally Zingelman, Sarah J Wallace, Joosup Kim, Sam Harvey, Miranda L Rose, John E Pierce, Kathleen L Bagot, Dominique A Cadilhac","doi":"10.1007/s11136-025-04040-8","DOIUrl":"https://doi.org/10.1007/s11136-025-04040-8","url":null,"abstract":"<p><strong>Purpose: </strong>Economic evaluations based on health-related quality of life (HRQOL) inform healthcare decisions. The generic EuroQol 5-Dimensions Health Questionnaire, 3-Level (EQ-5D-3L) permits conversion to utility values required for economic evaluations but is not validated for people with aphasia. The aphasia-specific Stroke and Aphasia Quality of Life Scale-39 g (SAQOL-39g) measures HRQOL, however, cannot be used to generate utility values. This study aimed to compare the performance of these two instruments.</p><p><strong>Methods: </strong>HRQOL was rated at baseline and 12 weeks in participants of the Constraint Induced or Multi-Modal Personalised Aphasia Rehabilitation (COMPARE) randomised controlled trial. We assessed: (1) distribution of self-rated HRQOL scores, (2) convergent validity between EQ-5D-3L (domains; utility values; visual analogue scale) and SAQOL-39g (domain scores; total mean scores) using Spearman's correlations, (3) Construct validity through exploratory factor analysis, and (4) discriminative ability of converted EQ-5D-3L utilities in measuring compromised HRQOL (SAQOL-39g scores ≤ 4).</p><p><strong>Results: </strong>Participants (n = 201 baseline, n = 190 12 weeks) completed both instruments (69% male, median age 63.6 years, median time since stroke 2.5 years). Ceiling effects were high for the EQ-5D-3L at baseline (45-79%) versus the SAQOL-39g (0-6%). Convergent validity between the SAQOL-39g communication domain and the EQ-5D-3L (r = 0.04-0.28) was weak at both time points. Factor analysis revealed distinct underlying constructs between instruments. EQ-5D-3L utility scores demonstrated reasonable performance (0.80 baseline; 0.78 12-weeks) in measuring poor HRQOL.</p><p><strong>Conclusion: </strong>Our findings suggest that EQ-5D-3L use in economic evaluations including people with aphasia requires caution. Alternative HRQOL instruments require evaluation to ensure fair prioritisation of aphasia treatments.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":2.7,"publicationDate":"2025-07-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144732918","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":"Psychometric properties of the ICECAP-SCM capability-wellbeing measure in specialist palliative care units in Austria.","authors":"Elisabeth Saly, Judit Simon, Karin Brenner, Bert Engelhardt, Gudrun Kreye, Rudolf Likar, Eva Katharina Masel, Veronika Mosich, Mario Molnar, Andrea Passini, Claudia Fischer","doi":"10.1007/s11136-025-04032-8","DOIUrl":"https://doi.org/10.1007/s11136-025-04032-8","url":null,"abstract":"","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-07-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144691293","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":"Quality of patient-reported outcome measures and treatment effects: a review of orthopaedic randomized trials.","authors":"Joel J Gagnier, Edith Otalike, Andrew D Firth","doi":"10.1007/s11136-025-04022-w","DOIUrl":"https://doi.org/10.1007/s11136-025-04022-w","url":null,"abstract":"<p><strong>Purpose: </strong>This study assessed how poor-quality patients reported outcome measures (PROMS) influence treatment effect estimates in randomized patients with anterior cruciate ligament (ACL) injury.</p><p><strong>Methods: </strong>We chose a representative sample of studies by searching top journals of orthopaedic surgery for randomized trials in patients after anterior cruciate ligament injury over the past 5-years. Studies were eligible if they reported at least one of the PROMs assessed in a previous review of their measurement properties. The risk of bias was assessed, and standardized treatment effects were calculated between groups for each PROM and time point. We used mixed-effects regression to predict treatment effect using psychometric summary score, risk of bias score, follow-up duration, sample size, proportion of female patients, and funding source as predictors, accounting for the random effect of the study.</p><p><strong>Results: </strong>Out of the 4038 studies screened, 38 RCTs that used 9 validated PROMs and reported 139 PROM scores were included. The mean risk of bias score was 7.1 (standard deviation [SD]: 1), and the mean psychometric score was 1.4 (SD = 2.5). While psychometric quality was not significantly associated with treatment effect variance in lower-quality PROMs, the study found that longer follow-up duration was associated with a less likely treatment effect favouring the experimental group.</p><p><strong>Conclusion: </strong>Poor quality patient-reported outcomes may demonstrate greater variance of treatment effects in randomized trials. More psychometric evidence, particularly of responsiveness, is needed to assess the effect of individual measurement properties on treatment effects. These findings should be considered hypothesis generating only and be followed up in additional related research.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-07-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144682961","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":"Microbiome impacts quality of life in patients with endometrial cancer and benign gynecological conditions.","authors":"Nina J Gautam, Nicole R Jimenez, Paweł Łaniewski, Haiyan Cui, Denise J Roe, Dana M Chase, Melissa M Herbst-Kralovetz","doi":"10.1007/s11136-025-04031-9","DOIUrl":"https://doi.org/10.1007/s11136-025-04031-9","url":null,"abstract":"<p><strong>Purpose: </strong>Patients with endometrial cancer (EC), a prevalent gynecologic cancer in the United States, and benign gynecological conditions such as fibroids and endometriosis, experience poor quality of life (QOL). Organisms in vaginal and rectal microbiomes have been previously linked to both adverse symptoms and gynecologic disease. Using gastrointestinal, mental, physical, and sexual health symptoms as a proxy for QOL, we explored QOL relationships with vaginal and rectal microbes between patients with EC and benign gynecological conditions.</p><p><strong>Methods: </strong>Patients undergoing hysterectomy for benign or oncological indications at a single center completed QOL surveys preoperatively. The operating surgeon collected vaginal and rectal swabs prior to surgery. Survey and microbiome data were analyzed separately and then correlated utilizing MicrobiomeAnalyst, analysis of compositions of microbiomes with bias correction (ANCOM-BC), and GraphPad Prism 10.2.3.</p><p><strong>Results: </strong>Sexual interest and Vaginal Assessment Scale (VAS) scores were higher in the benign group. Vaginal species richness was higher in the EC group. Vaginal Porphyromonas negatively correlated to sexual interest in all patients, while Dialister B positively correlated to sexual interest in the benign group. Patients with EC and worse vaginal atrophy had increased vaginal L. iners, despite adjustment for menopausal status. In the rectal microbiome, Gastranaerophilales positively correlated to good mental health and Verrucomicrobiales negatively correlated to vulvar symptoms.</p><p><strong>Conclusion: </strong>Identifying microbiome signatures that impact QOL in patients with EC and benign gynecological conditions increases understanding of how microbes may influence patient wellbeing. We offer preliminary findings for foundational knowledge for future opportunities on improvement of QOL through microbiome modulation.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-07-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144668220","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":"Identifying and developing culturally relevant EQ-5D-5L bolt-on items for Chinese population: qualitative phase of a mixed-methods study.","authors":"Jingzhi Fan, Zhuxin Mao, Xinyi Song, Fanni Rencz, Zhihao Yang, Nan Luo, Pei Wang","doi":"10.1007/s11136-025-04028-4","DOIUrl":"https://doi.org/10.1007/s11136-025-04028-4","url":null,"abstract":"<p><strong>Purpose: </strong>EQ-5D might not fully capture certain aspects of health-related quality of life (HRQoL) important to the Chinese population. The study aimed to identify and develop culturally relevant additional items (bolt-ons) for the EQ-5D-5L in China.</p><p><strong>Methods: </strong>This study represents the qualitative phase of a larger mixed-methods project. Based on existing systematic reviews and qualitative work, we developed seven candidate items (sleep, tiredness/lack of strength, appetite, climate adaptation, emotional control, social adaptation and social support), which were commonly used in Chinese HRQoL description and measurement, or reflected Chinese unique understanding of HRQoL. Eleven HRQoL or clinical experts, 15 healthy and 12 chronically ill individuals participated in semi-structured interviews to assess the relevance, comprehensiveness and comprehensibility of each item. Data were analyzed thematically.</p><p><strong>Results relevance: </strong>Sleep, tiredness/lack of strength, appetite, and social adaptation were mostly regarded as relevant to HRQoL. Most lay respondents acknowledged climate adaptation (x = 17) and emotional control (x = 18) were important, differing from expert opinions; social support was considered partially or not related to HRQoL by 20 respondents.</p><p><strong>Comprehensibility: </strong>Suggestions were made regarding dimension headings and addition of illustrative explanations/descriptions, leading to iterative refinements in the item wording.</p><p><strong>Comprehensiveness: </strong>No additional bolt-ons were proposed by more than two respondents.</p><p><strong>Conclusion: </strong>Sleep, tiredness/lack of strength, appetite, climate adaptation, emotional control, and social adaptation are potentially useful EQ-5D-5L both-ons for the Chinese population, but not social support. This study contributed to finalizing the bolt-on items and their wording that will be psychometrically tested in the next quantitative phase of the project.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-07-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144668219","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":"Self-reported quality of recovery after radical prostatectomy-a prospective cohort study.","authors":"Marlene Fischer, Josephine Küllmei, Linda Krause, Peipei Wei, Ursula Kahl, Elena Kainz, Caspar Mewes, Markus Graefen, Alexander Haese, Christian Zöllner, Lili Plümer","doi":"10.1007/s11136-025-04026-6","DOIUrl":"https://doi.org/10.1007/s11136-025-04026-6","url":null,"abstract":"<p><strong>Purpose: </strong>The Quality of Recovery-15 questionnaire (QoR-15) has been developed to assess patient-reported recovery 24 h after non-cardiac surgery. This prospective cohort study sought to analyze patient-reported recovery throughout day five after open radical retropubic prostatectomy (ORP) and robot-assisted radical retropubic prostatectomy (RARP).</p><p><strong>Methods: </strong>Between June 2022 and February 2023 adult patients, who were scheduled for elective radical prostatectomy, completed the German version of the QoR-15 (QoR-15GE) preoperatively to establish a baseline value. Between postoperative day one and day five, patients completed the QoR-15GE daily until the day of discharge.</p><p><strong>Results: </strong>A total of 523 patients completed the questionnaires. On postoperative day one QoR-15GE scores were significantly lower after RARP compared with ORP (ORP: 113 ± 22 vs. RARP: 107 ± 24; p = 0.006) with a higher decline in postoperative QoR-15GE scores in RARP compared with ORP patients (ORP: 27 ± 20 vs. RARP: 32 ± 23; p = 0.006). The multivariable analysis confirmed an influence of surgical technique (Estimate: 4.39; 95% CI [0.27; 8.50], p = 0.037) on postoperative quality of recovery after adjusting for clinically relevant variables. Irrespective of surgical technique, we observed a consistent increase in QoR-15GE scores with similar recovery scores on postoperative days three, four, and five.</p><p><strong>Conclusion: </strong>Patients who undergo RARP experience poorer postoperative recovery at postoperative days one and two compared to those undergoing ORP. However, recovery scores align from postoperative day three, indicating a similar level of patient-reported recovery before hospital discharge. These findings suggest that the QoR-15GE may be appropriate for serial assessments.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-07-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144660030","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":"Effect of caregiver burden on the quality of life of informal caregivers of people with cystic fibrosis in the United Kingdom: a cross-sectional study.","authors":"Sulayman Chowdhury, Patricia Cubi-Molla, David Mott","doi":"10.1007/s11136-025-04021-x","DOIUrl":"https://doi.org/10.1007/s11136-025-04021-x","url":null,"abstract":"<p><strong>Purpose: </strong>Informal carers of people with cystic fibrosis (PwCF) play a critical role in care provision, yet the impact of caregiving on their quality of life (QoL) remains underexplored. We aimed to assess the effect of caregiver burden on the quality of life of informal caregivers of people with cystic fibrosis in the UK.</p><p><strong>Methods: </strong>We conducted a cross-sectional online survey study administering a structured questionnaire with four validated measures (EQ-5D-5L, CarerQol-7D, ReQoL-10 and ASCOT-Carer). We used a carer-reported severity scale of cystic fibrosis to define severity groups. Statistical methods included descriptive analyses and ordinary least squares (OLS) regression to examine the association between carer utility and CF severity.</p><p><strong>Results: </strong>We find significant decrements in carers' quality of life due to their care burden, with the most affected dimensions being mental health (79% of carers reported some anxiety or depression) and social health (60% reported negative impacts on social contact). We find this QoL to be significantly worse for those caring for people with severe CF compared to those with mild CF (-0.03 to -0.1), for the majority of the measures used (EQ-5D, ReQoL-10 and CarerQol-7D).</p><p><strong>Conclusion: </strong>Our paper shows the negative impact on QoL for carers of PwCF, correlated with increasing CF severity due to their carer duties, and the negative impacts on their various health aspects, especially mental health. This indicates the importance of including carer QoL and additional measures to fully capture burden in health technology assessments (HTA) for CF.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-07-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144660021","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":"Quality-of-life measures in pharmacogenomic studies: a systematic review.","authors":"Shen Chi Ng, Nathan He, Patrick Fu, Senuri Mahavithana, Seoyoung Jang, Dina Abushanab, Zanfina Ademi","doi":"10.1007/s11136-025-04030-w","DOIUrl":"https://doi.org/10.1007/s11136-025-04030-w","url":null,"abstract":"<p><strong>Background: </strong>There are various quality of life (QoL) tools utilised in pharmacogenomic studies, but it remains unclear which tools are most frequently used. Our aim was to identify the types of QoL measures currently used in pharmacogenomic studies and address the existing evidence gap.</p><p><strong>Methods: </strong>A systematic review screened PubMed, Cochrane Library, Ovid, and Embase from inception through April 30, 2024. The search terms were \"Pharmacogenetics\" AND (\"quality of life\" OR \"PROMS\" OR \"PREMS\" OR \"health related quality of life\" OR \"'EuroQol\" OR \"utility\" OR \"generic\" OR \"time trade off\" OR \"standard gamble\" OR \"SF-6D\" OR \"EQ-5D\"). Our inclusion criteria were randomised clinical trials, cohort studies and cross-sectional studies that utilised generic and/or disease-specific QoL measures related to pharmacogenomics.</p><p><strong>Results: </strong>Twelve studies met the inclusion criteria, from which we identified the following tools: EORTC QLQ-C30 (n = 3), SF-36 (n = 3), SF-12 (n = 1), WHOQOL-BREF (n = 1), Q-LES-Q-SF (n = 1), FACT-Melanoma (n = 1), QLQ-C30 + QLQ BN20 (n = 1), QLQ-C30 + QLQ-CIPN20 (n = 1). The SF-36, SF-12, WHOQOL-BREF, and Q-LES-Q-SF are generic QoL questionnaires, while FACT-Melanoma, QLQ BN20, and QLQ-CIPN20 are disease specific. The EORTC QLQ-C20, although generic, is tailored for cancer patients. None of the included studies justified their choice of quality-of-life tool, nor was there consistency in how scores were reported in terms of overall and domain-specific outcomes.</p><p><strong>Conclusions: </strong>Pharmacogenomic studies employed diverse QoL instruments, hindering consistent and reliable reporting. Future studies should justify QoL tool selection and report both overall and domain-specific outcomes consistently to enable valid comparisons and inform decision-making.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-07-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144660022","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":"Tree-based latent variable model for assessing differential item functioning in patient-reported outcome measures: a simulation study.","authors":"Olayinka I Arimoro, Lisa M Lix, Scott B Patten, Rick Sawatzky, Veronique Sebille, Juxin Liu, Samuel Wiebe, Colin B Josephson, Tolulope T Sajobi","doi":"10.1007/s11136-025-04018-6","DOIUrl":"https://doi.org/10.1007/s11136-025-04018-6","url":null,"abstract":"<p><strong>Purpose: </strong>The validity of patient-reported outcome measures (PROMs) can be threatened by heterogeneity in how patients with the same underlying health status interpret and respond to questions about their health, a phenomenon known as differential item functioning (DIF). Although tree-based latent variable models, such as the partial credit model based on recursive partitioning (PCTree), are used to test for DIF, their performance has not been comprehensively investigated. We evaluated the statistical properties of PCTree to test for DIF in polytomous-scored PROM items.</p><p><strong>Methods: </strong>Computer simulations for a variety of data-analytic conditions were used to evaluate the performance of PCTree with and without Bonferroni adjustments. The performance of this model was assessed using Type I error and statistical power rates. The robustness of PCTree with respect to control of the familywise Type I error rate was evaluated using Bradley's liberal criterion; error rates within the interval of 2.5-7.5% for α = 5.0% indicate the method is robust.</p><p><strong>Results: </strong>Using Bradley's criterion, PCTree with a Bonferroni correction provided good control of familywise Type I error rate across all simulation conditions. The average statistical power rate of PCTree with Bonferroni correction was at least 80% when N <math><mo>≥</mo></math> 500. The average statistical power rate of the PCTree decreased as the number of explanatory variables not associated with DIF increased.</p><p><strong>Conclusions: </strong>PCTree is promising for evaluating DIF in potentially heterogeneous populations. We provide recommendations about data analytic conditions for using the model.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-07-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144668221","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":"Health-related quality of life measures as predictors for recurrent hospitalization and mortality among patients in heroin-assisted treatment.","authors":"Francesca Melis, Timo L Kvamme, Christian Tjagvad, Desiree Eide, Birgitte Thylstrup, Thomas Clausen, Morten Hesse","doi":"10.1007/s11136-025-04019-5","DOIUrl":"https://doi.org/10.1007/s11136-025-04019-5","url":null,"abstract":"","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-07-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144643254","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}