Quality of Life Research最新文献

{"title":"Content analysis of PROMIS physical function banks using the international classification of functioning, disability and health.","authors":"Michelle M Langer, Kathryn C Nesbit, Alex Dien, Theresa Jaramillo, Sang S Pak","doi":"10.1007/s11136-025-04071-1","DOIUrl":"10.1007/s11136-025-04071-1","url":null,"abstract":"","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":2.7,"publicationDate":"2025-09-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145138489","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":"The psychometric performance of the EQ-HWB-9 for measuring health and wellbeing in a general population sample from Australia and New Zealand.","authors":"Cate Bailey, Karen Trapani, Jonathan N Davies, Nicholas Van Dam, Julieta Galante, Tessa Peasgood","doi":"10.1007/s11136-025-04061-3","DOIUrl":"https://doi.org/10.1007/s11136-025-04061-3","url":null,"abstract":"<p><strong>Purpose: </strong>The EuroQol Health and Wellbeing Short (EQ-HWB-9) is a new, generic 9-item instrument, suitable for evaluating interventions in health and social-care settings for patients and caregivers. The instrument now requires validation across general and caregiver populations. Informal caregiving can be time-intensive and impact caregiver's physical and mental well-being. However, caregiver outcomes are often overlooked in healthcare decisions, which can lead to inefficient resource allocation. We aimed to examine the psychometric performance of the EQ-HWB-9 in a general population dataset, including caregivers of persons with disability/chronic illness.</p><p><strong>Methods: </strong>Using general population samples, stratified by age, gender, region, ancestry, and income for Australia and New Zealand, we investigated EQ-HWB-9 item distribution and known-group validity (t-tests; Cohen's d for effect size, with sub-group analysis by country, gender and age) across sum-scores and UK pilot preference-weighted scores. Item scores were compared across caregiver groups. Convergent validity was assessed between the EQ-HWB-9 and the Kessler-6 using Spearman's Rho.</p><p><strong>Results: </strong>The sample included 2542 participants, 2018 from Australia and 524 from New Zealand. Item distribution was similar to previous studies. Known-group validity results aligned to a priori hypotheses for caregiver, mental health, physical health and disability and sleep issues variables. Caregivers had significantly higher scores across each item than their counterparts. Convergent validity conformed to a priori expectations.</p><p><strong>Conclusion: </strong>The EQ-HWB-9 appears valid in this general population setting. This study helps to build the evidence for the use of the instrument across diverse settings. Australian- and New Zealand-specific value-sets would be a good future addition.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":2.7,"publicationDate":"2025-09-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145081454","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":"Association between pilonidal sinus disease and depression: a population-based cohort study.","authors":"Andreas Krieg, Ernst W Kolbe, Jan H Wieltsch, Sabine Leerhoff, Sarah Krieg, Karel Kostev","doi":"10.1007/s11136-025-04056-0","DOIUrl":"https://doi.org/10.1007/s11136-025-04056-0","url":null,"abstract":"","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":2.7,"publicationDate":"2025-09-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145081396","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":"Measuring health-related quality of life among school adolescents across Chinese Human Geography Regions: psychometric validation and norm development of the Mandarin Chinese self-reported KID-SCREEN-10 index.","authors":"Juan Li, Yuhang Zhu, Zhenliang Qiu, Ricky Jeffrey, Zhuang He, Di Wu, Ranran Li, Gaopei Zhu, Anne Kaman, Michael Erhart, Fuyan Shi, Suzhen Wang, Ulrike Ravens-Sieberer","doi":"10.1007/s11136-025-04039-1","DOIUrl":"https://doi.org/10.1007/s11136-025-04039-1","url":null,"abstract":"<p><strong>Purpose: </strong>The self-reported KIDSCREEN-10 index (KS-10) is widely used to assess health-related quality of life (HRQoL) in children and adolescents, but psychometric evidence for its Mandarin Chinese version remains limited. This study evaluates its psychometric properties, develops a population-based norm, and establishes a norm-referenced scoring algorithm.</p><p><strong>Methods: </strong>Data were collected from a two-wave cross-sectional survey across the Chinese Human Geography Regions (June 20-July 11, 2022). The sample included 3290 adolescents (ages 10-18; 51.5% female; 75.8% Han ethnic group) in their junior secondary education stage, obtained through convenience sampling (first wave) and multistage, stratified, cluster sampling (second wave). Psychometric properties were evaluated using the Rasch measurement method, and both a population-based norm and a norm-referenced scoring algorithm were developed and established.</p><p><strong>Results: </strong>Confirmatory factor analysis confirmed unidimensionality after two modifications. Rasch analysis demonstrated satisfactory psychometric performance, including an appropriate 5-category rating scale and strong goodness-of-fit. Minor local dependence was observed in a few item pairs, indicating slight unidimensionality violations. Both Rasch-generated reliability measures performed well. The person-item map showed acceptable matches and provided insights for further improvements. No substantial uniform differential item functioning was detected across 14 groups.</p><p><strong>Conclusion: </strong>The Mandarin Chinese self-reported KS-10 demonstrates satisfactory psychometric properties and provides a concise measure of adolescent HRQoL. It is a user-friendly instrument suitable for routine school monitoring, large-scale population surveys, and clinical applications. The population-based norm and norm-referenced scoring algorithm support its broader application and promotion, and offer new insights for interpreting HRQoL sum scores.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":2.7,"publicationDate":"2025-09-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145081443","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 mapping algorithms for gastric cancer: translating EORTC QLQ-C30 and QLQ-STO22 to EQ-5D-5L health utilities.","authors":"Huali Zhou, Xianxi Liu, Rong Bao, Liping Qiu, Yuhan Zhang, Qiong Gu, Qing Yang","doi":"10.1007/s11136-025-04063-1","DOIUrl":"https://doi.org/10.1007/s11136-025-04063-1","url":null,"abstract":"<p><strong>Purpose: </strong>This study aims to develop a mapping model from the EORTC QLQ-C30 and QLQ-STO22 to the EQ-5D-5L.</p><p><strong>Methods: </strong>Data were collected from 1059 gastric cancer patients in mainland China. The conceptual overlap between the EORTC QLQ-C30/QLQ-STO22 and EQ-5D-5L was assessed using the Pearson correlation coefficient. Four regression models were applied to estimate the algorithm: ordinary least squares (OLS), Tobit regression (Tobit), ordered probit regression (Oprobit), and beta mixture regression (Betamix). The independent variables in the models comprised the scale dimension scores of the EORTC QLQ-C30 and QLQ-STO22, squared terms of relevant dimension scores, age, and gender. The generalizability of the models was assessed using random sample validation and five-fold cross-validation. Model performance was evaluated using four primary metrics: root mean squared error (RMSE), mean absolute error (MAE), intraclass correlation coefficient (ICC), and absolute error (AE).</p><p><strong>Results: </strong>The mean health utility value of the EQ-5D-5L was 0.853 (SD = 0.240). The Oprobit3 demonstrated the best performance among all evaluated models, with RMSE = 0.197, MAE = 0.111, AE > 0.05 (%) = 56.84, AE > 0.1 (%) = 28.61, and ICC = 0.703. The predictors included all dimensions of the EORTC QLQ-C30 and QLQ-STO22 questionnaires, as well as age and gender.</p><p><strong>Conclusions: </strong>The developed algorithm enables researchers to estimate EQ-5D-5L health utilities based on EORTC QLQ-C30 and QLQ-STO22 scores. This approach facilitates cost-utility analyses in gastric cancer patients when EQ-5D-5L data are unavailable.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":2.7,"publicationDate":"2025-09-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145055659","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":"Conceptual framework for caregivers' quality of life and well-being supporting children with special health and medical needs in East Asia: a systematic review and narrative synthesis.","authors":"Emi Kamono, Motoko Tanaka, Honoka Tamori, Manami Takai, Kimiko Honda, Kunio Ogawa, Yoko Ujino, Mai Seino, Takeru Shiroiwa, Eri Hoshino","doi":"10.1007/s11136-025-04068-w","DOIUrl":"10.1007/s11136-025-04068-w","url":null,"abstract":"<p><strong>Purpose: </strong>There is a growing need to understand how cultural, relational, and contextual factors shape the quality of life (QOL) and well-being of caregivers of children with special health and medical needs in East Asia. Currently, no culturally grounded conceptual framework exists, and the unique demands of caring for developmentally dependent children present distinct challenges. This study aimed to identify key factors influencing caregiver QOL and well-being in this context.</p><p><strong>Methods: </strong>We conducted a systematic review of qualitative studies examining QOL among caregivers of children with chronic or life-threatening conditions in East Asia. The databases searched included MEDLINE, Cochrane, EMBASE, PsycINFO, CINAHL, and Ichushi (to June 2024). Studies were included if they addressed informal caregiving for children and focused on QOL or well-being in East Asian countries. Existing reviews were used to identify relevant studies, with an additional search conducted for Japan. We applied a framework synthesis approach guided by the EQ-HWB conceptual model. Risk of bias was assessed using the CASP Qualitative Studies Checklist.</p><p><strong>Results: </strong>Fourteen studies met the inclusion criteria. Ten core themes emerged, including emotions, activity, role, social and family relationships, functioning, financial strain, and parenting. Role, family ties, and parenting were especially prominent in East Asian contexts.</p><p><strong>Conclusions: </strong>Caregivers' experiences were deeply influenced by cultural factors such as collectivism, traditional norms, and stigma. These findings underscore the importance of culturally sensitive frameworks to assess caregiver QOL and to inform policies and interventions in East Asian health and social systems.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":2.7,"publicationDate":"2025-09-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145055721","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":"The relative importance of key life domains for people with disability: findings from a cross-sectional survey of NDIS participants in Australia.","authors":"Samia Badji, Dennis Petrie, Anthony Harris, Gang Chen","doi":"10.1007/s11136-025-04067-x","DOIUrl":"https://doi.org/10.1007/s11136-025-04067-x","url":null,"abstract":"<p><strong>Purpose: </strong>This study investigates the relative importance for people with disability of key life domains and whether this differs between young people (15-24) and adults (25 and over).</p><p><strong>Methods: </strong>A cross-sectional survey was conducted from 20 October to 31 December 2022 with National Disability Insurance Scheme (NDIS) participants asked to rank eight domains: Choice & control, Daily living, Relationships, Home, Health & wellbeing, Lifelong learning, Work, Social, Community and Civic participation. Based on a random utility framework, the data were analysed based on a ranked-ordered logit model to estimate preference shares for the order of preferences across domains. Analyses were conducted separately for the young and adult cohorts. Sensitivity analyses were conducted by relaxing the equal importance of NDIS domains in the ranking exercise based on related life domain importance rating information, which was also collected in the survey.</p><p><strong>Results: </strong>Our sample consisted of 1140 NDIS participants. While the majority ranked the domains as equally important, answers from the rating module suggested otherwise. Adjustments for these differences lead to similar results with both age cohorts ranking Health & Wellbeing, Home and Daily living as the most important domains. These were followed by Relationships, Choice & control, Social, Community & Civic participation, Lifelong learning, and Work for younger people. For older people the importance order between the Choice & control and Relationships was switched.</p><p><strong>Conclusion: </strong>Our results revealed similarity between what younger and older people perceive as important and despite often receiving a fair share of policy attention, work was seen, on average, as the least important life domain.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":2.7,"publicationDate":"2025-09-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145055676","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":"The impact of very preterm vs very low birth weight on early and mid-adulthood preference-based HRQoL outcomes: findings from the Dutch study on preterm and small for gestational age infants.","authors":"Corneliu Bolbocean, Paula van Dommelen, Stephen O'Neill, Sylvia van der Pal","doi":"10.1007/s11136-025-04024-8","DOIUrl":"https://doi.org/10.1007/s11136-025-04024-8","url":null,"abstract":"<p><strong>Objectives: </strong>Very preterm (VP, < 32 weeks gestation) birth and very low birth weight (VLBW, < 1500 g) are distinct but overlapping risk factors with different clinical implications. We aimed to investigate the separate and combined impacts of being born VP and/or VLBW on health-related quality of life in early and mid-adulthood.</p><p><strong>Methods: </strong>We analyzed data from the Dutch Project on Preterm and Small-for-gestational-age infants (POPS), a national prospective cohort of individuals born in 1983. Participants were categorized into three groups: (1) VP & VLBW, (2) VP-only, and (3) VLBW-only. We used the Health Utilities Index Mark 3 at ages 19 and 28, and the Short Form 6-Dimension at age 35 to assess multi-attribute utility (MAU) scores and domain-level functioning. Adjusted linear regression models were used, controlling for covariates and employing inverse probability weighting to account for attrition.</p><p><strong>Results: </strong>Overall MAU scores did not consistently differ between the exposure groups and the VP & VLBW reference group at any time point. However, specific domain-level differences emerged in early adulthood. At 19 years, the VLBW-only group reported significantly better speech functioning (β = 0.11, p = 0.01). At 28 years, the VP-only group had better hearing (β = 0.05, p = 0.04), while the VLBW-only group had worse ambulation (β =  - 0.12, p < 0.01). By 35 years, these inter-group differences were no longer statistically significant. Female sex was a consistent predictor of poorer outcomes in several domains by age 35. Attrition-weighted models produced nearly identical results.</p><p><strong>Conclusions: </strong>VP and VLBW are not interchangeable risk categories. While overall HRQoL scores converged by mid-adulthood, distinct domain-specific and sex-based disparities were evident earlier in life. Our findings highlight the need for tailored interventions over a homogenous approach. Future research with consistent measures is required to confirm if this convergence persists over the life course.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":2.7,"publicationDate":"2025-09-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145055690","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":"Understanding health-related quality of life in Chinese infertility patients: a qualitative study.","authors":"Zhao Shi, Yu Zheng, Xiaohong Zhu, Zhuxin Mao, Hongwei Nie, Gang Chen, Shunping Li","doi":"10.1007/s11136-025-04066-y","DOIUrl":"https://doi.org/10.1007/s11136-025-04066-y","url":null,"abstract":"<p><strong>Purpose: </strong>Infertility is a global issue that significantly impacts health-related quality of life (HRQoL), HRQoL has become increasingly relevant in health policies, patient-centered care, and shared clinical decision-making. Socio-contextual factors influence reproductive populations' attitudes towards childbearing, ultimately shaping their HRQoL. The objective of this study was to gain a deeper understanding of fertility issues from the perspectives of infertility patients and fertility professionals, and to develop a comprehensive conceptual framework for understanding infertility patients' HRQoL.</p><p><strong>Methods: </strong>Participants were recruited from a national multicenter interview survey, including four reproductive centers in the east (Jinan), west (Chongqing), south (Guangzhou), and north (Shenyang) of China. This qualitative study was conducted using semi-structured face-to-face interviews with 93 participants. Furthermore, considering that fertility is a relatively private topic, the infertility patients' electronic diaries recorded on an online community (Zhihu) were used as supplementary material. A grounded theory approach was used to analyze the data.</p><p><strong>Results: </strong>In total, 77 infertility patients and 10 fertility professionals were included. A total of 2580 initial concepts were identified, and 71 initial categories were derived from the initial concepts. By summarizing and sorting out the initial categories, 18 sub-categories were identified, including symptoms, physical functioning, role-physical, negative emotions, and reproductive stress, etc. Four principal categories were identified: (i) physical health, (ii) mental health, (iii) social health, and (iv) subjective wellbeing. Finally, we derived a disease-specific HRQoL conceptual framework for infertility patients based on the revised Wilson and Cleary HRQoL model.</p><p><strong>Conclusions: </strong>This study provides a culturally sensitive HRQoL framework for infertility patients in Eastern contexts, addressing gender-specific experiences, and establishing a foundation for tailored interventions that support patient-centered infertility care. Furthermore, these findings will support the development of a novel, disease-specific HRQoL instrument for male and female infertility patients.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":2.7,"publicationDate":"2025-09-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145055035","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":"What are the key targets to improve quality of life among MSM living with HIV on antiretroviral therapy? A network analysis.","authors":"Kedi Jiao, Haitao Wang, Jing Ma, Yuxi Lin, Wenqi Fan, Chunmei Wang, Meizhen Liao, Dianmin Kang, Weiming Tang, Wei Ma","doi":"10.1007/s11136-025-04065-z","DOIUrl":"https://doi.org/10.1007/s11136-025-04065-z","url":null,"abstract":"<p><strong>Purpose: </strong>The study aimed to assess the interconnection of quality of life (QoL) variables and identify key areas for which interventions could improve QoL among men who have sex with men (MSM) living with HIV on antiretroviral therapy (ART).</p><p><strong>Methods: </strong>A cross-sectional study was conducted in Jinan of Shandong Province, between October to December 2020. Undirected network analyses were conducted to examine and visualize the interconnections between QoL variables among MSM living with HIV. Centrality indices, including strength, betweenness, closeness, and expected influence (EI), were calculated to quantify the importance of each variable in the network. A network comparison test was used to assess differences between networks of individuals who initiated ART before and after the introduction of \"Treat-All\" strategy, comparing network structure, edge strength, and global strength.</p><p><strong>Results: </strong>A total of 584 participants were included, with an average overall QoL score of 87.80±12.75. At the domain level, psychology (EI=1.04) emerged as the most central domain within the QoL network. At the item level, satisfaction with the ability to perform activities of daily living showed the highest EI (1.25), followed by access to information (EI=1.12). No significant differences were observed in network structure (Test statistic M=0.21, P=0.317) and global strength (Test statistic S=0.64, P=0.056) between the networks for men who initiated ART before and after the introduction of \"Treat-All\" strategy.</p><p><strong>Conclusion: </strong>Psychological well-being emerged as the most central QoL domain for MSM with HIV on ART, with daily living abilities and information access being key aspects. Thus, HIV care should incorporate interventions improving these and mental health.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":2.7,"publicationDate":"2025-09-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145030443","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}