Quality of Life Research最新文献

{"title":"Correction: Self-stigma and suicide risk mediates the associations of inattention/impulsivity symptoms with psychological distress and quality of life among people with schizophrenia.","authors":"Thao Thanh Thi Nguyen, Paolo Soraci, Hsiao-Wei Huang, Yun-Ling Chen, Yu-Ting Huang, Renato Pisanti, Kun-Chia Chang, Mark D Griffiths, Chung-Ying Lin","doi":"10.1007/s11136-026-04306-9","DOIUrl":"10.1007/s11136-026-04306-9","url":null,"abstract":"","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":"35 8","pages":""},"PeriodicalIF":3.4,"publicationDate":"2026-07-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13332968/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148387798","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 methodological overview of new measure development for the Limb Injury Measurement Battery for Quality of Life (LIMB-QOL).","authors":"Aaron J Boulton, Seung W Choi, Callie E Tyner, Jerry Slotkin, David S Tulsky","doi":"10.1007/s11136-026-04298-6","DOIUrl":"10.1007/s11136-026-04298-6","url":null,"abstract":"<p><strong>Purpose: </strong>To describe the data analytic strategy used to develop new quality-of-life measures for the Limb Injury Measurement Battery for Quality of Life (LIMB-QOL).</p><p><strong>Methods: </strong>Several item pools were created and administered to a large sample of individuals with a history of major extremity injury or limb loss (n = 603). Item analyses adhered to modern psychometric standards (e.g., PROMIS®, COSMIN) and aimed to create several item response theory-based (IRT) item banks based on the graded response model. Items were removed iteratively based on pre-defined criteria and IRT model assumptions were met for the final item pools (monotonicity, unidimensionality, local item independence); differential item functioning, test-retest reliability, and convergent validity were then evaluated. Computer adaptive test and short-form versions of final item banks were created and examined using data simulation.</p><p><strong>Results: </strong>Item analyses led to the development of 8 new item banks and two fixed-length scales. These 10 new LIMB-QOL measures demonstrated initial evidence of reliability (α range = 0.94-0.98, test-retest ICC range: 0.68-0.91) and convergent validity for use in individuals with a history of major extremity injury or limb loss, and abbreviated formats of the full item banks exhibited comparable performance.</p><p><strong>Conclusion: </strong>The new LIMB-QOL measures demonstrated strong psychometric properties and can be used to collect patient-reported assessments of quality of life following major extremity injury and limb loss. The analytic strategy described herein exemplifies how the PROMIS methodology can be utilized to design IRT-based patient-reported outcome measures to fill measurement gaps for specific clinical populations.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":"35 8","pages":""},"PeriodicalIF":3.4,"publicationDate":"2026-07-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13332956/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148387829","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":"Overview of the limb injury measurement battery for quality of life (LIMB-QOL).","authors":"David S Tulsky, Callie E Tyner, Aaron J Boulton, Pamela A Kisala, Jerry Slotkin, Christopher L Dearth, W Lee Childers, Ross Zafonte, Claire Kalpakjian, Trevor Kingsbury, Seung W Choi, Mark Sherer, Susan Bartlett, Scott Tintle","doi":"10.1007/s11136-026-04310-z","DOIUrl":"10.1007/s11136-026-04310-z","url":null,"abstract":"<p><strong>Purpose: </strong>The Limb Injury Measurement Battery for Quality of Life (LIMB-QOL) was developed to comprehensively assess patient reported outcomes (PRO) for research and clinical use with individuals who have sustained major extremity trauma and limb loss.</p><p><strong>Methods: </strong>A mixed-methods approach was used that included qualitative focus groups with civilians, service members, and clinicians as well as quantitative PRO data collection with individuals with a history of major traumatic limb injury or limb-loss due to such trauma or sudden-onset illness. Individuals with dysvascular and other chronic disease causes were excluded. Qualitative data were collected via focus groups (n = 56 individuals with major extremity trauma; n = 34 clinicians) and cognitive debriefing interviews (n = 41 individuals with major extremity trauma). Quantitative data were obtained through structured phone interviews with a large sample representing the target limb trauma and limb loss population (n = 603). Newly developed item banks were calibrated using graded response model item response theory analysis.</p><p><strong>Results: </strong>LIMB-QOL includes 25 measurement scales including 10 new, targeted item banks developed with and for individuals with major limb trauma and 15 existing PRO item banks measuring salient physical, emotional, and social aspects of health-related QOL. Computer adaptive tests and short forms were programmed into the Assessment Center application programming interface and are now available through REDCap and other platforms.</p><p><strong>Conclusion: </strong>LIMB-QOL provides a comprehensive and standardized system of PRO assessments for individuals with amputation or limb preservation due to sudden-onset limb injury. Research and clinical applications are discussed.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":"35 8","pages":""},"PeriodicalIF":3.4,"publicationDate":"2026-07-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13332998/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148387965","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":"Content validity, face validity and comprehensiveness of generic quality-of-life measures in adults and children with rare genetic conditions and their carers: a think aloud qualitative study.","authors":"Mackenzie Bourke, Xuemin Zhu, Tiffany Boughtwood, Clara Gaff, Amy Hunter, Brendan Mulhern, Tessa Peasgood, Clare Stuart, James Buchanan, Ilias Goranitis","doi":"10.1007/s11136-026-04324-7","DOIUrl":"10.1007/s11136-026-04324-7","url":null,"abstract":"<p><strong>Purpose: </strong>This study aims to assess the content validity, face validity and comprehensiveness of the: (a) EQ-5D-5L, EQ-HWB, and ASCOT SCT4, for adults with rare genetic conditions; (b) the EQ-5D-5L, EQ-HWB, and ASCOT-carer for carers of adults or children with rare genetic conditions; and (c) the EQ-5D-Y-5L carer proxy-complete for children with rare genetic conditions.</p><p><strong>Methods: </strong>In total, 60 qualitative think-aloud interviews were conducted in Australia and England to understand individuals' thought process during the completion of the QoL measures. Participants were subsequently led through a semi-structured discussion. Transcripts were analysed for whether participants demonstrated understanding of the measures and thematic analysis was conducted on responses to the semi-structured discussion.</p><p><strong>Results: </strong>The majority of participants showed good understanding and supported the validity of the measures for people experiencing rare conditions. For carers, however, a broader evaluative space than health-related QoL was preferred. Several non-health domains were identified as important to both patients and carers, including treatment availability, impact on employment and finance, information and uncertainty, medication and carer burden, impact of passing on a condition, relationships and social connection, and experience with the healthcare system.</p><p><strong>Conclusion: </strong>This study provides some support for the face validity and comprehensiveness of the measures for people experiencing rare conditions. However, several participants felt that the narrow health domains were inadequate to capture the breadth of their lived experience. Future research should explore the extent to which the measures capture differences and changes in the QoL domains identified as important to patients and carers.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":"35 8","pages":""},"PeriodicalIF":3.4,"publicationDate":"2026-06-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13310824/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148339807","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":"Comparative performance of EQ-5D-5L bolt-ons in China and the Netherlands: results from the EQ-DAPHNIE project.","authors":"Seo-Ho Cho, Mathieu F Janssen, Fatima Al Sayah, Zhuxin Mao, You-Shan Feng, Lajos V Kemény, Fanni Rencz","doi":"10.1007/s11136-026-04328-3","DOIUrl":"10.1007/s11136-026-04328-3","url":null,"abstract":"<p><strong>Purpose: </strong>This study compares the psychometric properties of eight EQ-5D-5L bolt-ons in the general populations from two culturally distinct countries: China (CN) and the Netherlands (NL).</p><p><strong>Methods: </strong>As part of the EQ-DAPHNIE project, cross-sectional online surveys were conducted in 2024 with quota-based samples approximating the adult population from CN and the NL. Participants completed EQ-5D-5L, eight bolt-ons (vision, hearing, breathing, sleep, tiredness, social relationships, self-confidence, and cognition/memory), and sociodemographic and health-related questions. Psychometric assessments included ceiling, convergent/divergent validity, structural validity, known-groups validity, and explanatory power.</p><p><strong>Results: </strong>The ceiling of the EQ-5D-5L was higher in CN (45%) than NL (32%). In both countries, vision, tiredness, and sleep bolt-ons reduced the ceiling the most, while breathing had the least effect. Tiredness and self-confidence bolt-ons demonstrated stronger associations with the core dimensions. Several bolt-ons significantly improved known-groups validity. In CN, hearing showed stronger known-groups discrimination across age groups, while self-confidence had the greatest impact in NL. The core dimensions explained more variance in EQ VAS in NL (37%) than CN (25%). In both countries, tiredness and self-confidence contributed most to increasing the variance explained. Principal component analysis (PCA) confirmed a seven-factor structure, with all bolt-ons loading separately from the core dimensions. In country-specific PCAs, no major differences were observed between CN and NL.</p><p><strong>Conclusion: </strong>While certain bolt-ons demonstrated robust psychometric properties in both countries, others showed greater context dependence. These findings add to the growing body of evidence supporting the development of the experimental EQ-5D Bolt-on Toolbox.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":"35 8","pages":""},"PeriodicalIF":3.4,"publicationDate":"2026-06-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13310819/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148339799","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":"Explaining inequalities in quality of life: a longitudinal study of health disparities in Norway.","authors":"Jan Abel Olsen, Gang Chen, Ola Løvsletten","doi":"10.1007/s11136-026-04311-y","DOIUrl":"10.1007/s11136-026-04311-y","url":null,"abstract":"<p><strong>Purpose: </strong>Studies of health inequalities often examine the association between a single health indicator and a single socioeconomic indicator. Recent research has increasingly explored social disparities in self-reported quality of life. However, most evidences are based on cross-sectional survey and the role of health behaviours is frequently overlooked in these analyses. This study aims to integrate broader sets of socioeconomic and behavioural variables to better explain health disparities that emerge in later adulthood.</p><p><strong>Methods: </strong>Using longitudinal data from the Norwegian population-based Tromsø Study, we followed 11,313 adults aged 25-54 at baseline over 21 years. A series of self-reported outcomes were studied, particularly EQ-5D-5L values, EQ-VAS scores, and Self-Rated Health. Predictors included three socioeconomic indicators (childhood living standard, own and spouse's educational attainment) and three health behaviours (smoking, physical activity, obesity). Shapley value decompositions were used to quantify each predictor's contribution to explained variance.</p><p><strong>Results: </strong>For all three health outcomes, health behaviours accounted for the majority of the explained variance compared to socioeconomic factors: 80% for EQ-5D-5L, 75% for EQ VAS, and 67% for Self-Rated Health. When adjusting for differences in baseline health, the relative importance of health behaviours increased slightly.</p><p><strong>Conclusion: </strong>This study underscores the critical role of health behaviours in explaining inequalities in quality of life, providing new insights into the mechanisms driving these disparities. While preventing childhood deprivation would have significant impact on adult health, potential health benefits of promoting healthy behaviours are substantial. Both types of policy interventions could thereby contribute to reducing health inequalities.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":"35 8","pages":""},"PeriodicalIF":3.4,"publicationDate":"2026-06-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13310827/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148339867","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":"Eligibility definitions and response rate accuracy in studies using routinely collected PROMs: a systematic review.","authors":"Johanna Laine, Eila Kankaanpää","doi":"10.1007/s11136-026-04320-x","DOIUrl":"10.1007/s11136-026-04320-x","url":null,"abstract":"<p><strong>Purpose: </strong>Patient reported outcome measures (PROMs) are increasingly used to assess treatment outcomes and quality of care. This systematic review examined how eligible populations and response rates (RRs) were reported in published studies using routinely collected PROMs.</p><p><strong>Methods: </strong>A systematic literature search in the PubMed, Scopus, Web of Science, Cinahl, PsycINFO and Cochrane library databases on Jan 15, 2024, and Feb 10, 2025, focused on studies employing routinely collected PROM data in research. Articles not related to a health care context were excluded. Definitions of eligibility were categorized as \"all treated\", \"all recruited\" or \"other\". RRs were obtained at baseline (BL) and the last follow-up (FU), and their accuracy was assessed according to the eligibility definitions.</p><p><strong>Results: </strong>From 3806 abstracts and 344 full-text articles, 92 articles (94 datasets) were included. Eligibility was defined as \"all treated\" in 26% of the studies and as \"all recruited or \"other\" in 41% and 33%, respectively. Authors frequently fail to apply their own eligibility definitions in RR calculations, leading to incorrect RRs in 47% of datasets due to incomplete eligible populations or flawed denominator choices. Only 5% of studies clearly defined RRs. RR values varied widely. The systematic use of a defined eligible population was linked to a decline in average RRs over the FU.</p><p><strong>Conclusion: </strong>These findings suggest that inaccurate eligibility definitions and denominator use may bias RRs, limiting the reliability of PROM data. Although PROM datasets are increasingly used, data quality remains underdiscussed. This review highlights the need to improve the reporting of eligibility and RRs while using routinely collected PROMs.</p><p><strong>Protocol registration: </strong>PROSPERO CRD42023494821.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":"35 8","pages":""},"PeriodicalIF":3.4,"publicationDate":"2026-06-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13303456/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148318590","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":"Designing oncology-specific patient-reported outcome dashboards: end-user preferences for reference curve inclusion and visualization in pediatric cancer care.","authors":"R Alkirawan, S A Schepers, R R L van Litsenburg, M A Grootenhuis","doi":"10.1007/s11136-026-04326-5","DOIUrl":"10.1007/s11136-026-04326-5","url":null,"abstract":"<p><strong>Purpose: </strong>Patient Reported Outcome Measures PROMs are essential for monitoring health-related quality of life (HRQoL) in pediatric oncology. In the Netherlands, the KLIK PROM portal facilitates structured HRQoL communication between healthcare professionals (HCPs) and families. Currently, HRQoL scores are compared to general population norms. Children with cancer face unique challenges; comparisons with the general population alone may aggravate perceived difficulties and create unnecessary discomfort. An oncology-specific reference would provide appropriate clinical context and improve interpretability. This study evaluated end-user preferences for the inclusion and visualization of such a reference curve within the portal.</p><p><strong>Method: </strong>Four focus groups with 13 HCPs, 6 patient interviews, and 12 interviews with 15 parents (including three interviews with both parents) were conducted for this qualitative study. Participants discussed preferences for adding and visualizing an oncology-specific reference curve. NVIVO was used to code transcripts and support thematic analysis.</p><p><strong>Results: </strong>All end-users, except three parents, valued the integration of an oncology-specific reference curve. Three major themes emerged regarding visualization preferences: (1) Normalization: Most participants preferred focusing on normal outcomes, with graphs showing a broad range of - 2 to + 2 SD in a neutral color (e.g. blue).; (2) Deficit-focused framing: end-users opposed overemphasizing deviations (e.g. the potential emotional impact of using traffic light colors); (3) Customization: end-users favored a switch option to tailor curves to patients' needs.</p><p><strong>Conclusion: </strong>End-users preferred a customizable oncology-specific reference curve enabling fair peer comparison without distressing visuals. Future implementation should focus on training HCPs to support patient-centered communicate of the new dashboard in clinical practice.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":"35 8","pages":""},"PeriodicalIF":3.4,"publicationDate":"2026-06-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13303578/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148318601","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":"Concerns about \"a direct comparison of the measurement properties of the PROMIS-16 and EQ-5D-5L in the U.S. general population\".","authors":"Chengbo Zeng, Ron D Hays, Maria O Edelen","doi":"10.1007/s11136-026-04325-6","DOIUrl":"10.1007/s11136-026-04325-6","url":null,"abstract":"<p><p>In this commentary, we expressed concerns about the design and findings of a recent study that directly compared the measurement properties of PROMIS-16 and EQ-5D-5 L in the U.S. general population.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":"35 8","pages":""},"PeriodicalIF":3.4,"publicationDate":"2026-06-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148318587","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":"Associations influencing quality of life in caregivers of patients with amyotrophic lateral sclerosis: a stress-process model approach.","authors":"Nafiye Turkmenel, Ersin Uskun","doi":"10.1007/s11136-026-04318-5","DOIUrl":"10.1007/s11136-026-04318-5","url":null,"abstract":"<p><strong>Background: </strong>Caring for patients with amyotrophic lateral sclerosis (ALS) involves demands that reduce caregivers' quality of life. Although caregiver burden and perceived social support was conceptualized as an independent correlate of quality of life rather than a factor operating primarily through caregiver burden. This study examined these associations within a stress-process framework in which perceived social support was conceptualized as an independent correlate rather than a buffering factor.</p><p><strong>Methods: </strong>This cross-sectional analytical study included 118 informal caregivers of patients with ALS. Primary stressors were defined as patient functional status (ALSFRS-R), caregiving duration, and communication difficulty. Caregiver burden (Zarit Burden Interview) was considered a secondary stressor. Physical and mental quality of life were assessed using the SF-12, and perceived social support was measured with the Multidimensional Scale of Perceived Social Support. Hierarchical regression analyses were performed to examine associations specified in the conceptual model while controlling for caregiver sociodemographic and socioeconomic variables. Additional mediation analyses were conducted to examine whether caregiver burden mediated the relationship between perceived social support and quality of life.</p><p><strong>Results: </strong>Poorer patient functional status was significantly associated with higher caregiver burden, whereas communication difficulty showed a positive but non-significant association after adjustment for caregiver characteristics. Caregiver burden showed negative associations with both physical and mental quality of life. Perceived social support remained positively associated with quality of life after adjustment for caregiver burden and contributed additional explained variance in the models. Mediation analyses showed no evidence that caregiver burden mediated the association between perceived social support and either physical or mental quality of life.</p><p><strong>Conclusions: </strong>The findings are consistent with a stress-process framework in ALS caregiving, in which caregiver burden represents a central factor statistically associated with both caregiving stressors and quality of life, while perceived social support shows an independent association with quality of life. These findings suggest that both caregiver burden and perceived psychosocial resources may be relevant to caregiver well-being, although causal and intervention-related implications require further investigation.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":"35 8","pages":""},"PeriodicalIF":3.4,"publicationDate":"2026-06-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13290779/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148302720","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}