Quality of Life Research最新文献

{"title":"Do generic population utility scores accurately represent real-world experienced health?","authors":"J Felipe Montano-Campos, Anirban Basu","doi":"10.1007/s11136-025-04060-4","DOIUrl":"https://doi.org/10.1007/s11136-025-04060-4","url":null,"abstract":"<p><strong>Purpose: </strong>Typically, cost-effectiveness analyses use societal utility weights for health states. These anticipated utility weights are derived from asking the general population to assess the impacts of hypothetical health states on their quality-of-life. This study evaluates how these weights align with real-world self-reported experienced health statuses.</p><p><strong>Methods: </strong>We compared the self-reported health statuses of approximately 30,000 Argentine respondents from the nationally representative National Risk Factors Survey to their corresponding derived health-related quality of life (HRQoL) using social utility weights estimated by Augustovski et al. (Value Health 12:587-596, 2009) for this population. Survey weights ensured national representativeness. We modeled the relationship between these derived HRQoL and the probability of self-reported health states (ranging from poor to excellent) using a multinomial logistic regression with various nonlinear specifications, selecting models via AIC and BIC.</p><p><strong>Results: </strong>The analysis revealed a distinct non-monotonic relationship between HRQOL and probabilities of self-reported \"poor\" and \"good\" health statuses. The non-monotonicity was found over the lower range of HRQOL values up to 0.16, where the likelihood of \"poor\" (\"good\") health increased as HRQoL increased (decreased). A positive monotonic relationship was found for \"very good\" and \"excellent.\"</p><p><strong>Conclusions: </strong>The findings indicate a discrepancy between societal HRQOL weights and patient-reported outcomes at lower health levels. This discrepancy may reflect that the general population underestimates the burden of severe health conditions rather than patient adaptation, as adaptation is unlikely to translate into experiencing good or better health when true health is poor. Our results suggest that the field of cost-effectiveness should consider patients' experienced utility weights.</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":"145030497","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 of single-person households in the United States: results from the 2014-2023 Behavioral Risk Factor Surveillance System.","authors":"Seonkyeong Yang, Ilsoo Park, Hyun Jin Song","doi":"10.1007/s11136-025-04054-2","DOIUrl":"https://doi.org/10.1007/s11136-025-04054-2","url":null,"abstract":"<p><strong>Purpose: </strong>Little is known about the health-related quality of life (HRQOL) of single-person households. We evaluated the physical and mental health impairment associated with household arrangements.</p><p><strong>Methods: </strong>We conducted a cross-sectional analysis of 2014-2023 Behavioral Risk Factor Surveillance System (BRFSS) data. We included individuals aged ≥ 18 years and categorized household living arrangements into single-person, two or more adults, single-parent with children, parents with children, and others. Study outcomes included physically and mentally unhealthy days for measuring HRQOL using the Healthy Days Measures. Survey logistic regression models were used to estimate HRQOL for each household living arrangement, controlling for sociodemographic and clinical variables.</p><p><strong>Results: </strong>Among 1,532,179 individuals, 23.2% and 10.5% were single-person households and parents with children households, respectively. Single-person households had a significantly lower physical (adjusted odds ratio [aOR] 1.25, 95% confidence interval [CI] 1.18-1.33) and mental health (aOR 1.33, 95% CI 1.25-1.41) compared to parents with children. For physical health, compared to parents with children, single female households showed higher aOR (aOR 1.36, 95% CI 1.25-1.48) than single male households (aOR 1.10, 95% CI 1.00-1.21); particularly, single female households aged ≤ 44 years showed higher OR for physical health (aOR 1.43, 95% CI 1.21-1.69). Mental health was significantly reduced in both male (aOR 1.32, 95% CI 1.20-1.46) and female (aOR 1.30, 95% CI 1.21-1.40) single households.</p><p><strong>Conclusions: </strong>Single-person households had poorer physical and mental health, especially the physical health of young single women, highlighting the need for further longitudinal research to explore potential causal relationships.</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":"145030401","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":"Implementation of standardized HRQoL measurement for Chinese ischemic stroke patients: comments on Wang et al.'s longitudinal multi‑center study.","authors":"Sadia Farhana","doi":"10.1007/s11136-025-04059-x","DOIUrl":"https://doi.org/10.1007/s11136-025-04059-x","url":null,"abstract":"","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":"145030481","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":"Parent/caregiver perspectives of meaningful improvement in functional domains for people with CDKL5 deficiency disorder: a mixed-methods study.","authors":"Jessica Keeley, Zoe Skoda, Karen Utley, Eric D Marsh, Gabrielle A Conecker, JayEtta Hecker, Natasha N Ludwig, Helen Leonard, Jacinta Saldaris, Peter Jacoby, Sharon Pincus, Tim A Benke, Scott T Demarest, Jenny Downs","doi":"10.1007/s11136-025-04048-0","DOIUrl":"https://doi.org/10.1007/s11136-025-04048-0","url":null,"abstract":"<p><strong>Purpose: </strong>CDKL5 deficiency disorder (CDD) is a rare developmental and epileptic encephalopathy. Greater understanding of the smallest meaningful improvements for individuals with CDD in clinical trials and practice is needed for a person-centred approach to treatment efficacy. This study explored how parent/caregivers of people with CDD understood meaningful improvements and described change for priority functional domains including communication, gross motor, fine motor, feeding.</p><p><strong>Methods: </strong>This study included an in-person workshop and a convergent mixed-methods online survey. Parent/caregivers (n = 19) attending the 6th Family Educational and Awareness Conference for CDD participated in discussion groups for the workshop component. The survey (n = 80) collected descriptive data and open-ended responses. Qualitative data were stratified by ability levels and analysed using a conventional content analysis.</p><p><strong>Results: </strong>Definitions of meaningful improvement varied in terms of desired speed and magnitude of change and included health and skill stability. Parent/caregivers described meaningful increases in developmental skills that were specific to each domain and level of ability. Some concepts were common across ability levels within domains (e.g., increased independence across all gross motor levels) and others were consistent across domains (e.g., improved utensil use in fine motor and feeding domains).</p><p><strong>Conclusion: </strong>Meaningful improvement means different things to different people with some factors consistent regardless of ability level suggesting important underlying concepts for measurement requiring future investigation. These findings can contribute to the development of clinical treatments and trials that focus on factors that are important to people with CDD and their families.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":2.7,"publicationDate":"2025-09-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145024126","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":"Uses of the ICECAP measure of capability in adults with neurological health conditions: a scoping review.","authors":"Jared Brown, Christina Elhatton, Magnus Hasiuk, Sophie Menet-Espina, Olayinka Akinrolie, Hal Loewen, Ruth Barclay","doi":"10.1007/s11136-025-04055-1","DOIUrl":"https://doi.org/10.1007/s11136-025-04055-1","url":null,"abstract":"<p><strong>Purpose: </strong>The purpose was to identify how the ICECAP-A and ICECAP-O have been used with adults who have neurological health conditions.</p><p><strong>Methods: </strong>Following the Joanna Briggs Institute framework, a scoping review was conducted, searching five databases (Scopus, CINAHL, MEDLINE, Embase, and PsycINFO). Studies were included if participants were adults (age 18+ years) with neurological health conditions, and ICECAP-A or ICECAP-O were used in the study. Exclusions included studies about mental health conditions, protocols, and abstracts. Two authors screened abstracts and full texts independently. Conflicts were resolved through consensus. Data were categorized and synthesized.</p><p><strong>Results: </strong>Search results included 1163 articles and 571 studies were screened. The team reviewed 37 full-text articles, with 14 studies included. Eleven studies utilized ICECAP-O; three utilized ICECAP-A. Nine studies were from Europe, three from Canada, and two from Australia. The uses of ICECAP measures included psychometric studies (9), economic evaluation (3), program evaluation (1), and testing associations (1). Nine studies focused on dementia, with 7 of those including proxy evaluations, two studies involved individuals with spinal cord injury, and one study each focused on individuals with Parkinson's disease, epilepsy, and various neurological conditions. Both ICECAP-O and ICECAP-A were referred to in the studies as measures of well-being, capability, quality of life or some combination.</p><p><strong>Conclusions: </strong>ICECAP-O has not been thoroughly examined in neurological health conditions outside of dementia. There is potential for further psychometric testing of both ICECAP-A and ICECAP-O in neurological conditions and research into the application of capability measures in clinical and research settings.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":2.7,"publicationDate":"2025-09-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145008406","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-5D-5L composite and component items in the U.S. General population and by age group.","authors":"Minh Pham, Benjamin M Craig, Fanni Rencz","doi":"10.1007/s11136-025-04053-3","DOIUrl":"https://doi.org/10.1007/s11136-025-04053-3","url":null,"abstract":"","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":2.7,"publicationDate":"2025-09-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145001291","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 of unemployed individuals diagnosed with a mental illness: a cross-sectional study.","authors":"A P Liegert, F S Hussenoeder, M Koschig, M Alberti, L Bieler, C Rohde, K Stengler, S G Riedel-Heller, I Conrad","doi":"10.1007/s11136-025-04051-5","DOIUrl":"https://doi.org/10.1007/s11136-025-04051-5","url":null,"abstract":"<p><strong>Background: </strong>Unemployment is a recognized risk factor for impaired physical and mental health, and numerous studies have shown that unemployed people often report a reduced health-related quality of life (HRQoL). The concurrent effects of having a mental illness and being unemployed reinforce one another, leading to chronic symptoms and reduced employability. This study examined the relationships between unemployment, HRQoL and other work- and health-related factors in unemployed individuals with mental illnesses.</p><p><strong>Methods: </strong>We analyzed cross-sectional data from unemployed adults participating in the \"Leipzig-Individual Placement and Support for people with mental illnesses\" (LIPSY) project. All participants met ICD-10 criteria for at least one mental disorder. HRQoL was assessed with the 12-Item Short-Form Survey (SF-12), yielding a Physical Component Summary (PCS) and Mental Component Summary (MCS). Two multiple regression analyses (outcomes: PCS, MCS) included age, gender, education, partnership status, social network size, unemployment duration (≤ 24 vs 24 months), work ability score (WAS), and depression, anxiety, and somatization (Mini-Symptom Checklist, Mini-SCL) as predictors.</p><p><strong>Results: </strong>Our sample included 452 unemployed participants with mental illnesses with an average age of 35.5 years, 50.4% were female. Higher age and somatization were negatively associated with PCS, while female gender, work ability, and anxiety showed positive associations. MCS was negatively associated with higher education, depression, and anxiety, and positively with work ability.</p><p><strong>Conclusion: </strong>Our findings highlight the complex associations between demographic, psychological, and work-related factors and HRQoL. Supportive measures for unemployed individuals could have a dual impact by improving both HRQoL and employability.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":2.7,"publicationDate":"2025-09-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144966338","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":"Systematic reviews of patient-reported outcome measures (PROMs): table templates for effective communication.","authors":"Ellen B M Elsman, Maarten Boers, Caroline B Terwee, Dorcas Beaton, Inger Abma, Olalekan Lee Aiyegbusi, Alessandro Chiarotto, Kirstie Haywood, Karen Matvienko-Sikar, Ava Mehdipour, Diana M Oosterveer, Lidwine B Mokkink, Martin Offringa","doi":"10.1007/s11136-025-04058-y","DOIUrl":"10.1007/s11136-025-04058-y","url":null,"abstract":"<p><strong>Purpose: </strong>Systematic reviews of outcome measurement instruments (OMIs) are an important tool to guide the selection of OMIs for research and clinical practice. However, presenting the large amount of complex data pertaining both to the quality of each study (i.e., risk of bias) as well as the quality of the instrument (i.e., measurement properties), along with the underpinning certainty of evidence, is challenging. Here, we aim to provide guidance on optimizing data presentation in OMI systematic reviews, specifically focusing on patient-reported outcome measures (PROMs).</p><p><strong>Methods: </strong>A multidisciplinary team of experts in OMI systematic reviews, research reporting, and data visualization built on existing table templates from OMERACT and the COSMIN initiative, to align with reporting items in a recently developed reporting guideline for systematic reviews of OMIs: PRISMA-COSMIN for OMIs 2024. To enhance clarity and usability, we applied data visualization principles by reducing non-essential elements and improving interpretability through structured layouts and concise explanatory text.</p><p><strong>Results: </strong>We present eight templates for reporting PROM systematic review results: three pertain to PROM characteristics, two to studies' characteristics, two to the evaluation of measurement properties, and one to the summary of findings. We also provide recommendations on whether to include these templates in the review's main manuscript or in the supplementary materials. Word versions of these templates can be downloaded from www.prisma-cosmin.ca and www.cosmin.nl .</p><p><strong>Conclusion: </strong>Templates complementing the PRISMA-COSMIN for OMIs 2024 reporting guidance can be used to standardize and enhance the clarity and usefulness of OMI systematic reviews focusing on PROMs. They comprise a comprehensive set of tools to effectively report OMI systematic reviews, in service of end-users who are selecting OMIs.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":2.7,"publicationDate":"2025-09-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144966257","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":"Patient-reported outcomes and their associated factors at 1- and 2-year follow-up after lumbar spine surgery: a surgery registry study.","authors":"Ling Jie Cheng, Nick Bansback, Gabriel Ka Po Liu, Wenru Wang, Vivien Xi Wu, Nan Luo, Hwee Weng Dennis Hey","doi":"10.1007/s11136-025-04049-z","DOIUrl":"https://doi.org/10.1007/s11136-025-04049-z","url":null,"abstract":"<p><strong>Purpose: </strong>Degenerative lumbar conditions are a leading cause of disability worldwide, often requiring surgery when conservative treatments fail. Data on surgical outcomes from patients' perspectives and influencing factors remain limited. This study aimed to assess 1-year and 2-year Patient-Reported Outcomes (PROs) following lumbar spine surgery and identify factors associated with these outcomes.</p><p><strong>Methods: </strong>This surgery registry study included 1,195 adult patients who underwent lumbar spine surgery between 2017 and 2022 at a tertiary hospital in Singapore. Patients completed the EQ-5D-3L and Oswestry Disability Index before surgery, as well as one year (n = 741) and two years (n = 440) after surgery. Multivariable logistic regression identified factors influencing PRO improvements at the dimension level.</p><p><strong>Results: </strong>The mean age of the patients was 58.1 years (SD 16.1). From baseline to 1-year, patients experienced the largest improvements in pain/discomfort (δ = 0.55-0.56) and social functioning (δ = 0.48-0.53), while improvements in activities of daily living and functional tasks were smaller, with negligible change in lifting (δ = 0.04); these effects largely persisted at the 2-year follow-up. Patients with poorer baseline PROs consistently improved across all PROs at the 1-year follow-up. Higher education and conditions affecting only the L4/5 spinal level were associated with better outcomes in activities of daily living, pain/discomfort, and social functioning. Higher education and a prolapsed disc diagnosis were associated with functional task improvements. At year two, poorer baseline PROs remained influential, while the absence of comorbidities emerged as a significant factor.</p><p><strong>Conclusions: </strong>Substantial improvements in pain/discomfort and social functioning domains occurred within the first year and persisted into year two, while physically demanding tasks such as lifting remained difficult to restore. Patients with poorer baseline PROs and higher education derived the greatest benefit, emphasising tailored pre-operative interventions to optimise outcomes.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":2.7,"publicationDate":"2025-09-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144993239","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 life in progressive cognitive decline-let's not throw the baby out with the bathwater.","authors":"Irina Kinchin","doi":"10.1007/s11136-025-04009-7","DOIUrl":"10.1007/s11136-025-04009-7","url":null,"abstract":"<p><p>Assessing quality of life in progressive conditions like dementia presents unique challenges for Health Economics and Outcomes Research (HEOR). This commentary discusses current practices, highlighted by recent appraisals of lecanemab by NICE, where concerns about proxy-reported data-specifically, the risk of underestimating benefits-were noted as a limitation in the evaluation. While progressive cognitive decline complicates traditional self-reporting methodologies, emerging evidence demonstrates that adaptive strategies and technology-assisted methods can extend reliable self-reporting windows. The analysis identifies four critical challenges: (1) cognitive heterogeneity across dementia subtypes and stages clashing with HEOR's stable preference assumptions; (2) temporal fluctuations undermining single-timepoint assessments; (3) systematic discrepancies between self- and proxy-reported outcome data, inadequately addressed by current methods; and (4) the conceptual and psychometric limitations of current generic and condition-specific instruments. To address these challenges, the author advocates for a paradigm shift, inviting HEOR community to view diverse expressions of preference as a catalyst for innovation. This involves moving beyond static, binary preference assumptions to embrace dynamic, multimodal methods capturing non-verbal expressions in more advanced dementia. Proposed solutions include proxy calibration, an ecosystem of hybrid and graduated assessment integrating standardized domains with adaptable modules; reforming proxy protocols using Pickard's dual-gap framework to position proxy input as complementary, not substitutive; employing modern psychometrics and adopting relationship-centred engagement and process consent. Crucially, it calls for HEOR to integrate adaptive methods from adjacent fields-such as phenomenological inquiry, sensor technology, and data triangulation. These approaches can enhance the ability of HEOR to measure, value, and assess quality of life in the context of dementia and other progressive neurodegenerative conditions, ultimately anchoring value in lived experience and ensuring methodological limitations do not become barriers to accessing care and treatments.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"2549-2558"},"PeriodicalIF":2.7,"publicationDate":"2025-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12431887/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144507955","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}