Quality of Life Research最新文献

{"title":"Feasibility of implementing a codesigned patient reported outcome measures (PROMs) collection system for older adults in acute and sub-acute hospital settings.","authors":"David A Snowdon, Lucy Marsh, Velandai Srikanth, Richard Beare, Rebecca Barnden, Emily Parker, Nadine E Andrew","doi":"10.1007/s11136-025-03931-0","DOIUrl":"10.1007/s11136-025-03931-0","url":null,"abstract":"<p><strong>Purpose: </strong>To test the feasibility of a co-designed PROMs collection system for hospitalised older adults.</p><p><strong>Methods: </strong>A mixed-methods feasibility study was conducted sequentially across one acute and one sub-acute ward, over a 12-week period. Patients aged ≥ 60 years who discharged from hospital were eligible. The EQ-5D-5L with added items on fatigue and cognition was administered on discharge and at 3-6 months post-discharge. Administration was by either a research assistant or volunteer using a variety of modes (tablet computer, phone, SMS). Feasibility was evaluated using a feasibility framework to capture demand, implementation, practicality, and acceptability. Descriptive statistics were applied. Interviews were conducted with volunteers and analysed using deductive content analysis.</p><p><strong>Results: </strong>Completion rates indicated high demand (discharge = 84%, n = 110/131; follow-up = 81%, n = 90/110). At discharge, most completed PROMs on the tablet (57%) and 9% were administered by a volunteer. Most required assistance using the tablet (67%) and the average time to administer PROMs was longest for the tablet (17.9 min, SD = 3.3), followed by phone (8.8 min, SD = 4.4) and SMS (1.3 min, SD = 0.5). Fewer participants reported acceptability with using the tablet (61%) compared to SMS (100%). At follow-up, most completed PROMs on the phone (82%) and the average time to administer PROMs was less than discharge (4.9 vs. 13.4 min). Volunteers reported administering PROMs to unwell patients was challenging.</p><p><strong>Conclusion: </strong>A co-designed PROMs collection system demonstrated feasibility in hospitalised older adults with phone and SMS having greatest acceptability. Administration of PROMs by volunteers was not feasible.</p><p><strong>Trial registration: </strong>ACTRN12623000576628. Registered 25 May 2023.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"1809-1822"},"PeriodicalIF":3.3,"publicationDate":"2025-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143524190","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":"Trajectory of quality of life among patients with cancer at the end of life: a longitudinal survey study.","authors":"Henriette Tind Hasse, Trine Kjær, Søren Rud Kristensen","doi":"10.1007/s11136-025-03923-0","DOIUrl":"10.1007/s11136-025-03923-0","url":null,"abstract":"<p><strong>Purpose: </strong>Measuring and understanding the determinants of HRQoL is essential to the delivery of effective and high-quality end-of-life (EoL) care to patients with cancer. Despite this, the evidence base remains sparse and with much of the existing literature relying on data from cross-sectional studies and clinical trials.</p><p><strong>Aim: </strong>The objective of this study was to describe HRQoL in a population of patients with cancer leading up till death using both the generic preference-based scale European Quality of Life 5 Dimensions 5 Level Version and the disease-specific scale European Organization for the Research and Treatment of Cancer Quality of Life Questionnaire.</p><p><strong>Methods: </strong>Using a longitudinal prospective study design, HRQoL data was collected in four waves over the course of one year. The population consisted of all patients who received cancer-targeted drug treatment at the Department of Oncology at Odense University Hospital, Denmark. Only patients who died during the data collection period were included.</p><p><strong>Results: </strong>HRQoL in patients with cancer was stable for most months and close to the level of the general Danish population at the same age but deteriorated considerably in the last three months of life. The same pattern was observed for both HRQoL scales.</p><p><strong>Conclusion: </strong>Despite current efforts to deliver high-quality EoL care to patients with cancer, we see a general decrease in HRQoL in the months leading up to death. The generic and disease-specific HRQoL scales do capture different dimensions of HRQoL which also, by construct, are weighted differently in the two approaches.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"1695-1707"},"PeriodicalIF":3.3,"publicationDate":"2025-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12119717/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143449964","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":"Development of self-report measures of physical, mental, and emotional fatigability: the michigan fatigability index (MIFI).","authors":"Anna L Kratz, Noelle E Carlozzi, Susan L Murphy, Tiffany J Braley, Daniel Whibley, David A Williams, Nora E Fritz, Michael Kallen","doi":"10.1007/s11136-025-03934-x","DOIUrl":"10.1007/s11136-025-03934-x","url":null,"abstract":"<p><strong>Purpose: </strong>To develop item banks and static short-forms for a patient reported outcome measure of perceived physical, mental, and emotional fatigability-the Michigan Fatigability Index (MIFI).</p><p><strong>Methods: </strong>Building on earlier qualitative work, this study utilized cognitive interviews in samples representing the general adult population across the lifespan, people with multiple sclerosis (MS), or people with fibromyalgia (FM) to develop initial item pools. A nationwide cross-sectional survey study in MS and FM samples was used to field test items to develop item banks.</p><p><strong>Results: </strong>Exploratory and confirmatory factors analyses indicated single underlying dimensions for each of the MIFI subdomains, and a graded response model (GRM) supported item fit of 42, 28, and 23 items to the physical, mental, and emotional fatigability items banks, respectively. Differential item functioning was not detected for age, condition (FM vs. MS), education level, ethnicity, race, or sex. Expert review and GRM calibration data was used to inform the selection of three 6-item short forms that assess physical, mental, and emotional fatigability and to program associated computer adaptive tests.</p><p><strong>Conclusion: </strong>The MIFI shows initial evidence of good psychometric properties. Users can administer the MIFI as a static short form and efforts are underway to provide access to the measure as a computer adaptive test. T-Score scale conversion allows comparison of individual scores to a normative clinical sample with a wide range of fatigability.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"1735-1748"},"PeriodicalIF":3.3,"publicationDate":"2025-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143573696","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 impairment on health-related quality of life in people with multiple sclerosis: association of functional systems and EQ-5D-5L index values in a cross-sectional study.","authors":"Richard Schmidt, Andreas Starke, Natalie Bednarz, Florian Then Bergh","doi":"10.1007/s11136-025-03928-9","DOIUrl":"10.1007/s11136-025-03928-9","url":null,"abstract":"<p><strong>Introduction: </strong>Multiple sclerosis (MS) results in physical and cognitive impairments that negatively affect health-related quality of life (HRQoL). It is unknown to what extent the impact of MS-related impairments on HRQoL are reflected in the association of Expanded Disability Status Scale (EDSS) Functional Systems (FS) scores and EQ-5D-5L index values.</p><p><strong>Methods: </strong>This cross-sectional, single-center cohort study recruited people with MS (pwMS) attending an outpatient clinic at a German university hospital. Impairment was assessed via FS scores during routine visits. HRQoL was measured with EQ-5D-5L index values. The association of each FS score with EQ-5D-5L index values and the additive effect of all FS on EQ-5D-5L index values was modeled with multivariate linear regression (MLR).</p><p><strong>Results: </strong>Analyzing 115 participants, unadjusted MLR of single FS revealed that brainstem, pyramidal, cerebellar, sensory, and cerebral/cognitive dysfunctions were significantly associated with lower HRQoL. In MLR of all FS adjusted for covariates, a one standard deviation decrease in cognitive function was significantly associated with a 6% reduction in HRQoL.</p><p><strong>Conclusion: </strong>Dysfunctions in FS contribute to a decrease in HRQoL. Cognitive dysfunction was identified to maintain negative association with HRQoL after adjustment for covariates, and routinely assessed FS scores appeared useful indicators to identify pwMS who may benefit from comprehensive cognitive evaluations. This study adds to the growing body of evidence emphasizing the crucial role of cognitive function in HRQoL of pwMS and highlights the need for effective screening and therapeutic strategies.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"1773-1781"},"PeriodicalIF":3.3,"publicationDate":"2025-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12119666/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143567972","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":"Enabling six- to ten-year-old children to self-report their wellbeing and quality of life: development and psychometric investigation of an age-adapted and video-assisted version of the KIDSCREEN-27.","authors":"Mette Kurtzhals, Paulina Sander Melby, Peter Elsborg, Peter Bentsen, Caroline Eckert, Malte Nejst Larsen, Glen Nielsen","doi":"10.1007/s11136-025-03939-6","DOIUrl":"10.1007/s11136-025-03939-6","url":null,"abstract":"<p><strong>Purpose: </strong>Identifying the underlying factors that contribute to poor wellbeing and developing strategies for early intervention are essential for promoting overall wellbeing. Many important aspects of wellbeing and quality of life are subjective experiences and therefore require self-report. The KIDSCREEN-27 questionnaire is widely used for this purpose. However, the self-report versions have mainly been validated for children aged 12 to 18 years. This study aims to develop a video-assisted format the KIDSCREEN-27 that enable self-report of wellbeing by children aged six to ten years and to test its psychometric properties.</p><p><strong>Methods: </strong>The Danish-translated version KIDSCREEN-27 was slightly adapted in wording and items (N=12) and a video-format, including audio, illustrations, and smiley-supported scales, was developed, and tested. Next, a psychometric investigation of this version (KIDSCREEN-VIDEO) was conducted on 788 Danish children aged six to ten years (49.8% girls).</p><p><strong>Results: </strong>Confirmatory factor analysis showed an acceptable to good model-fit: X² = 727.053; df = 242; P <0.001; root mean squared error of approximation=0.05; the comparative fit index = 0.98; and the Tucker-Lewis index = 0.98, and factor loadings ranged from 0.40 to 0.88. Cronbach's alpha values ranged from 0.65 to 0.89, suggesting acceptable to good internal reliability of the scales. Linear mixed model analyses, and Pearson's r correlation coefficients showed positive associations with the global and physical self-worth scales, indicating convergent validity. The test for measurement invariance indicated the model fit for the five-factor model was consistent across sex and age groups.</p><p><strong>Conclusion: </strong>Based on our results, the KIDSCREEN-VIDEO provides a promising self-reported measure for wellbeing among children aged six to ten.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"1599-1614"},"PeriodicalIF":3.3,"publicationDate":"2025-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12119647/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143537642","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":"Health-related social needs mitigate ethnoracial inequities in patient-reported mental health.","authors":"Manraj N Kaur, Chengbo Zeng, Sri Harshini Malapati, Nadine J McCleary, Peter Meyers, Allison S Bryant, Andrea L Pusic, Maria O Edelen","doi":"10.1007/s11136-025-03935-w","DOIUrl":"10.1007/s11136-025-03935-w","url":null,"abstract":"<p><strong>Purpose: </strong>To characterize the relationship between ethnoracial identity, health-related social needs (HRSNs), and mental health (MH), and to examine the mediating role of HRSNs on the relationship between MH and ethnoracial identity.</p><p><strong>Methods: </strong>Data from 30,437 adults who were seeking care within Mass General Brigham integrated health system in United States and had completed PROMIS Global Health within three years of their most recent HRSNs screening between March 1, 2018 and January 31, 2023 were included. The presence and magnitude of PROMIS Global MH score differences for six ethnoracial groups (White non-Hispanic, White Hispanic, Black (Hispanic and non-Hispanic), Asian non-Hispanic, Other non-Hispanic and Other Hispanic (includes Asian Hispanic) was assessed. Regression-based mediation analyses were used to examine mediating role of four HRSNs (food insecurity, housing instability, transportation barriers and inability to pay for housing utilities) on relationship between ethnoracial identity and MH.</p><p><strong>Results: </strong>Compared to White Non-Hispanic patients, ethnoracial minorities had worse MH, after adjusting for age, sex, education, employment, marital status, comorbidities, and insurance type. This relationship remained statistically significant (p < 0.001) for White Hispanic, Asian non-Hispanic and Other non-Hispanic patients, where HRSNs mediated 57%, 88% and 70% of the relationship between ethnoracial identity and MH respectively. For Blacks and Other Hispanic patients, HRSNs fully mediated this relationship.</p><p><strong>Conclusion: </strong>Disparities in MH may be driven by structural racism and experiences of racism that result in differentials in HRSNs, rather than ethnoracial identity. Efforts directed at measuring and addressing the HRSNs, in addition to structural factors are critical to achieving MH equity.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"1761-1772"},"PeriodicalIF":3.3,"publicationDate":"2025-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143557823","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":"Evaluating the content validity of the EQ-5D-Y for Chinese children and adolescents.","authors":"Yifan Ding, Guangjie Zhang, Zhihao Yang, Yue Sun, Anle Shen, Zhuxin Mao, Pei Wang, Jan Busschbach","doi":"10.1007/s11136-025-03917-y","DOIUrl":"10.1007/s11136-025-03917-y","url":null,"abstract":"<p><strong>Purpose: </strong>Health-related quality of life (HRQoL) is key for assessing healthcare outcomes in children and adolescents. The EQ-5D-Y-3 L, adapted from the adult version, is widely used to measure HRQoL among 8-18 year-olds. Despite its effectiveness, concerns about its content validity persist, particularly in Chinese populations. This study evaluates the EQ-5D-Y's content validity in China, focusing on the comprehensiveness, relevance, and comprehensibility of its dimensions among both healthy and diseased children.</p><p><strong>Methods: </strong>A qualitative study was conducted with 30 participants (15 healthy, 15 diseased) aged 8-18 in Shanghai, China. The interviews explored participants' perspectives on the EQ-5D-Y's five dimensions, guided by the World Health Organization's (WHO) definition of health. Data were analyzed using a framework approach, with response challenges identified through an adapted model of response issues.</p><p><strong>Results: </strong>A total of 126 codes were generated, with 87 retained and categorized into three themes: physical (n = 16), mental (n = 30), and social health (n = 4). While responses reflected all five EQ-5D-Y dimensions, social health was notably mentioned as crucial but was absent in the EQ-5D-Y. Participants suggested enhancements in mental health coverage and more specific examples for the current dimensions.</p><p><strong>Conclusion: </strong>The EQ-5D-Y is relevant for assessing HRQoL in Chinese children and adolescents but requires improvements, especially in incorporating social health. Enhancing question clarity and specificity could also improve its effectiveness. These findings guide potential refinements to better capture the health experiences of children.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"1587-1596"},"PeriodicalIF":3.3,"publicationDate":"2025-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12119704/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143410142","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":"Recovery trajectories after a serious injury or illness: a longitudinal evaluation of health-related quality of life in an Australian cohort.","authors":"Clifford Afoakwah, Paul Kuwornu, Isaac Koomson, David Brain, Qing Xia, Steven McPhail, Kirsten Vallmuur","doi":"10.1007/s11136-025-03919-w","DOIUrl":"10.1007/s11136-025-03919-w","url":null,"abstract":"<p><strong>Purpose: </strong>Serious injuries or illnesses impose a significant burden on the affected individuals. This study examined the long-term recovery of health-related quality of life (HRQoL) after a serious injury or illness and quantified the economic costs attributable to the quality-adjusted life-years (QALYs) lost to serious injury or illness.</p><p><strong>Methods: </strong>Data were sourced from the Household, Income and Labour Dynamics in Australia (HILDA) database. The propensity score matching-difference-in-differences (PSM-DiD) method was used to explore the recovery of HRQoL over a six-year follow-up period. HRQoL was measured by the short-form six-dimension utility index, physical health, and mental health.</p><p><strong>Results: </strong>We found that those who suffered any serious injuries or illnesses had a decline of 0.020 in QALYs during the year of event, reducing further until a trough of 0.032 by the third year and thereafter began to recover. Further analyses revealed that although serious injuries or illnesses had a significantly greater loss in physical health, the loss in mental health persisted over a longer period. Finally, the economic cost associated with the lost in QALYs due to serious injuries or illnesses was estimated at $685 per person during the year of event and increased to a peak of $1,250 per person by the end of the third-year post-exposure.</p><p><strong>Conclusion: </strong>Our findings highlight that follow-up care designed to mitigate the impacts of a serious injury or illness on people's HRQoL should consider cost-effective strategies that are long-lasting and support those affected throughout at least, the first three years of their injuries or illnesses.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"1657-1667"},"PeriodicalIF":3.3,"publicationDate":"2025-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12119750/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143441806","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":"Correction to: Evaluating the content validity of the EQ-5D-Y for Chinese children and adolescents.","authors":"Yifan Ding, Guangjie Zhang, Zhihao Yang, Yue Sun, Anle Shen, Zhuxin Mao, Pei Wang, Jan Busschbach","doi":"10.1007/s11136-025-03968-1","DOIUrl":"10.1007/s11136-025-03968-1","url":null,"abstract":"","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"1597-1598"},"PeriodicalIF":3.3,"publicationDate":"2025-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12119699/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143764990","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":"Examining differential item functioning in self-reported health survey data: via multilevel modeling.","authors":"Dandan Chen Kaptur, Yiqing Liu, Bradley Kaptur, Nicholas Peterman, Jinming Zhang, Justin L Kern, Carolyn Anderson","doi":"10.1007/s11136-025-03936-9","DOIUrl":"10.1007/s11136-025-03936-9","url":null,"abstract":"<p><p>Few health-related constructs or measures have received a critical evaluation in terms of measurement equivalence, such as self-reported health survey data. Differential item functioning (DIF) analysis is crucial for evaluating measurement equivalence in self-reported health surveys, which are often hierarchical in structure. Traditional single-level DIF methods in this case fall short, making multilevel models a better alternative. We highlight the benefits of multilevel modeling for DIF analysis, when applying a health survey data set to multilevel binary logistic regression (for analyzing binary response data) and multilevel multinominal logistic regression (for analyzing polytomous response data), and comparing them with their single-level counterparts. Our findings show that multilevel models fit better and explain more variance than single-level models. This article is expected to raise awareness of multilevel modeling and help healthcare researchers and practitioners understand the use of multilevel modeling for DIF analysis.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"1569-1577"},"PeriodicalIF":3.3,"publicationDate":"2025-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143531858","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}