Health and Quality of Life Outcomes最新文献

{"title":"Development and content validation of a health assessment item bank for regional health big data: a sequential mixed-methods approach.","authors":"Yizhu Zhang, Hua Chen, Wendi Zhu, Guofang Zhao, Yi Li, Hongyu Sun","doi":"10.1186/s12955-026-02512-0","DOIUrl":"10.1186/s12955-026-02512-0","url":null,"abstract":"<p><strong>Background: </strong>Health assessment instruments are essential for individual health monitoring, yet most existing tools rely on periodic surveys and lack the capacity to integrate large-scale digital health data. With the increasing availability of regional health big data, there is a need to establish comprehensive indicator resources that can inform the development of validated instruments tailored to local health contexts. This study aimed to develop and validate a health assessment item bank based on regional health big data, providing a structured foundation for subsequent instrument development.</p><p><strong>Methods: </strong>A sequential mixed-methods design was adopted. First, semi-structured interviews were conducted with experts from diverse health-related disciplines to identify key health categories and subcategories. A preliminary conceptual framework was produced through a directed qualitative content analysis process. Second, data elements were extracted from the national Regional Health Information Platform Interaction Standard (WS/T 790) of China and related standards. These data elements were vectorized using a Chinese pre-trained RoBERTa model, clustered with the DBSCAN algorithm, and matched to the conceptual framework through cosine similarity. Finally, experts reviewed and rated the semantic matching results by scoring the matching relevance from 1 to 5, agreement among experts were evaluated with the Fleiss' Kappa analysis, and consensus discussions were conducted to refine the item pool and ensure content validity.</p><p><strong>Results: </strong>The resulting item bank comprised 430 indicators distributed across five main categories and 17 subcategories. The main categories are Physiological health, Psychological health, Health behaviors, Social health, and Environment and healthcare services. Expert review yielded high agreement (mean score = 4.95/5.00; Fleiss' Kappa = 0.626), supporting the adequacy of content validity. The Social support and Health service subcategories contained no mapped indicator, highlighting areas requiring integration of additional data sources.</p><p><strong>Conclusions: </strong>This study established a comprehensive and validated item bank for health assessment based on regional health big data, offering a structured foundation for future development, calibration, and psychometric testing of health assessment instruments. This work contributes to advancing data-driven, context-specific approaches for monitoring health at the individual level.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":" ","pages":""},"PeriodicalIF":3.9,"publicationDate":"2026-03-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13112824/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147480556","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Item generation for a tooth wear-specific patient-reported outcome measure.","authors":"Melissa Sin, Richard Holliday, Helen Rogers, Rijula Karanjkar","doi":"10.1186/s12955-025-02472-x","DOIUrl":"10.1186/s12955-025-02472-x","url":null,"abstract":"<p><p>INTRODUCTION: The effective management of tooth wear is one of the biggest challenges faced in modern dentistry. Tooth wear can significantly impact oral health-related quality of life, yet there is no existing condition-specific patient-reported outcome measure (PROM) available to accurately capture and comprehensively measure this impact. This study aims to qualitatively explore patient perspectives of tooth wear to generate items for a condition-specific PROM. METHODS: Adults referred to Newcastle Dental Hospital for management of diagnosed tooth wear were invited to participate in a semi-structured qualitative interview. Participants were purposively selected from a range of ages, genders, with varied tooth wear aetiology and severity, and at different stages of treatment. Recruitment continued until purposive sampling requirements had been met, and data saturation was reached. Thematic analysis was undertaken independently by two researchers, prior to discussion to reach agreement on the identified themes. RESULTS: Seventeen participants with a range of tooth wear aetiologies, severity and at different stages of treatment were interviewed. Thematic analysis produced three broad themes including psychosocial impact of tooth wear, effect on function and knowledge and understanding of tooth wear. CONCLUSIONS: This study demonstrates the broad impacts that tooth wear can have on patients’ oral health-related quality of life, and has generated a wealth of items to inform generation of a condition-specific PROM. Understanding how tooth wear can impact on oral health-quality of life from a patients perspective is a critical first step in generation of a condition-specific patient-reported outcome measure. </p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":" ","pages":""},"PeriodicalIF":3.9,"publicationDate":"2026-03-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13107632/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147473376","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Anticipating incomplete patient-reported outcomes in schizophrenia: a machine learning approach to predict the occurrence of missing data.","authors":"Guillaume Barbalat, Julien Plasse, Isabelle Chéreau-Boudet, Benjamin Gouache, Emilie Legros-Lafarge, Nathalie Guillard-Bouhet, Nicolas Franck","doi":"10.1186/s12955-026-02511-1","DOIUrl":"10.1186/s12955-026-02511-1","url":null,"abstract":"<p><p>BACKGROUND: Missing data in patient-reported outcome (PRO) databases is a pervasive challenge, particularly in psychiatry and psychosocial rehabilitation. Incomplete data may reduce the generalizability of findings and introduce selection bias. It may also signal loss of access to care, potentially hindering recovery and rehabilitation efforts. Proactively anticipating missingness can help mitigate this issue by identifying individuals at risk of missing values, enabling services to take timely and targeted actions in response. However, the predictability of incomplete PRO data remains underexplored. METHODS: We used data from the French multicentric psychosocial rehabilitation database REHABase, focusing our analysis on patients with schizophrenia. We developed an ensemble machine learning model to predict missing data occurrence across six PROs, incorporating treatment center affiliation, sociodemographic features and clinical predictors. To ensure interpretability, we applied the concept of Shapley values to quantify individual predictor contributions to missing data patterns. RESULTS: Our sample comprised N = 2,363 participants. Averaged areas under the receiving operating curve (AUC) measured on the holdout testing observations ranged from 0.73 to 0.78 across the six PRO scales, demonstrating good predictive performance of our ensemble model. Treatment center affiliation emerged as a critical predictor of missing data. The ten most influential patient-level predictors were: being a disabled worker beneficiary; educational attainment; housing status; duration of illness; antipsychotic medication; origin of the referrer; number of suicide attempts; addictions comorbidity; having a forensic history; and sex. We also identified directional contributions distinguishing positive (increased likelihood of missing values) and negative effects (decreased likelihood). CONCLUSIONS: To our knowledge, this work represents the first predictive analytics framework for the occurrence of missing PRO data in psychosocial rehabilitation. Our ensemble algorithm holds dual potential: improving data collection strategies and informing targeted interventions to enhance patient engagement and retention. By proactively identifying at-risk individuals and refining study designs, our model could also indirectly support better functional recovery outcomes for schizophrenia patients. </p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":" ","pages":""},"PeriodicalIF":3.9,"publicationDate":"2026-03-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13104463/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147456934","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"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 quality of life and six-month hospitalization in older outpatients with heart failure with reduced ejection fraction: a prospective observational study.","authors":"Huan Thanh Nguyen, Huong Thi Mai Nguyen, Huy Quang Nguyen","doi":"10.1186/s12955-026-02514-y","DOIUrl":"10.1186/s12955-026-02514-y","url":null,"abstract":"<p><p>BACKGROUND: Health-related quality of life (HRQoL) is an important component of heart failure (HF) management but remains insufficiently characterized among older outpatients in low- and middle-income countries. The primary objective of this study was to determine the prevalence of impaired HRQoL in older Vietnamese outpatients with heart failure with reduced ejection fraction (HFrEF). The secondary objectives were to identify factors associated with impaired HRQoL and to examine factors associated with six-month HF hospitalization. METHODS: We conducted a prospective observational study between August 2024 and June 2025 among outpatients aged ≥ 60 years with confirmed HFrEF at two specialized HF clinics. HRQoL was assessed using the Kansas City Cardiomyopathy Questionnaire-23 (KCCQ-23), with impaired HRQoL defined as a score < 50. Participants were followed for six months for first HF hospitalization. Multivariable logistic regression was used to assess factors associated with impaired HRQoL, and Cox proportional hazards models were applied to evaluate factors associated with hospitalization. RESULTS: Among 310 patients (median age 71 years), 48 (15.5%) had impaired HRQoL at baseline. Depression (odds ratio [OR] 4.12, 95% confidence interval [CI] 1.70–9.97; P = 0.002) and New York Heart Association (NYHA) class III (OR 6.55, 95% CI 3.01–13.9; P < 0.001) were independently associated with impaired HRQoL. During follow-up, 92 patients (29.7%) experienced a first HF hospitalization, of whom 32 (34.8%) had impaired HRQoL at baseline. Age ≥ 75 years (hazard ratio [HR] 1.93, 95% CI 1.22–3.06; P = 0.005), limitations in instrumental activities of daily living (HR 2.34, 95% CI 1.16–4.73; P = 0.018), and impaired HRQoL (HR 2.10, 95% CI 1.26–3.51; P = 0.004) were independently associated with a higher risk of hospitalization. Receipt of quadruple therapy was associated with a lower risk (HR 0.63, 95% CI 0.40–0.99; P = 0.047). CONCLUSIONS: In older outpatients with HFrEF, impaired HRQoL was observed in approximately one-sixth of patients and was associated with depression and NYHA class III. Over six months, impaired HRQoL, advanced age, and limitations in instrumental activities of daily living were associated with an increased risk of HF hospitalization, whereas receipt of quadruple therapy was associated with a reduced risk. CLINICAL TRIAL NUMBER: This study was not registered as a clinical trial. </p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":" ","pages":""},"PeriodicalIF":3.9,"publicationDate":"2026-03-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13097829/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147456966","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Trajectories of health-related quality of life after cancer diagnosis in a cohort of Australian women: a longitudinal study.","authors":"Md Mijanur Rahman, Julia Steinberg, Michael David, Xue Qin Yu, Julie Byles, Claudia Rutherford, Emily Banks, Haoyu Zhang, Karen Canfell, Mei Ling Yap","doi":"10.1186/s12955-026-02508-w","DOIUrl":"10.1186/s12955-026-02508-w","url":null,"abstract":"<p><p>BACKGROUND: With increasing cancer survival rates, optimising health-related quality of life (HRQL) has become a major priority. However, longitudinal assessments of HRQL outcomes in people with cancer are limited. This study aimed to examine changes in HRQL outcomes following a cancer diagnosis and to identify the long-term trajectories of HRQL outcomes and associated factors. METHODS: This study included 1414 women diagnosed with primary invasive cancer from 1996 to 2019 and 2828 women without cancer from a large cohort (born in 1946-51) of the Australian Longitudinal Study on Women’s Health, linked to the Australian Cancer Database. Generalised linear models were used to estimate changes in HRQL outcomes, adjusting for sociodemographic factors and other health conditions. Group-based multitrajectory modelling was applied to identify HRQL trajectories over time. RESULTS: In the short-term (≤ 3 years), we found a significant decline in the adjusted mean difference (AMD) across all HRQL domains from pre-cancer to post-cancer surveys, with the largest decrease in general health (AMD − 10.3, 95% CI: -11.43, -9.18). The corresponding changes within the same period among women without cancer were not significant at p < 0.05, except for physical functioning. In the long-term (≤ 15 years), four HRQL trajectory groups were identified: very low HRQL trajectory (n = 184, 13%), moderate HRQL trajectory (n = 355, 25%), moderate-high HRQL trajectory (n = 532, 38%), and high HRQL trajectory (n = 343, 24%). In the control sample, a greater proportion of women belonged to the high HRQL trajectory group (29% versus 24%). Cancer survivors in the very low or moderate HRQL trajectory groups had significantly lower HRQL domain scores than the corresponding trajectory groups in the control group (p < 0.05). Compared with the high HRQL trajectory group, the very low HRQL trajectory group experienced greater difficulties in managing their available income (60% versus 22%, p < 0.01) and had ≥ 2 comorbidities (42% versus 9%, p < 0.01). CONCLUSIONS: Our findings suggest the importance of measuring HRQL soon after diagnosis as a baseline measure and considering both baseline and ongoing HRQL when guiding supportive care for women cancer survivors. Additionally, targeted initiatives that prevent and manage comorbidities and financial hardship in those with low HRQL at baseline are critical for equitable care. </p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":" ","pages":""},"PeriodicalIF":3.9,"publicationDate":"2026-03-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13094074/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147443406","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Psychometric evaluation of the Chinese CancerSupportSource^TM-Caregiver among family caregivers to colorectal cancer patients using CTT and Rasch analyses.","authors":"Rui Xia, Di Tian, Ying Zhou, Meihua Zhong, Yuxia Lin, Jinqiong He, Weilin Lin, Jin Li, Hui Li, Yuan Yang, Qiao Wang, Xueying Xiao, Xi Su","doi":"10.1186/s12955-026-02507-x","DOIUrl":"10.1186/s12955-026-02507-x","url":null,"abstract":"<p><p>BACKGROUND: Family caregivers of colorectal cancer (CRC) patients often experience significant distress, yet no validated instrument exists in China to screen for this distress. This study aimed to translate the CancerSupportSource™-Caregiver (CSS-Caregiver) scale into Chinese and evaluate its psychometric properties among CRC family caregivers. METHODS: A cross-sectional study was conducted with 340 family caregivers of CRC patients from three tertiary hospitals in Guangzhou. The Chinese CSS-Caregiver was translated and culturally adapted. Its psychometric properties were assessed using both Classical Test Theory and Rasch analysis. Reliability was evaluated via internal consistency and test-retest reliability. Validity was examined through confirmatory factor analysis (CFA), item-total correlations, and convergent validity. Measurement invariance was tested using multi-group CFA and Differential Item Functioning (DIF). The optimal cut-off score was determined via ROC analysis. RESULTS: The Chinese CSS-Caregiver demonstrated excellent internal consistency (Cronbach’s α = 0.902) and test-retest reliability (ICC = 0.935). CFA supported the original five-factor structure with good model fit (χ²/df = 2.064, CFI = 0.956, RMSEA = 0.073). Rasch analysis indicated generally satisfactory item fit and person separation. The scale exhibited strict measurement invariance across sex, age, and residence, with negligible DIF. Strong convergent validity was demonstrated by correlations with the criterion measures (r = 0.81 ~ 0.85). An optimal cut-off score of 18.5 was established. CONCLUSIONS: The Chinese CSS-Caregiver is a valid and reliable instrument for assessing distress among family caregivers of CRC patients in China, facilitating early identification and timely psychosocial support. </p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":" ","pages":""},"PeriodicalIF":3.9,"publicationDate":"2026-03-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13088487/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147432326","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Are we reporting well enough? A systematic survey of missing data in patient-reported outcomes from non-small cell lung cancer randomized trials.","authors":"Jinyi Ma, Wenbo He, Fangyuan Jing, Meixuan Li, Zhengchi Li","doi":"10.1186/s12955-026-02503-1","DOIUrl":"10.1186/s12955-026-02503-1","url":null,"abstract":"<p><p>BACKGROUND: Missing patient-reported outcome (PRO) data represent a frequent and significant challenge in clinical trials. Inadequate handling or reporting of such data may introduce bias, undermine the validity of findings, and limit the interpretability of treatment effects, particularly in oncology research where patient experience is a key outcome. PURPOSE: This systematic survey evaluated how missing PRO data were handled in randomized controlled trials (RCTs) involving patients with non-small cell lung cancer (NSCLC). METHODS: A comprehensive search was conducted in PubMed, Embase, Web of Science, Scopus, and ClinicalTrials.gov for NSCLC RCTs reporting PROs (up to June 6, 2024). Two independent reviewers assessed study eligibility and extracted predefined data on the extent of missing PROs and the statistical methods used to address them. Descriptive statistics and logistic regression analyses were performed. RESULTS: Of 13,019 records screened, 252 RCTs met the inclusion criteria. Most trials (70.2%) reported missing PRO data; however, only 45.2% specified statistical handling methods, most commonly complete case analysis, mixed-effects models, or mixed-effects model for repeated measures. Among 52 trials with PROs as primary outcomes, only 12 reported sensitivity analyses. Trials with larger sample sizes or those with PROs as primary endpoints were significantly more likely to report missing data. Clinical events (e.g., death or disease progression) were the predominant reasons for missingness, while procedural or methodological causes were less frequently reported. CONCLUSION: The reporting and statistical management of missing PRO data in NSCLC RCTs remain suboptimal. Most trials relied on conventional methods with limited use of advanced techniques or sensitivity analyses, raising concerns about bias and interpretability. Future trials should prioritize prespecified strategies, robust statistical modeling, and transparent reporting to enhance the validity and clinical relevance of PRO evidence. </p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"24 1","pages":""},"PeriodicalIF":3.9,"publicationDate":"2026-03-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12961827/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147365072","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Psychometric properties of the health-related quality of life instrument with 8 items: a systematic review and meta-analysis.","authors":"Tai-Kyung Lee, So-Young Lee, Eun Cho","doi":"10.1186/s12955-026-02494-z","DOIUrl":"10.1186/s12955-026-02494-z","url":null,"abstract":"<p><p>BACKGROUND: The Health-Related Quality of Life Instrument with 8 items (HINT-8) is a preference-based generic measure developed in 2014 for the Korean population. HINT-8 encompasses eight domains: climbing stairs, pain, vitality, working, depression, memory, sleep, and happiness. With the increasing use of HINT-8 in diverse research settings, a comprehensive synthesis is needed to clarify its psychometric performance and clinical utility. This study evaluated the properties of HINT-8 through a systematic review and meta-analysis. METHODS: We systematically searched PubMed, KoreaMed, KMbase, KISS, and Google Scholar for studies published from January 2019 to December 2024 reporting HINT-8 outcomes. Data on HINT-8 index scores and domain-level outcomes were extracted for quantitative synthesis. Four pooled analyses were conducted: (1) construct validity using correlation with EQ-5D and SF-36, (2) reliability using Cohen’s kappa and intraclass correlation coefficients, (3) overall and domain-specific ceiling effects based on response distributions, and (4) subgroup specific HINT-8 index scores across demographic and clinical characteristics. Random-effects meta-analyses were performed, and statistical heterogeneity was assessed using I² and τ² statistics. RESULTS: Among the 70 studies reporting HINT-8 outcomes, 23 contributed to the quantitative synthesis. Lower HINT-8 index scores were observed among female, older adults, and individuals with lower socioeconomic status compared with their respective reference groups. Correlation coefficients demonstrated expected construct validity with higher correlations for similar domains. Distinct HINT-8 domains such as vitality, working, memory and sleep showed low correlations with EQ-5D or SF-36, reflecting its unique construct coverage. Reliability assessed by Cohen’s kappa ranged from 0.237 to 0.521 across domains, while intraclass correlation coefficients indicated substantial agreement. HINT-8 showed lower ceiling effects (5.4% [95%CI: 2.3–8.6]) than EQ-5D (41.0% [25.4–56.6]), indicating better discriminatory ability. HINT-8 index values showed clear differences across various health conditions and demographic factors. CONCLUSION: With enriched domains, HINT-8 demonstrated sensitivity and utility as a generic measure for capturing diverse health statuses when applied with established tariff-derived index scores. As all included studies were conducted in Korea, further validation in diverse settings is warranted. </p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":" ","pages":""},"PeriodicalIF":3.9,"publicationDate":"2026-03-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13067613/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147354798","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Ethnic disparities in health-related quality of life and cognitive function after stroke in the Netherlands.","authors":"Ying Xing Lee, Korné Jellema, Thea P M Vliet Vlieland, Ido R van den Wijngaard, Danique E C M Hofs, Henk J Arwert","doi":"10.1186/s12955-026-02498-9","DOIUrl":"10.1186/s12955-026-02498-9","url":null,"abstract":"<p><p>BACKGROUND/OBJECTIVE: European data regarding ethnic disparities in health-related quality of life (HRQOL) post- stroke is scarce and none used the Patient-Reported Outcomes Measurement Information System (PROMIS). This study explores whether ethnicity is related to HRQOL using PROMIS and cognitive function after stroke in the Netherlands. METHODS: Patients hospitalized with a first-ever stroke were included. Outcome assessments included the PROMIS Profile, the EuroQoL-5D-3 L for HRQOL and the PROMIS Cognitive Function for cognitive functioning. Measurements were done at admission, after 3 and 12 months (EQ-5D and EQ-5D-VAS only at 12 months). Ethnicity (migration background yes/no), demographics and stroke characteristics were collected. Outcomes were compared between patients with and without a migration background by a multivariate linear mixed-effects model, adjusted for age, sex, education level, severity of stroke and other relevant variables at baseline were also included (smoking before admission, acute intervention in case of an ischemic stroke and length of hospital stay). RESULTS: 262 patients were included of which 74 (28.2%) had a migration background. This group had worse scores compared to patients without a migration background, with a significant difference at admission for the physical function (estimate = 3.30, SE = 1.25, p = 0.01), at three months for anxiety (estimate=-2.95, SE = 1.48, p = 0.05) and twelve months for sleep disturbance (estimate=-5.43, SE = 1.61, p < 0.01). The EQ-5D index and EQ-5D VAS at twelve months follow-up was also significantly lower in this group compared to patients without a migration background (respectively adjusted B -0.09 (95% CI -0.17; -0.01)) and adjusted B -7.27 (95% CI (-13.99; -0.56)). CONCLUSION: Up to twelve months, stroke patients with a migration background had worse scores and a different trajectory regarding several domains of HRQOL compared to patients without a migration background. </p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":" ","pages":""},"PeriodicalIF":3.9,"publicationDate":"2026-02-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13041081/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147305110","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Developing a utility value set for the Alcohol Quality of Life Scale-Brief (AQoLS-Brief) using a discrete choice experiment.","authors":"Amandine Luquiens, Henri Panjo, Nathalie Pelletier-Fleury","doi":"10.1186/s12955-026-02501-3","DOIUrl":"10.1186/s12955-026-02501-3","url":null,"abstract":"<p><p>BACKGROUND: The Alcohol Quality of Life Scale-Brief (AQoLS-Brief) is a patient-reported outcome measure developed with input from individuals with alcohol use disorder (AUD). This study aimed to develop a utility set for the AQoLS-Brief based on general population preferences to support cost-utility analyses. METHODS: We conducted a discrete choice experiment with duration in a probabilistic sample of French adults (n = 704). Participants chose between paired comparisons of health states described by seven AQoLS-Brief dimensions of varying survival durations. Conditional logit models with interactions between attribute levels and time were used to estimate utility decrements. These anchored coefficients were used to compute quality-adjusted life years (QALY) weights for all 16,384 possible AQoLS-Brief health states. RESULTS: Respondents reported that the tasks were understandable, realistic, and that all attributes were considered. Utility weights ranged from 1 for full health state to − 1.1 for worst state; 23.9% of states were valued as worse than dead. The two items most heavily weighing down the utility set were “Missing out on family life” (–0.59) and “Financial difficulties” (–0.45), highlighting the central role of social and economic functioning in the perceived burden of AUD. Substantial decrements were also observed for “Feeling of wasting my life” and “Life revolving around alcohol.” CONCLUSIONS: This study provides a QALY-anchored value set for the AQoLS-Brief, enabling its use in cost-utility analyses. The findings underscore the importance of social, emotional, and financial domains in AUD-related quality of life. Further cross-cultural validation and responsiveness testing in clinical settings are needed. </p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":" ","pages":""},"PeriodicalIF":3.9,"publicationDate":"2026-02-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13040723/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147305107","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}