Rammant E, Deman E, Fonteyne V
… +38 more, Poppe L, Bultijnck R, Dirix P, De Meerleer G, Haustermans K, Van Hecke A, Aguado-Barrera ME, Avuzzi B, Azria D, Chang-Claude J, Chiorda BN, Choudhury A, Calvo-Crespo P, De Ruysscher D, Gómez-Caamaño A, Heumann P, Hopkins AM, Johnson K, Lambrecht M, Mcwilliam A, Menz BD, Poelaert F, Rancati T, Rans K, Rattay T, Rosenstein BS, Seibold P, Shortall J, Sperk E, Sundahl N, Talbot CJ, Vega A, Vermeulen P, Webb A, West CML, Veldeman L, Van Hoecke S, REQUITE consortium
Health Qual Life Outcomes
· 2025 Nov · PMID 41318568
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PURPOSE/OBJECTIVE: Prostate cancer (PC) survivors frequently experience multiple co-occurring symptoms that adversely affect health-related quality of life (HRQoL). Identifying symptom clusters (SCs) may help to improve...PURPOSE/OBJECTIVE: Prostate cancer (PC) survivors frequently experience multiple co-occurring symptoms that adversely affect health-related quality of life (HRQoL). Identifying symptom clusters (SCs) may help to improve symptom management and patient care. The aim of this study is to investigate (1) SCs in PC patients, (2) associations of SCs with HRQoL, and (3) predictors of SCs. MATERIAL/METHODS: We used data from an international, multi-centre, prospective cohort study (REQUITE). SCs were identified from patient-reported outcomes collected with the EORTC Core Quality of Life questionnaire (EORTC QLQ-C30) and pelvic symptom questionnaires. Machine learning techniques identified SCs, associations with HRQoL and SCs predictors. The dataset was divided into training (80%) and validation (20%) cohorts. RESULTS: Data were analysed from 1538 (before radiotherapy (T0)), 1490 (end of radiotherapy (T1)), 1322 (12-months (T2)), and 1219 (24-months (T3)) patients. SCs identified at T0: SC1 (gastro-intestinal), SC2 (fatigue, urinary, emotional and cognitive functioning), and SC3 (pain, physical, role, and social functioning). SCs changed at T1: SC1 (gastro-intestinal symptoms), SC2 (fatigue, urinary problems, insomnia), SC3 (social and role functioning), and SC4 (pain, bowel problems, physical, emotional, and cognitive functioning). At T2, symptoms returned to baseline clusters. SCs including ‘fatigue’ or ‘urinary symptoms’ were most frequent across time-points. At T0, T2 and T3, HRQoL was best predicted by clusters 2 and 3 (35–45% explained variance). At T1, cluster 4 was the best predictor (52% explained variance). Planned radiotherapy target volume, prostate specific antigen (PSA) at pre-diagnostic biopsy, age and alcohol consumption were the best predictors of SC2 at T1 and SC3 and fatigue-dyspnoea at T3. CONCLUSION: Although SCs including fatigue and urinary symptoms were most common, the ‘pain, bowel problems, physical, emotional and cognitive functioning’ SC at T1 was associated most strongly with HRQoL. The predictors can help to identify men at risk for specific SCs.
Health Qual Life Outcomes
· 2025 Nov · PMID 41316347
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BACKGROUND: Older people (aged 65 years and over) frequently present to urgent or emergency care settings, often with multiple health and social care needs. Despite this, their quality-of-life (QOL) is rarely assessed in...BACKGROUND: Older people (aged 65 years and over) frequently present to urgent or emergency care settings, often with multiple health and social care needs. Despite this, their quality-of-life (QOL) is rarely assessed in a systematic or meaningful way. Capturing QOL in these settings is essential for delivering person-centred care for guiding improvements in service planning and delivery. This study aimed to evaluate the construct validity of the Quality-of-life - Aged Care Consumers, (QOL-ACC), an older people specific QOL instrument, in the context of urgent or emergency care. METHODS: Data were collected via an online survey which included demographic questions, the QOL-ACC, the EQ-5D-5L (a health-specific measure), the Urgent Care Questionnaire (UCSQ) and global self-reported health and QOL questions. Construct validity was assessed through Convergent and known-group validity. Convergent validity was assessed using 13 a priori hypotheses predicting correlations between the QOL-ACC and its dimensions and the other validated instruments. Known group validity was assessed with four a priori hypotheses comparing QOL-ACC scores across subgroups defined by self-rated health and QOL, areas of socio-economic advantage and disadvantage care needs at home. RESULTS: Among 205 respondents (mean age 75 ± 6.0 years, 59% female), 37 (18.0%) were receiving home-based aged care services. The QOL-ACC utility scores demonstrated moderate correlation with the EQ-5D-5L (ρ = 0.60) and the EQVAS (ρ = 0.57). Low to moderate correlation was demonstrated with the 3 dimensions of the UCSQ (ρ = 0.27 ρ = 0.34, ρ = 0.37). The QOL-ACC was able to discriminate between groups with different self-rated health and QOL levels (P < 0.001). No significant differences were observed by areas of socio-economic advantage and disadvantage nor by care needs at home. CONCLUSIONS: The QOL-ACC demonstrated strong construct validity for assessing QOL in older people accessing urgent or emergency care. Its ability to distinguish between self-rated health and QOL, with consistent scores across socio-economic groups and care use, supports its broad applicability. Further research is needed to assess its reliability and responsiveness in these settings.
Health Qual Life Outcomes
· 2025 Nov · PMID 41316228
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BACKGROUND: Cancer remains a leading cause of morbidity and mortality worldwide, with low- and middle-income countries like Bangladesh facing a dual burden of rising incidence and limited healthcare infrastructure. Socio...BACKGROUND: Cancer remains a leading cause of morbidity and mortality worldwide, with low- and middle-income countries like Bangladesh facing a dual burden of rising incidence and limited healthcare infrastructure. Socioeconomic disparities, particularly economic social class, may exacerbate the adverse effects of cancer on health-related quality of life (HRQoL) (e.g., health utility scores). This study aimed to evaluate inequalities in health utility scores among cancer patients receiving systemic and/or radiation therapy. METHODS: This cross-sectional study included 607 patients with a confirmed cancer diagnosis who were receiving systemic and/or radiation therapy treatment in two tertiary hospitals in Bangladesh. Patients were grouped into income quintiles, and health utility scores were assessed using EQ-5D-5L instrument. Socioeconomic inequalities were assessed using relative (rich-poor ratio) and absolute (rich-poor difference) measures, the concentration index, and regression-based decomposition analysis. Associations between health utility scores and key factors such as cancer stage, type, treatment facility, and physical activity, were examined using a generalise linear model with a Gamma distribution and log link function. RESULTS: Patients in the highest income quintile had significantly higher health utility scores compared with those in the lowest income quintile (relative inequality = 1.10; absolute difference = 0.07). The concentration index indicated a pro-rich distribution of health utility scores (CI = 0.025, SE = 0.019). Subgroup analyses demonstrated pronounced disparities by cancer stage, cancer type, and treatment facility. Advanced-stage disease, cancers of the female reproductive organs, and lung cancer were associated with larger income-related gaps. Inequalities were most evident self-care and usual activities dimensions of the EQ-5D-5L instrument, where the poorest patients had substantially higher risks of severe/extreme problems. Decomposition analysis identified advanced cancer stage, treatment in public hospitals, and physical inactivity as major contributors to lower utility scores, underscoring the compounded disadvantage among low-income patients. CONCLUSION: Socioeconomic disparities, measured by income quintiles, were associated with significant differences in HRQoL (i.e. health utility scores) among Bangladeshi cancer patients. Inequalities were most pronounced in specific subgroups, particularly those with advanced disease, certain cancer types, and limited physical activity. Targeted, equity-focused interventions or strategies such as enhanced supportive and palliative care, rehabilitation and physical activity programs and improved access to quality services in public facilities, may help reduce income-related gaps in quality of life.
Chen Y, Hu X, Xiong C
… +7 more, Guo Y, Wei L, Wan X, Yang Q, He C, Liu Y, Liu X
Health Qual Life Outcomes
· 2025 Nov · PMID 41310588
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BACKGROUND: The quality of life of schizophrenics is an important public health issue, but studies exploring the mechanisms that contribute to the quality of life are still lacking. We aimed to investigate the relevance...BACKGROUND: The quality of life of schizophrenics is an important public health issue, but studies exploring the mechanisms that contribute to the quality of life are still lacking. We aimed to investigate the relevance of social support, anxiety and depression symptoms on the quality of life in community-dwelling schizophrenics, particularly the mediating roles of these symptoms between social support and quality of life. METHODS: Data were collected from a cohort study of community-dwelling schizophrenics in west China. The relationship between main variables was discussed through correlation analysis. Causal mediation analysis was used to explore the direct effect of social support on patients' quality of life and the indirect effect through anxiety and depression symptoms. RESULTS: Of 915 included participants, the mean age was 50.85 (SD = 12.48) years, and 437 (47.76%) were males. Social support was negatively correlated with anxiety and depression symptoms and positively correlated with quality of life. Anxiety and depression symptoms were both negatively correlated with quality of life. The results of parallel multiple mediation analysis showed that anxiety and depression symptoms jointly mediated this association. The total natural indirect effect of social support on physical health was 0.060 (95%CI: 0.036, 0.089) and on mental health was 0.084 (95%CI: 0.046, 0.127). But no significant direct effect was found in the multiple mediation analysis of social support on mental health. CONCLUSIONS: Social support can affect quality of life either directly or indirectly through anxiety and depression symptoms in community-dwelling schizophrenics. It may provide references for subsequent studies on related mechanisms of action.
Feng J, Luo N, Zhang C
… +7 more, Jiang Y, Chen G, Yang Z, Mao Z, Wang J, An J, Li S
Health Qual Life Outcomes
· 2025 Nov · PMID 41291754
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OBJECTIVES: This study aimed to identify and develop disease-specific additional items (bolt-ons) for the EQ-5D-5L for patients with chronic obstructive pulmonary disease (COPD) in China. METHODS: We identified and devel...OBJECTIVES: This study aimed to identify and develop disease-specific additional items (bolt-ons) for the EQ-5D-5L for patients with chronic obstructive pulmonary disease (COPD) in China. METHODS: We identified and developed the bolt-ons using a three-step qualitative approach. Step 1: A content review of twenty-five COPD-specific instruments was conducted to identify potential gaps in the dimensions covered by the EQ-5D-5L. Step 2: We conducted semi-structured, face-to-face, one-on-one qualitative interviews with eight physicians and twenty COPD patients to understand patients lived experiences and explore factors influencing their Health-Related Quality of Life (HRQoL). Based on the findings from the first two steps, an initial version of the bolt-ons was developed. Step 3: We conducted Delphi consultations with fifteen experts and conducted cognitive debriefing interviews with eight patients to revise the structure, language, and framing of the bolt-ons. Finally, we invited nine experts to participate in a group discussion, which led to the final selection of the bolt-ons. RESULTS: Through multiple rounds of qualitative methods, “Breathing problems,” “Limitations in physical activities due to shortness of breath,” “Social activities,” “Tiredness/lack of strength,” and “Sleep problems” were identified as the most appropriate bolt-ons for assessing HRQoL in COPD patients. CONCLUSION: Five bolt-ons were identified as the most relevant candidates for assessing HRQoL in individuals with COPD. Further quantitative validation and analysis will be conducted to determine the final selection.
Health Qual Life Outcomes
· 2025 Nov · PMID 41261414
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BACKGROUND: Previous studies identified individual characteristics as factors affecting health-related quality of life (HRQoL) scores. Nevertheless, most studies employed univariate or multiple regression analyses, which...BACKGROUND: Previous studies identified individual characteristics as factors affecting health-related quality of life (HRQoL) scores. Nevertheless, most studies employed univariate or multiple regression analyses, which have limitations in handling confounding variables and measurement errors across multiple dependent variables. This study therefore aimed to assess psychometric properties, investigate factors affecting HRQoL using the World Health Organization Quality of Life — Brief Version (WHOQOL-BREF) and the EuroQol five-dimension, five-level questionnaire (EQ-5D-5L) among general Thai population using structural equation modelling (SEM) and to compare the results with the traditional regression analyses. METHODS: The study utilized secondary data from the 2023 Thai population norms survey. Face-to-face interviews were conducted with 2,000 adults. However, SEM analysis was performed on data from 1,927 participants, after excluding 73 individuals to meet the assumption of normality. The study adapted Ferran’s model to fit the available data and evaluated measurement properties (i.e., internal consistency and convergent and discriminant validity). It also employed partial least squares SEM (PLS-SEM) to examine structural relationships and model properties through predictive relevance (Q2), effect size (f2), and goodness of fitness (GOF). RESULTS: Age significantly impacted WHOQOL-BREF scores (β = [Formula: see text]0.264, f2 = 0.037). For EQ-5D-5L, age (β = [Formula: see text]0.304, f2 = 0.071), occupation (β = [Formula: see text]0.422, f2 = 0.036), and drug (β = [Formula: see text]0.288, f2 = 0.052) were key factors. However, traditional regression yielded different results for drug and occupation factors on WHOQOL-BREF and MCS scores. General health perception was the strongest predictor of HRQoL for both models exhibiting acceptable reliability and validity. For most dependent variables explained by the model, predictive power was medium to large, except for the mental component summary, which displayed a small predictive value (Q² = 0.115). Both models demonstrated a high fit (GOF: 0.539 and 0.521 for WHOQOL-BREF and EQ-5D-5L, respectively). CONCLUSIONS: Different statistical approaches yield varying results as SEM indicates that age, occupation, and drug significantly influence HRQoL scores, whereas traditional regression finds no significant effects for drug and occupation. Nevertheless, these findings can guide policymakers in allocating resources to targeting population groups with low levels of HRQoL.
Assefa E, Bird V, Priebe S
… +2 more, McNamee P, Feng Y
Health Qual Life Outcomes
· 2025 Nov · PMID 41250232
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BACKGROUND: EQ-5D and ICECAP-A instruments are widely used as outcome measures in economic evaluation. This study aimed to evaluate the validity and responsiveness of EQ-5D-5L and ICECAP-A for economic evaluation in pati...BACKGROUND: EQ-5D and ICECAP-A instruments are widely used as outcome measures in economic evaluation. This study aimed to evaluate the validity and responsiveness of EQ-5D-5L and ICECAP-A for economic evaluation in patients with chronic depression in England. METHODOLOGY: Data from 365 patients with chronic depression who took part in a cluster randomised controlled trial were used. The EQ-5D-5L, ICECAP-A and four additional outcome measures (MANSA, BDI-II, MADRS and CGI-S) were administrated at baseline and 12-months post-randomisation. We assessed the floor/ceiling effect, structural validity, convergent validity, known-group validity, and responsiveness of EQ-5D-5L and ICECAP-A in this population. RESULTS: Exploratory factor analysis with pooled EQ-5D-5L and ICECAP-A items suggested a two-factor solution (i.e. psychosocial wellbeing and physical functioning factors). The EQ-5D-5L index and ICECAP-A index were positively correlated with each other (ρ = 0.578, p < 0.001). The two measures correlated the strongest with the BDI-II, and the weakest with CGI-S. Both EQ-5D-5L index and ICECAP-A index showed good discriminative ability. Mental health condition specific measures (BDI-II, MADRS and CGI-S) and a subjective quality of life measure (MANSA) reported better responsiveness than EQ-5D-5L index and ICECAP-A index. The ICECAP-A index reported better responsiveness than the EQ-5D-5L index. The responsiveness of the EQ-5D-5L was largely driven by the anxiety/depression dimension, followed by the usual activities dimension. For the ICECAP-A, four attributes of the instrument reported good responsiveness except for the autonomy attribute. CONCLUSIONS: EQ-5D-5L and ICECAP-A showed good validity and responsiveness among patients with chronic depression in England. We recommend ICECAP-A as an outcome measure in economic evaluation for medical interventions that aim to improve the psychosocial wellbeing of adults with chronic depression for the instrument’s structural validity and its better responsiveness than the EQ-5D-5L. TRIAL REGISTRATION: The trial was registered on 13/06/2019. The registration number is ISRCTN11301686.
Health Qual Life Outcomes
· 2025 Nov · PMID 41239404
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OBJECTIVE: Accurate health-related quality of life (HRQOL) data after video-assisted thoracic surgery (VATS) are lacking for older patients with non-small cell lung cancer (NSCLC). We aimed to characterize the trajectori...OBJECTIVE: Accurate health-related quality of life (HRQOL) data after video-assisted thoracic surgery (VATS) are lacking for older patients with non-small cell lung cancer (NSCLC). We aimed to characterize the trajectories of symptom burden and functional interference and identify predictors of delayed recovery. METHODS: In this longitudinal study, older adults (aged 60–80 years) with NSCLC undergoing VATS were enrolled. The MD Anderson Symptom Inventory for Lung Cancer (MDASI-LC) was used to assess symptom burden and functional interference at preoperative, discharge, and 7 days, 1, 2, 3, and 6 months after discharge. RESULTS: Complete prospective data were available for 250 of 254 consecutive patients (98.4% completion rate). The cohort had a median age of 68 years (IQR: 64–71) and comprised 40.9% men. The four most prevalent symptom items were fatigue, pain, shortness of breath, and coughing, while the four most prevalent interference items were general activity, work (including housework), walking, and enjoyment of life. By 6 months after discharge, 68.8% of patients overall returned to preoperative levels (symptoms: 66.9–83.5%; interference: 62.6–66.5%). Multivariable analysis identified the extent of VATS resection (wedge → segmentectomy → lobectomy)as an independent predictor of delayed recovery (ORs per increment:1.868–2.109, 95% CIs:1.260–3.157). CONCLUSION: The majority of older adults’ symptom burden and functional interference returned to preoperative levels 6 months after discharge. The extent of VATS resection was independently associated with delayed recovery. These findings advocate for the preoperative integration of recovery patterns into surgical strategy selection, particularly when weighing oncological radicality against geriatric patients’ physiological reserves.
Health Qual Life Outcomes
· 2025 Nov · PMID 41225512
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OBJECTIVE: The aim of this study was to adapt the original English Breakthrough Pain Assessment Tool (BAT) into a Chinese version (BAT-C), following Beaton's cross-cultural adaptation guidelines, and evaluate its psychom...OBJECTIVE: The aim of this study was to adapt the original English Breakthrough Pain Assessment Tool (BAT) into a Chinese version (BAT-C), following Beaton's cross-cultural adaptation guidelines, and evaluate its psychometric properties among cancer patients, thereby providing a foundation for the standardized and evidence-based assessment of breakthrough pain in this population. METHODS: This study employed a cross-sectional design for psychometric validation. The English BAT underwent cultural adaptation according to Beaton' s cross-cultural adaptation framework to develop the BAT-C. A convenience sampling strategy was utilized to recruit 310 cancer patients with breakthrough pain from four tertiary hospitals in Hebei Province, with data collected to examine the psychometric properties (reliability and validity) of the BAT-C. RESULTS: Pre-test analysis revealed no significant ceiling or floor effects. The BAT-C comprises nine items organized into two dimensions-Severity and Impact of Breakthrough Pain, Onset Characteristics and Medication Effectiveness-alongside five open-ended items. Item-level content validity indices (I-CVI) ranged from 0.833 to 1.000, while the scale-level content validity index (S-CVI/Ave) reached 0.976. Exploratory factor analysis extracted two common factors explaining 82.521% of the cumulative variance. Confirmatory factor analysis confirmed acceptable model fit, with indices as follows: χ²/df = 1.733, RMSEA = 0.061, CFI = 0.988, TLI = 0.983, IFI = 0.988, and GFI = 0.953. Convergent validity was confirmed by composite reliability (CR) values of 0.927 and 0.900, and average variance extracted (AVE) values of 0.724 and 0.648. The scale demonstrated a Cronbach' s α of 0.869 (95% CI: 0.85-0.89, SE: 0.012), with dimension-specific coefficients of 0.937 and 0.861. McDonald' s ω was 0.947, with a hierarchical ω of 0.675; the Spearman-Brown coefficient was 0.828. Known-groups validity analysis indicated that, after controlling for confounding variables, the BAT-C significantly differentiated patients across ECOG performance statuses (P < 0.05, partial η² = 0.021). CONCLUSION: The BAT-C exhibited robust psychometric properties in this sample, providing preliminary support for its clinical utility as an assessment instrument for breakthrough pain in Chinese cancer patients; however, further validation is warranted in larger and more diverse populations.
Health Qual Life Outcomes
· 2025 Nov · PMID 41188969
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OBJECTIVE: To develop algorithms mapping the Functional Assessment of Cancer Therapy-General Scale (FACT-G) onto the EuroQol 5-Dimension 5-level (EQ-5D-5 L) and the Short-Form Six-Dimension version 2 (SF-6Dv2) for patien...OBJECTIVE: To develop algorithms mapping the Functional Assessment of Cancer Therapy-General Scale (FACT-G) onto the EuroQol 5-Dimension 5-level (EQ-5D-5 L) and the Short-Form Six-Dimension version 2 (SF-6Dv2) for patients with breast or colorectal cancers. METHODS: An online survey was conducted to collect responses to FACT-G, EQ-5D-5L, and SF-6Dv2 from cancer patients in Quebec, Canada (N = 202). Linear models including ordinary least squares (OLS), Censored Least Absolute Deviations (CLAD), the robust MM-estimator model (MM), as well as mixture models including two-part model (TPM), and beta-based mixture (betamix) model were used. Mean absolute error (MAE), root mean squared error (RMSE), R2, Bayesian information criteria (BIC), and limits of agreement (LOA) calculated using the five cross-validation to assess the predictive ability of the models. Furthermore, the distribution of observed versus predicted values was assessed using Bland-Altman plot. RESULTS: Based on RMSE and MAE, mixture models better performed than linear models. The betamix model with truncation that included domains and squared terms was the best-performing algorithm for EQ-5D-5 L (MAE = 0.0518, RMSE = 0.0744, R2 = 46.40%, and LOA=-0.166 to 0.165) and SF-6Dv2 (MAE = 0.1375, RMSE = 0.1764, R2 = 35.32%, and LOA=-0.356 to 0.337). EQ-5D-5 L and SF-6Dv2 utility scores for better health states and more severe health states were underestimated and overestimated, respectively. CONCLUSION: This study developed robust algorithms to estimate EQ-5D-5 L and SF-6Dv2 utilities from FACT-G. Consistent with the recent literature, the betamix model outperformed all other econometric models considered in this study. This suggests that mixture models generally exhibit higher performance and are the best choice for mapping.
Okech T, Thavorncharoensap M, Chaikledkaew U
… +4 more, Omondi GP, Nyokabi P, Thumbi SM, Thakkinstian A
Health Qual Life Outcomes
· 2025 Nov · PMID 41185031
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PURPOSE: Malaria remains a major public health issue, especially for children under five, yet health-related quality of life (HRQoL) data needed for cost-effectiveness analyses are limited. This study assesses malaria’s...PURPOSE: Malaria remains a major public health issue, especially for children under five, yet health-related quality of life (HRQoL) data needed for cost-effectiveness analyses are limited. This study assesses malaria’s impact in Kenyan children and examine how different EQ-5D value sets affect utility estimates. METHODS: A cross-sectional study was conducted in western Kenya. From June to September 2024, caregivers completed the proxy-reported EQ-5D-5L questionnaire. In the absence of a Kenyan value set, utility scores were estimated using both Ethiopian, Ugandan, and Dutch value sets. Differences across value sets were assessed using the Friedman test, while factors associated with utility scores were identified using Tobit regression. RESULTS: Of the 95 children studied, 45 had uncomplicated malaria and 50 had severe malaria. The most affected EQ-5D-5L domains were pain/discomfort and usual activity. For uncomplicated malaria, the median (interquartile) utility scores were 0.82 (0.86) using the Ethiopian value set, 0.59 (1.29) using the Ugandan value set, and 0.73 (0.98) using the Dutch value set. For severe malaria, the median (interquartile) utility scores were lower: 0.30 (1.21) for the Ethiopian, -0.13 (1.44) for the Ugandan, and 0.09 (0.96) for the Dutch value sets, respectively. The differences across these value sets were statistically significant. Vaccination status and severity of malaria were found to be significant determinants of utility scores. CONCLUSION: Malaria considerably reduces children’s HRQoL. The choice of value set has a significant influence on utility estimates, potentially affecting the cost-effectiveness analyses of malaria interventions. These findings underscore the need for Kenyan-specific value set to reflect preference of the population.
Angyal MM, Pangestu S, Lakatos PL
… +2 more, Brodszky V, Rencz F
Health Qual Life Outcomes
· 2025 Oct · PMID 41174781
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OBJECTIVES: This study aimed to assess the psychometric properties of the ICEpop CAPability measure for Adults (ICECAP-A) in patients with coeliac disease (CD) and compare its performance with EQ-5D-5L. METHODS: An onlin...OBJECTIVES: This study aimed to assess the psychometric properties of the ICEpop CAPability measure for Adults (ICECAP-A) in patients with coeliac disease (CD) and compare its performance with EQ-5D-5L. METHODS: An online cross-sectional survey was conducted among 312 adult patients with CD in Hungary, who completed both the ICECAP-A and EQ-5D-5L. Psychometric properties assessed included distributional characteristics, convergent validity with the Gastrointestinal Symptom Rating Scale (GSRS), Satisfaction with Life Scale (SWLS), and known-group validity. RESULTS: Mean age was 35.8 years (range: 18-80), and 70.2% were female. On the ICECAP-A, 51% (attachment) to 81% (stability) of patients reported limitations, while on the EQ-5D-5L, 2% (self-care) to 41% (pain/discomfort) reported problems. Ceiling effect was not observed for the ICECAP-A (6.7%), but reached 38.8% for EQ-5D-5L. The mean index value was 0.85 for the ICECAP-A and 0.92 for the EQ-5D-5L. ICECAP-A correlated strongly with SWLS (r=0.698), moderately with EQ-5D-5L (r=0.551) and weakly with GSRS (r=-0.284). Both the ICECAP-A and EQ-5D-5L were able to differentiate between known groups based on general health status and relevant clinical variables (e.g. symptoms, comorbidities, duration on gluten-free diet and adherence to it); however, the EQ-5D-5L typically showed somewhat larger effect sizes. CONCLUSION: This study is the first to validate ICECAP-A in patients with CD, demonstrating good psychometric performance, including strong convergent and known-group validity. Its ability to capture broader aspects of well-being supports its use as a valuable tool in outcome assessments for this patient population.
Kleppang AL, Hagquist C, Stea TH
… +4 more, Leonhardt M, Bonsaksen T, Lien L, Steigen AM
Health Qual Life Outcomes
· 2025 Oct · PMID 41174604
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BACKGROUND: The use of screens, especially mobile devices like tablets and smartphones has increased over the last years and have become an integral to daily life. Adolescents today spend a lot of time using screens both...BACKGROUND: The use of screens, especially mobile devices like tablets and smartphones has increased over the last years and have become an integral to daily life. Adolescents today spend a lot of time using screens both at school and outside school. Identifying possible associations between gaming, social media use and quality of life (QoL) may inform the development of public health guidelines targeting adolescent behaviour. The purpose of this study is to examine the association between gaming, social media use and quality of life (QoL) among adolescents, and whether sex, spending time with friends or psychological distress moderate these associations. METHODS: This study was based on cross-sectional data from the Trøndelag Health study (Young-Hunt4), collected in 2017-2019. The target group comprised 8066 adolescents (13-19 years). QoL was measured with the Norwegian version of the Inventory of Life Quality (ILC). Electronic media use was measured using the two variables social media use and gaming. Multiple linear regression was used to analyse the association between social media use, gaming, and QoL. RESULTS: Results showed a negative association between gaming (> 3 h per day) after school and quality of life (b = -0.26) and social media use (> 3 h per day) after school and quality of life (b = -0.20). Similar negative associations were observed between more time spent on gaming (> 3 h per day) during weekends and quality of life (b = -0.33) and more time spent on social media (> 3 h per day) during weekends and quality of life (b = -0.16). An interaction effect was observed between sex and social media use (after school), between sex and gaming (after school and during weekends), and between psychological distress and gaming during weekends. CONCLUSIONS: More than three hours spent on gaming or social media per day, both during weekdays and weekends, was negatively associated with QoL. Sex moderated these associations; however, for social media use this was shown only after school. Additional research is needed to further explore these associations.
Möllerstrand A, Winterling J, Kottorp A
… +1 more, Jervaeus A
Health Qual Life Outcomes
· 2025 Oct · PMID 41168763
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BACKGROUND: Resilience is defined as the ability to adapt to adversity, most widely assessed with the self-reported questionnaire Connor-Davidson resilience scale (CD-RISC). While previous studies have demonstrated CD-RI...BACKGROUND: Resilience is defined as the ability to adapt to adversity, most widely assessed with the self-reported questionnaire Connor-Davidson resilience scale (CD-RISC). While previous studies have demonstrated CD-RISC psychometrically sound, it has not yet been validated in a young Swedish population. Therefore, the aim was to evaluate validity evidence based on test content, response processes and internal structure of the Swedish CD-RISC-25 and the 10-item combination among adolescents and young adults. METHODS: This study is divided into two phases. To ensure validity based on test content eight think-aloud interviews were conducted in phase 1. The results guided refinements prior to phase 2. In phase 2, 1500 16-30-year-old individuals, randomly sampled from the general population to participate by completing an online questionnaire. A Rasch rating scale model analysis was performed. RESULTS: Think-aloud interviews identified difficult wordings in two items, clarified in the survey before phase 2. The Rasch analysis (n = 325) indicated that the response categories were well-functioning, and local independence was demonstrated among all items. Six items in CD-RISC-25 and one item in CD-RISC (10 items) displayed misfit to the chosen model. The iterative process resulted in shortened 19- and 9-item versions. Person-response validity and unidimensionality were acceptable for the shortened CD-RISC (9 items). No floor or ceiling effects were detected. Person-separation index showed that both versions could differentiate between three different levels of resilience in the sample. Differential item functioning (DIF) was observed in one item related to gender in CD-RISC (9 items). In shortened CD-RISC-25 DIF was found in five items related to gender and in two items related to age. CONCLUSIONS: When used in a young Swedish population, validity evidence based on test content of CD-RISC is lacking due to difficult wordings and may benefit from additional clarification regarding two items. Shortened versions of CD-RISC (19- and 9-item combinations) demonstrated generally acceptable validity evidence based on response processes and internal structure, but only CD-RISC in the 10-item combination exhibited unidimensionality and met set criteria for person-response validity. For assessing resilience in a young Swedish population, CD-RISC in the 10-item combination appears to be more suitable.
Shiroiwa T, King MT, Campbell R
… +4 more, Murata T, Shimozuma K, Fukuda T, Norman R
Health Qual Life Outcomes
· 2025 Oct · PMID 41163230
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PURPOSE: The Functional Assessment of Cancer Therapy General (FACT-G) questionnaire is frequently used to assess health-related quality of life (HRQOL) in cancer patients. However, data obtained using the FACT-G cannot b...PURPOSE: The Functional Assessment of Cancer Therapy General (FACT-G) questionnaire is frequently used to assess health-related quality of life (HRQOL) in cancer patients. However, data obtained using the FACT-G cannot be directly used to calculate quality-adjusted life years (QALYs). The newly developed FACT Eight Dimensions (FACT-8D) is a preference-based measure that generates health utilities scores from 9 of the 27 FACT-G items, representing eight HRQOL domains (Nausea, Pain, Fatigue, Sleep, Work, Worry, Sadness, Support from family/friends). This study aimed to create a Japanese FACT-8D value set. METHODS: A cross-sectional online survey of the Japanese general population recruited participants via a Japanese online panel, quota sampled by age (≥ 18 years) and sex. FACT-8D valuation data were collected with a discrete choice experiment. The valuation task required each participant to consider 16 pairs of hypothetical health states, randomly assigned per participant from 800 choice-sets. Preference weights were obtained from conditional logit models by dividing estimated HRQOL coefficients by the life duration coefficient. RESULTS: Data from 2320 participants were used to assess sample representativeness and estimate the Japanese value set. All preference weights other than Worry Level 2 were negative and increased in absolute terms in progressively higher levels of adverse HRQOL impact. The most influential domains for health utilities were Pain and Nausea, followed by Work problems. Fatigue, Sleep, Support, Sadness, and health Worry had moderate influences on health utilities. The lowest score, for the pit state [55555555], was − 0.60. This value is much lower than that of the EORTC QLU-C10D pit state [4444444444], -0.22. Health states were consistently scored higher in the USA, Australia and the UK than in Japan. Canadian health states are generally lower than for Japan, but not universally so. CONCLUSIONS: We established the Japanese FACT-8D value set based on the internationally common protocol. The value set provides another option for quantifying health utilities for cancer outcomes. This contributes to improving the feasibility of deriving health utilities from the widely used FACT-G.
Hoque SS, Ahern S, O'Connell HE
… +1 more, Ruseckaite R
Health Qual Life Outcomes
· 2025 Oct · PMID 41163031
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BACKGROUND: Women undergoing pelvic floor procedures (PFPs) to treat their pelvic floor disorder (PFD) may experience pain, affecting their health-related quality of life. Current patient-reported outcome measures (PROMs...BACKGROUND: Women undergoing pelvic floor procedures (PFPs) to treat their pelvic floor disorder (PFD) may experience pain, affecting their health-related quality of life. Current patient-reported outcome measures (PROMs) assess pain but are not specific to PFD post-surgery. This study was part of developing a new pain-specific PROM for women following PFP, aimed to (1) refine an existing conceptual framework to better understand post- post-PFP in women, (2) draft potential items, and (3) develop a consensus set of items for the new measure to ensure content validity. METHODS: A mixed-methods approach was used to address the aim in three phases: (1) refining an existing conceptual framework for post-PFP pain based on feedback from semi-structured interviews with 16 women, (2) drafting potential items based on the revised framework, and (3) conducting an online two-round Delphi survey with 17 experts ranked to rank, review items, then produce a consensus set. RESULTS: The interviews conducted identified key attributes of pain that need to be addressed in the new pain instrument for PFP. From the interviews, 114 items were drafted under eight framework domains, and then presented to a panel in the Delphi survey. After two Delphi rounds, 35 items were finalised, with 11 equally merged or deleted, resulting in a final set of 35 items. CONCLUSION: This is the first study to develop a set of items for the new pain measure based on the experiences and expertise of women and clinicians. Inclusion of the items can offer valuable insight into pain after PFP.
Yiu HHE, Chow LH, Au CCL
… +10 more, Deng EK, Zhao Z, Wei Y, Lee KJ, Huang C, Yang Y, Kang W, Petrou S, Madan J, Chan EW
Health Qual Life Outcomes
· 2025 Oct · PMID 41131580
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BACKGROUND: To investigate the cognitive experiences of completing composite time trade-off (C-TTO) and discrete choice experiment (DCE) tasks for the valuation of the Chinese Short Warwick-Edinburgh Mental Well-being Sc...BACKGROUND: To investigate the cognitive experiences of completing composite time trade-off (C-TTO) and discrete choice experiment (DCE) tasks for the valuation of the Chinese Short Warwick-Edinburgh Mental Well-being Scale (C-SWEMWBS) in Hong Kong in order to inform an appropriate preference elicitation protocol for this population. METHODS: Eighteen think-aloud interviews employing concurrent and retrospective think-aloud techniques were conducted with Cantonese-speaking adult members of the general population. Each participant completed five C-TTO and five DCE tasks with tailor-made C-SWEMWBS states. Interview transcripts were transcribed verbatim, translated into English, and analysed thematically to identify patterns in participants' thoughts and understanding during task completion. RESULTS: Participants generally found the C-TTO and DCE tasks manageable. Four themes were identified that reflected participants' experiences: (1) Interview design and structure, bringing attention to potential refinements in presentation and instructions; (2) Representation of items and levels, illustrating participants' comprehension of the different C-SWEMWBS items and levels; (3) Influences on decision-making, identifying personal and external factors that shaped participant's decisions; and (4) Appropriateness of measures, reflecting participant's experiences in imagining and deriving utility values for mental well-being states. CONCLUSION: Despite highlighting areas that could be refined to minimise unnecessary cognitive burden, findings indicate that the design of the C-TTO and DCE tasks is both feasible and appropriate for the preference elicitation of C-SWEMWBS states in Hong Kong. This provides the basis for conducting a large-scale study to derive a preference-based value set for the C-SWEMWBS in Hong Kong for economic evaluations of interventions aimed at improving public mental well-being.
Fischer G, Hock U, Schwegler V
… +4 more, Buchmann A, Gruber E, Gietl A, Riese F
Health Qual Life Outcomes
· 2025 Oct · PMID 41121253
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OBJECTIVE: Our objective was to study health state appraisals in healthy older Swiss with a focus on health deficits typically associated with dementia. We also aimed to elucidate the congruency of self-ratings of health...OBJECTIVE: Our objective was to study health state appraisals in healthy older Swiss with a focus on health deficits typically associated with dementia. We also aimed to elucidate the congruency of self-ratings of health states with proxy-ratings by possible future surrogate decision-makers. METHODS: This is a single-center, cross-sectional survey among a convenience sample of pairs of healthy older adults and their possible future surrogate decision-makers. Following a States Worse Than Death (SWD) approach, participants were asked to appraise health deficit states in relation to death both for themselves and for their dyadic partners. RESULTS: The final sample consisted of 248 participants, i.e. 124 pairs of healthy older adults (62.1% male; mean age: 71.6ys (SD: 10.5ys)) and their possible future surrogate decisionmakers (mostly spouses or children). Of the 17 health states included in the survey, eleven were rated as equal or worse than death by more than half of healthy older adults. Similarly, ten health states were rated as equal or worse than death by more than half of possible future surrogate decision-makers. Overall, there was good - and higher than random - congruency between ratings of dyadic partners. DISCUSSION: Participants of our study preferred death over living with various types of health impairments to a striking extent, particularly those associated with dementia. There was a good consistency of health state appraisals between dyadic partners which could translate into consistent decision-making - in case proxy decision-making were to become necessary. The use of patient-centered health measures such as SWD approaches may aid goals-of-care discussions, facilitate end-of-life communications and thus improve healthcare decision-making. Future research should investigate how SWD appraisals change over time and with deterioration of health and how they depend on societal acceptance of health impairments.
Health Qual Life Outcomes
· 2025 Oct · PMID 41121167
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OBJECTIVE: Despite the well-documented prevalence of sleep problems in the general population and their associations with significant health consequences that compromise quality of life, comprehensive investigations of m...OBJECTIVE: Despite the well-documented prevalence of sleep problems in the general population and their associations with significant health consequences that compromise quality of life, comprehensive investigations of multidimensional sleep health in Hong Kong Chinese adults remain limited. This study aimed to characterize multidimensional sleep health in Chinese adults and evaluate its association with health-related quality of life (HRQL). METHODS: Data were collected through a cross-sectional study of a population-representative sample in the Hong Kong community. The Short-Form-12 Health Survey version 2 (SF-12v2), Pittsburgh Sleep Quality Index (PSQI), Nonrestorative Sleep Scale (NRSS), Patient Health Questionnaire, Perceived Stress Scale, and ENRICHD Social Support Instrument were administered. Objective sleep parameters were derived from ActiGraph Link accelerometer data. The composite sleep health score was computed by aggregating the scores of efficiency, regularity, duration, and timing by actigraphy measures and the subjectively reported satisfaction and alertness by the PSQI and NRSS. Group comparison and multiple linear regression were performed to examine the association between sleep health and HRQL. RESULTS: A total of 500 adults (66.4% female, 39.1 years old on average) completed the survey. Participants scored 51.56 (46.57, 55.09), 49.69 (43.07, 56.72), and 2.67 ± 1.36 on the physical component summary (PCS) and mental component summary (MCS) of the SF-12v2 and the sleep health composite score, respectively. Individuals with better sleep regularity and sleep health composite scores had higher MCS. After adjusting for sociodemographic and lifestyle characteristics, somatic symptoms, stress, and social support, sleep regularity demonstrated a statistically significant association with MCS (B = 1.38, P = 0.038), while the composite score of sleep health was significantly associated with role physical of PCS (B = 0.46, P = 0.041). CONCLUSIONS: Sleep regularity and a composite score of sleep health were associated with HRQL in Chinese adults, suggesting that targeted interventions to enhance overall sleep health and specific dimensions may yield measurable improvements in population HRQL outcomes.
Health Qual Life Outcomes
· 2025 Oct · PMID 41102722
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BACKGROUND: Health utility measurement is critical for cost-utility analysis (CUA). However, clinical studies often lack direct utility data, and methods of measuring health utility vary across different periods and regi...BACKGROUND: Health utility measurement is critical for cost-utility analysis (CUA). However, clinical studies often lack direct utility data, and methods of measuring health utility vary across different periods and regions, resulting in missing utility information. Mapping, a method employed to infer utility when direct utility data is absent, has been widely applied in recent years but still faces challenges. This systematic review evaluates the current landscape, trends, and limitations of mapping studies and provides recommendations for improving study design and reporting standards. METHODS: A literature search was conducted in PubMed, Web of Science, and the HERC Database of Mapping Studies from 2018 to 2024. The study extracted information from the included studies and performed quality assessments based on existing mapping guidelines. RESULTS: One hundred thirty-one studies were included, 92 focused on Mapping as the primary objective, five were reviews, 13 focused on methodology, and 21 focused on economic evaluation. The source measure, target measure, and models in mapping functions development remain EORTC-QLQ-C30 (n = 13), EQ-5D (n = 79), and OLS (n = 93). Studies now use larger sample sizes and a higher proportion of response Mapping, and model applications have increased in diversity. However, 32 studies still lack conceptual overlap analysis, and only 16 studies with repeated measurements addressed its issue. Additionally, two studies did not report the region of the sample and value set, while 27 had inconsistencies between the two regions. CONCLUSIONS: In the last seven years, mapping studies have improved sample size, model application, and result reporting. However, limitations remain in analysing conceptual overlap, ensuring alignment between the sample and value set regions, and processing repeated measurements. To advance the quality of mapping studies, it is necessary to update mapping guidelines and ensure that all mapping functions are developed in compliance with them.