Health And Quality Of Life Outcomes[JOURNAL]
Sun
200 papers
Updated algorithms for direct and indirect mapping of WHOQOL-BREF to EQ-5D-5L utility scores using data from a multi-provincial Thai general population sample.
Kangwanrattanakul K, Tan YJ
Health Qual Life Outcomes · 2026 Jun · PMID 42231313 · Full text
BACKGROUND: Mapping techniques can estimate EQ-5D-5L utility scores from non-preference-based WHOQOL-BREF responses. A previous Thai study used a reciprocal linear model, but it may not adequately address the left-skewed...
BACKGROUND: Mapping techniques can estimate EQ-5D-5L utility scores from non-preference-based WHOQOL-BREF responses. A previous Thai study used a reciprocal linear model, but it may not adequately address the left-skewed distribution of utility scores. This study aimed to develop improved mapping algorithms using alternative regression models that better account for the distributional characteristics of utility scores in the Thai general population. METHODS: A 2022 national survey dataset of paired WHOQOL-BREF and EQ-5D-5L responses (n = 2,000), representative of the Thai general population, was used. Five predictor sets were fitted using eight regression models, including ordinary least squares, Tobit, censored least absolute deviations, generalized linear model (GLM), two-part models, adjusted limited dependent variable mixture model, and beta regression-based mixture model for the direct mapping approach; and multinomial logistic regression (MLOGIT) for the indirect mapping approach. The best-performing models were identified based on the lowest ten-fold cross-validated mean absolute error (MAE) and root mean square error (RMSE), together with minimal prediction bias from graphical assessment. RESULTS: The GLM-poisson model, fitted using a predictor set comprising age, general WHOQOL-BREF items, and selected Physical Health, Psychological Health and Environment items, emerged as the best-performing model, with predictions closely aligning with observed values. A MLOGIT model performed less well, with overpredictions for utility scores > 0.6. CONCLUSIONS: This study advances the literature on mapping WHOQOL-BREF to EQ-5D-5L by providing updated algorithms for estimating EQ-5D-5L utility scores from WHOQOL-BREF responses in the Thai general population. The improved algorithms offer more accurate predictions, supporting their use in health economic analyses in Thailand.
Proxy reports on the EQ-5D-5L in residential aged care facilities: a validation study.
Dao-Tran TH, Keramat SA, Etherton-Beer C … +6 more , Page A, Naganathan V, Mangin D, Potter K, Hilmer S, Comans T
Health Qual Life Outcomes · 2026 May · PMID 42218441 · Full text
BACKGROUND: The EuroQol 5-Dimension 5-Level questionnaire (EQ-5D-5L) is a common scale to measure health-related quality of life in residential aged care facilities. Many residents are unable to answer the scale independ...
BACKGROUND: The EuroQol 5-Dimension 5-Level questionnaire (EQ-5D-5L) is a common scale to measure health-related quality of life in residential aged care facilities. Many residents are unable to answer the scale independently; therefore, a proxy usually responds on the residents' behalf. The quality of data reported by proxy is not well understood. This study examines the psychometric properties, including convergent validity, known-group validity, interrater reliability, and responsiveness of proxy reports on the EQ-5D-5L. METHODS: The study used data from 281 residents participating in a 12-month deprescribing randomised control trial in Australia. Interview-administered questionnaires were used for data collection. Convergent validity, known-group validity, and responsiveness were evaluated using a hypothesis-testing approach. Interrater reliability was assessed by calculating the intra-class correlation coefficient, weighted Cohen's kappa coefficient, and generating Bland-Altman plots and bar charts. RESULTS: Proxy (staff) reports on EQ-5D-5L were significantly associated with residents' cognitive functioning, physical functioning, neuropsychiatric behaviours and frailty. Proxy (staff) reports on EQ-5D-5L were significantly different across groups of patients with varying levels of cognitive and physical functioning, frailty and neuropsychiatric behaviours. Changes over 12 months in residents' cognitive and physical functioning, frailty and neuropsychiatric behaviours were associated with changes in proxy reports on EQ-5D-5L. Interrater correlation at the total score measured by the intra-class correlation coefficient was 0.744 at baseline and 0.664 at 12 months (moderate). Interrater correlation at the domain level, measured by weighted Cohen's kappa, ranged from 0.206 to 0.432 (minimal to weak). CONCLUSION: Proxy reports on the EQ-5D-5L demonstrated satisfactory convergent validity, known-group validity, and responsiveness. Interrater reliability was moderate at the total utility score but poor at the domain level. Proxy reports on the EQ-5D-5L can serve as an alternative method to measure residents' HRQOL. However, data from proxy reports at the domain level is not recommended for future research and practice evaluation. CLINICAL TRIAL REGISTRATION: This study is part of a large deprescribing trial known as 'Opti-Med', which has been registered with the Australian New Zealand Clinical Trials Registry (Registry number: ACTRN12613001204730, dated 4 November 2013) and the World Health Organisation Clinical Trials Registry Platform (the universal trial number: U1111-1148-6094).
Association between health-related quality of life and medication discrepancies: a cross-sectional study of older Chinese adults with type 2 diabetes mellitus.
Tan J, Zhao M, Shao R … +1 more , Yan J
Health Qual Life Outcomes · 2026 May · PMID 42216205 · Full text
BACKGROUND: Health-related quality of life (HRQoL) is a widely used indicator for assessing individuals' subjective perception of life quality and population health status. It evaluates the multiple dimensions related to...
BACKGROUND: Health-related quality of life (HRQoL) is a widely used indicator for assessing individuals' subjective perception of life quality and population health status. It evaluates the multiple dimensions related to health, including physical, psychological, and social aspects, and may be associated with self-management behaviors and treatment adherence in patients with chronic diseases. This study examines the association between HRQoL and medication discrepancies (MDs) among older adults with type 2 diabetes mellitus (T2DM) during the transition from hospital to home care. METHODS: The cross-sectional survey was conducted in Baoding City, Hebei Province, China. Data from patients (N = 552) were collected using a questionnaire that included the Chinese version of the MOS 36-Item Short Form Health Survey, a sinicized and modified version of the Medication Discrepancy Tool, and a general information form. Descriptive statistics, logistic regression models, and generalized additive models were employed to examine the associations between the variables. RESULTS: The prevalence of MD in the study population was 55.8%. After adjustment for sociodemographic, clinical, and medication-related characteristics, both the Physical Component Summary and Mental Component Summary scores were significantly associated with MD. In the adjusted analyses, the medium-score group showed the highest odds of MD, followed by the high-score group, whereas the low-score group showed the lowest odds. CONCLUSIONS: HRQoL is associated with MD among older adults with T2DM during the post-discharge care transition, with a non-monotonic pattern in which MD prevalence peaks in the moderate HRQoL range. Solely disease severity-based models may overlook the relevance of subjective health perceptions in relation to medication behaviors. These findings suggest that HRQoL warrants consideration in understanding medication safety during care transitions, though the conclusions await confirmation in prospective studies.
Relationship quality among people living with HIV/AIDS: a systematic review and meta-analysis.
Rzeszutek M, Gruszczyńska E, Grabowska M … +2 more , Malinowska P, Sosińska B
Health Qual Life Outcomes · 2026 May · PMID 42185918 · Full text
BACKGROUND: The aim of this systematic review and meta-analysis was to summarize the existing literature on the factors associated with relationship quality among people living with HIV (PLWH). METHOD: A structured liter...
BACKGROUND: The aim of this systematic review and meta-analysis was to summarize the existing literature on the factors associated with relationship quality among people living with HIV (PLWH). METHOD: A structured literature search was performed on APA PsycArticles, ProQuest and PubMed for quantitative, peer-reviewed studies published in English between 1994 and March 2025. Fifteen studies (N = 2579; 78% men, predominantly in serodiscordant couples) met the inclusion criteria and contributed 76 effect sizes, which were categorized as either protective or risk factors for relationship quality among PLWH. A three-level meta-analytic model was employed to address the nested data structure. RESULTS: The pooled effect sizes were comparable for protective factors (r = 0.26, 95% CI [0.08, 0.43]) and risk factors (r = 0.24, 95% CI [0.16, 0.31]), reflecting small-to-moderate effects. Significant heterogeneity was observed at the between-study level, whereas within-study variability was negligible. The only significant moderator was relationship length: the association between protective factors and relationship quality was stronger in longer-term PLWH relationships. CONCLUSION: This review and meta-analysis suggest that, despite the unique context of HIV/AIDS, several correlates of relationship quality may reflect broader patterns observed across populations. The findings improve our understanding of factors associated with psychological well-being among PLWH, particularly given the importance of satisfying romantic relationships for quality of life in this population.
The Uncertainty in Illness Questionnaire (UIQ): development and validation of a clinically oriented measure for patients and caregivers.
Panzeri A, Ghisi M, Rossi AA … +3 more , Spoto A, Vidotto G, Bottesi G
Health Qual Life Outcomes · 2026 May · PMID 42177469 · Full text
OBJECTIVE: The present research aimed to develop and validate the Uncertainty in Illness Questionnaire (UIQ), a self-report tool designed to assess uncertainty in illness (UI) among Italian-speaking patients and caregive...
OBJECTIVE: The present research aimed to develop and validate the Uncertainty in Illness Questionnaire (UIQ), a self-report tool designed to assess uncertainty in illness (UI) among Italian-speaking patients and caregivers. Across three studies, the psychometric properties of the UIQ were rigorously evaluated in large, diverse samples. METHODS & RESULTS: In Study 1, the novel exploratory graph analysis (EGA) revealed a robust four-factor structure - uncertainty about symptoms, treatments, future change, and relationships (optimal stability > .90, negligible cross-loadings). Such structure was then confirmed in Study 2, in an independent sample, through confirmatory factor analysis (CFA) with a hierarchical model with four first-order factors showing good fit (robust RMSEA = 0.065[90% CI: 0.056-0.075]; robust CFI=0.958; robust TLI=0.949; SRMR=0.043). UIQ demonstrated strong reliability, internal consistency, and both convergent and divergent validity. Measurement invariance analyses reached latent means invariance, revealing that UIQ is interpreted equivalently by patients and caregivers, supporting meaningful group comparisons. Following recent methodological guidelines, Study 3 demonstrated the discriminant validity of the UIQ with the Intolerance of Uncertainty Scale-Revised, measuring dispositional intolerance of uncertainty. CONCLUSIONS: The tool's brevity and clarity make it suitable for both clinical and research settings, especially where respondent burden must be minimized. The UIQ addresses an important gap in the Italian context, providing a validated, context-specific measure of UI. Convenience sampling, predominantly female participants (> 85%), cross-sectional design, and lack of clinical subgroup analyses limit generalizability. The tool requires cross-cultural validation beyond Italian-speaking populations. UIQ offers clinicians and researchers a reliable means to assess and address UI, ultimately supporting tailored interventions to improve psychological health in medical contexts.
An exploratory analysis of interaction effects in EQ-5D valuation using saturated EQ VAS datasets from the Netherlands, the United Kingdom, and China.
Yang Z, Ramos-Goñi JM, Kind P … +1 more , Busschbach J
Health Qual Life Outcomes · 2026 May · PMID 42169114 · Full text
OBJECTIVES: To examine whether interaction terms improve predictive accuracy in EQ-5D valuation models using fully saturated datasets, and to identify parsimonious interaction specifications that balance model performanc...
OBJECTIVES: To examine whether interaction terms improve predictive accuracy in EQ-5D valuation models using fully saturated datasets, and to identify parsimonious interaction specifications that balance model performance and feasibility. METHODS: A secondary analysis of three saturated EQ-5D visual analogue scale (VAS) datasets was conducted: EQ-5D-3 L from the Netherlands and the United Kingdom, and EQ-5D-5 L from China. The analysis followed three steps. First, main-effects models were estimated as a reference and compared with models including all second-order interaction terms. Second, the contribution of interaction terms was assessed by examining how model performance metrics (RMSE, R², AIC, and BIC) changed with the number of interaction terms included, and by ranking individual interaction terms according to their impact on RMSE across datasets. Third, parsimonious models using summary interaction terms were evaluated to capture key non-additive effects. RESULTS: Including interaction terms consistently improved predictive performance across all three datasets, although absolute improvements were modest. Interaction effects were strongest for combinations of severe health problems, and all interaction coefficients were positive, consistent with diminishing marginal utility. Interactions involving pain/discomfort and anxiety/depression were among the most influential across datasets. Parsimonious specifications incorporating summary interaction terms-N3D1 for EQ-5D-3 L and N45D1 for EQ-5D-5 L-captured much of the performance gain achieved by fully interacted models. CONCLUSIONS: Interaction effects are empirically detectable and systematically improve model performance in EQ-5D valuation when saturated data are available. Summary interaction terms provide a practical approach to capturing key non-additive effects while maintaining model parsimony.
Latent profile analysis identifying symptom clusters of fatigue, sleep disturbance, pain, and anxiety and their associations with health-related quality of life and self-efficacy in patients undergoing peritoneal dialysis: a cross-sectional study.
Zeng Y, Zhang D, Fang Y … +3 more , Xiao M, Ji C, Chen X
Health Qual Life Outcomes · 2026 May · PMID 42168996 · Full text
BACKGROUND: Peritoneal dialysis patients experience a high burden of co-occurring symptoms that impair health-related quality of life and self-efficacy. This study applied latent profile analysis to identify distinct sym...
BACKGROUND: Peritoneal dialysis patients experience a high burden of co-occurring symptoms that impair health-related quality of life and self-efficacy. This study applied latent profile analysis to identify distinct symptom profiles of fatigue, sleep disturbance, pain, and anxiety and to examine factors associated with profile membership and their associations with patient-reported outcomes. METHODS: In this cross-sectional study conducted from January to October 2025, 308 peritoneal dialysis patients from a tertiary hospital in Shantou, China, completed the Multidimensional Fatigue Inventory-20, Athens Insomnia Scale, Numerical Rating Scale, Zung Self-Rating Anxiety Scale, 36-Item Short Form Health Survey, and Chronic Disease Self-Efficacy Scale. Latent profile analysis was performed using Mplus 8.3. Factors associated with profile membership were examined using exploratory three-step analyses (R3STEP), and differences in health-related quality of life and self-efficacy across profiles were compared using the BCH approach. RESULTS: Three profiles were identified: Low symptom distress (n = 182, 59.1%), Moderate symptom distress (n = 57, 18.5%), and High symptom distress (n = 69, 22.4%). In exploratory R3STEP analyses accounting for classification uncertainty, higher phosphorus was associated with greater odds of membership in the moderate and high symptom distress profiles relative to the low symptom distress profile, while BMI showed a borderline association. BCH analyses further showed significant differences across profiles in physical and mental health-related quality of life and self-efficacy, with the high symptom distress profile showing the poorest outcomes. CONCLUSIONS: Three clinically meaningful symptom profiles exist among peritoneal dialysis patients. Higher symptom distress was associated with poorer health-related quality of life and lower self-efficacy, and exploratory three-step analyses suggested that phosphorus may be an exploratory correlate of membership in the moderate and high symptom distress profiles. These findings suggest that symptom cluster-based screening may help identify peritoneal dialysis patients with greater supportive care needs and may inform future multidisciplinary management strategies.
Health-related quality of life inequity and influencing factors among urban and rural elderly hypertensive populations: baseline survey of the Northern China Lifestyle Medicine Cohort.
Li H, Miao Y, Shen Z … +7 more , Zhu D, Zhang J, Sun Y, Zhou F, Zhang J, Ma L, Hua B
Health Qual Life Outcomes · 2026 May · PMID 42157200 · Full text
BACKGROUND: There is a lack of broader, systematic research examining differences in health-related quality of life (HRQoL) among elderly hypertensive populations across urban and rural settings. This study evaluates the...
BACKGROUND: There is a lack of broader, systematic research examining differences in health-related quality of life (HRQoL) among elderly hypertensive populations across urban and rural settings. This study evaluates these disparities and identifies key influencing factors among urban and rural settings. METHODS: Data were extracted from the Northern China Lifestyle Medicine Cohort (NCLM-Cohort. REGISTRATION NUMBER: ChiCTR2500096200; Registration date:2025/01/20) study, which covers four Provinces. Tobit regression and logistic regression analyses were used to assess the relationships between variables and Health Utility Value (HUV), Visual Analogue Scale (VAS) scores, and reported EQ-5D-5L (5L) issues reported in urban and rural participants. The Shapley value decomposition method, which is based on logistic regression analysis, was employed to quantify the weights of each influencing factor. Propensity score matching (PSM) was used to minimize potential confounding bias. RESULTS: A total of 7,062 participants (21.24% urban and 58.16% female) were included. The urban HUV (median 1.000) was greater than the rural HUV (median 0.942), and reported fewer health issues. After PSM, there were net differences in urban-rural HUV (0.009) and reported self-care (7.63%), usual activities (3.37%), and pain/discomfort issues (11.57%). Physical activity was the protective factor for HRQoL and contributed most significantly to decline reporting 5L issues. Medication adherence and the duration of hypertension had conflicting effects on urban-rural HRQoL. Urban HRQoL was driven primarily by clinical and health factors and educational factors, whereas rural HRQoL was influenced predominantly by modifiable health behaviors and economic factors. CONCLUSIONS: Compared with rural counterparts, urban participants demonstrated superior HRQoL and fewer health issues, indicating a significant urban-rural health disparity. To address this gap, policymakers should implement differentiated intervention strategies: Urban interventions should integrate mental health services into primary care and strengthen hypertension-related health literacy. For rural populations, policies must prioritize infrastructure development and economic subsidies, and healthcare providers should support them in maintaining adequate sleep and good medication adherence.
Living with Cochlear Implants (LivCI): development and validation of a new patient-reported outcome measure (PROM) of personal factors associated with living with cochlear implants.
Hughes SE, Sucher CM, Laird E … +1 more , Ferguson MA
Health Qual Life Outcomes · 2026 May · PMID 42135762 · Full text
BACKGROUND: There is a paucity of research that considers personal factors that have recently been shown to be important to those who use cochlear implants (CI). This study aimed to develop the Living with Cochlear Impla...
BACKGROUND: There is a paucity of research that considers personal factors that have recently been shown to be important to those who use cochlear implants (CI). This study aimed to develop the Living with Cochlear Implants (LivCI) questionnaire, a patient-reported outcome measure (PROM) of personal factors important to living with cochlear implants, and evaluate its psychometric properties using Rasch and classical test theory (CTT) analyses. METHODS: Multi-phase, prospective observational design. CI candidates and recipients (n = 267) completed a 54-item draft LivCI. The item pool was assessed for Rasch model fit, including overall scale and item fit, local dependency, rating scale functioning, differential item functioning (DIF), reliability and unidimensionality. Results guided iterative refinements to produce a definitive LivCI. LivCI scales were evaluated in a second sample (n = 145) using CTT for internal consistency reliability (Cronbach's alpha) and criterion and construct validity. A hypothesis testing approach, comparing LivCI scores with participants' scores on five comparator PROMs, was used. RESULTS: We constructed a 22-item version of the LivCI comprising four unidimensional subscales: (1) function and participation; 2) psychosocial and wellbeing; 3) stigma; and 4) device aesthetics and management. Scales represented domains of a co-developed conceptual framework. All met the Rasch model requirements of fit, unidimensionality, local item independence and item invariance for age and gender (DIF), except the Device Aesthetics and Management scale with one dependent item pair. A 4-point response category structure was adopted to address threshold disordering. Person separation reliability (range = 0.57 to 0.85) and internal consistency reliability (Cronbach's [Formula: see text] = 0.64 to 0.94) were acceptable with exception of the Device Aesthetics and Management Scale. The LivCI was highly correlated (r > 0.6) with PROMs considered to measure similar constructs, sufficient evidence of criterion validity (Pearson correlation value range = 0.62 to 0.75, 100% of a priori hypotheses met). Construct validity was partially supported with 54% (15/28) of predefined hypotheses confirmed. CONCLUSIONS: The 22-item LivCI, comprising four standalone scales, met Rasch model requirements for unidimensionality, invariance, local independence and item fit. With further validation, the LivCI has potential for implementation in routine care and as a research tool. (350 words).
Exploring health system factors related to the quality of life of people with (a history of) cancer: a rapid review.
Engelaar M, van der Heide I, Bos N … +18 more , Schäfer W, Dantas C, Pinnavaia L, Apolone G, Brunelli C, Caraceni A, Couespel N, Garin O, Groenvold M, Kaasa S, Ciliberto G, Lombardo C, Pietrobon R, Pravettoni G, Sirven A, Vachon H, Gilbert A, Rademakers J
Health Qual Life Outcomes · 2026 May · PMID 42129865 · Full text
BACKGROUND: Cancer is a leading cause of death in Europe, and it has a major impact on the quality of life of those affected by it. Quality of life is a multifaceted concept affected by a range of factors, namely individ...
BACKGROUND: Cancer is a leading cause of death in Europe, and it has a major impact on the quality of life of those affected by it. Quality of life is a multifaceted concept affected by a range of factors, namely individual, organisational, and national health system factors. Despite existing research on individual and organisational aspects, little is known about the association between health system factors and quality of life. Therefore, the aim of this study is to explore the health system factors that relate to the quality of life of people with (a history of) cancer and to identify potential gaps in literature. METHODS: We conducted a rapid review to gain insight into what is known in scientific literature regarding health system factors that are related to the quality of life of people with (a history of) cancer. We complemented our findings with a broad search in various grey literature databases. RESULTS: The rapid review included 31 studies, which were supplemented by six health policy reports and one book chapter. Based on the review of scientific and grey literature, we constructed a list of ten health system factors that may relate to the quality of life of people with (a history of) cancer. CONCLUSIONS: We compiled a list of ten health system factors that may relate to the quality of life of people with (a history of) cancer. Seven factors were identified from and described in scientific literature. Three factors, namely 'policy and vision', 'research and innovation', and 'quality of care delivery', were identified in grey literature. The relation of these health system factors needs to be studied further to better understand what may impact on the quality of life of people with (a history of) cancer.
Patient-reported outcome measures developed for non-cystic fibrosis bronchiectasis may be applied to cystic fibrosis bronchiectasis.
Flume PA, Nordyke RJ, Han D … +3 more , Jha A, Nicholson G, Peipert JD
Health Qual Life Outcomes · 2026 May · PMID 42129785 · Full text
BACKGROUND: Bronchiectasis (BE) is a chronic lung disease that impacts health-related quality of life (HRQoL). BE has historically been separated into cystic fibrosis (CF)-related BE (CFBE) and non-CF-related BE (NCFBE [...
BACKGROUND: Bronchiectasis (BE) is a chronic lung disease that impacts health-related quality of life (HRQoL). BE has historically been separated into cystic fibrosis (CF)-related BE (CFBE) and non-CF-related BE (NCFBE [where NCFBE is etiologically heterogeneous or idiopathic]), despite both sharing similar pathophysiology. Patient-reported outcome measures (PROMs) assessing BE symptoms and impacts on HRQoL have largely been developed and validated in NCFBE. This study assessed whether PROMs developed for NCFBE reflect HRQoL experiences of people with CFBE. METHODS: A preliminary conceptual model of symptoms and HRQoL impacts most relevant to people with CFBE was developed based on expert opinion, the content of existing PROMs, and previous qualitative research. Items from 11 existing PROMs were mapped to this preliminary conceptual model. A focus group discussion guide was created from the preliminary conceptual model. US participants aged ≥ 19 years with a self-reported diagnosis of CF and BE were eligible for participation in one of two focus groups (December 2023 or January 2024). Focus groups were recorded and transcribed verbatim, and thematic analysis (ATLAS.ti Web) was used to identify recurring themes from the discussions. Final themes were mapped back to the preliminary conceptual model to identify potential gaps between existing PROMs and relevant HRQoL impacts. RESULTS: A total of 19 people with CFBE participated in the virtual focus groups. Most participants were female (63%) and non-Hispanic White (95%), ranging from 22 to 67 years of age. Focus group discussions revealed five primary themes: Emotional Symptoms, Physical Function, Physical Symptoms, Social Health, and Treatment Burden. A total of 242 unique mentions of BE-related symptoms and impacts on HRQoL were mapped to the model. Generally, concerns about symptoms and HRQoL impacts expressed by participants were consistent with the model. Potential discrepancies included feelings of loss of control, sinusitis, and hemoptysis. Although not included in the model, loss of control likely overlapped with anxiety or treatment burden. Hemoptysis, although raised during focus group discussions, was not captured in the model, but is captured in several PROMs. CONCLUSIONS: Measures developed to assess patient‑reported outcomes in NCFBE may be extended to CFBE, pending cognitive and psychometric validation.
Convergence and divergence between PROMIS global health and EQ-5D-3L in a national population sample.
Lee J, Lim Y, Kim Y … +5 more , Lee MK, Fischer F, Rose M, Kang D, Cho J
Health Qual Life Outcomes · 2026 May · PMID 42121230 · Full text
BACKGROUND: To compare correlation, agreement, and residual patterns between Patient-Reported Outcomes Measurement Information System (PROMIS) Global Health (GH) and EQ-5D-3 L and to identify areas of convergence and div...
BACKGROUND: To compare correlation, agreement, and residual patterns between Patient-Reported Outcomes Measurement Information System (PROMIS) Global Health (GH) and EQ-5D-3 L and to identify areas of convergence and divergence across health domains in a nationally representative Korean population. METHODS: A total of 2,699 adults completed PROMIS GH and EQ-5D-3 L between December 2021 and January 2022. A linear regression model was used to predict EQ-5D-3 L index values from PROMIS physical and mental health T-score. Agreement between predicted and observed EQ-5D values was assessed using intraclass correlation coefficients (ICC) and root mean squared error (RMSE). Residuals between observed and predicted EQ-5D values were examined to detect systematic discrepancies across demographic, clinical subgroups, and EQ-5D domain severity levels. RESULTS: The relationship between PROMIS GH and EQ-5D showed consistent agreement (RMSE = 0.079). Approximately 9.8% of participants showed large discrepancies (absolute residual > 0.1) between observed and PROMIS-predicted EQ-5D values. Divergence was most pronounced in those with mobility, self-care, or usual activities problems, and poor PROMIS Physical Health was the strongest predictor of large discrepancies (Odds ratio = 3.68). CONCLUSIONS: PROMIS GH and EQ-5D-3 L showed overall agreement but also systematic discrepancies across subgroups. Larger differences were observed in individuals with functional limitations, particularly in mobility, self-care, and usual activities domains. These patterns suggest that the two instruments may capture related but not identical aspects of health.
Validation of the ICECAP-O for assessing wellbeing in people with mild dementia in Denmark.
Pedersen EK, Øksnebjerg L, Nielsen TR
Health Qual Life Outcomes · 2026 May · PMID 42121177 · Full text
BACKGROUND: Assessment of wellbeing is essential in the context of chronic diseases. The Investigating Choice Experiments for the Preferences of Older People-Capability Index (ICECAP-O) is a generic wellbeing measure bey...
BACKGROUND: Assessment of wellbeing is essential in the context of chronic diseases. The Investigating Choice Experiments for the Preferences of Older People-Capability Index (ICECAP-O) is a generic wellbeing measure beyond health. We aimed to assess whether ICECAP-O is a valid measure of capability-wellbeing in people with mild dementia by assessing its discriminative and convergent validity. Further, we assessed its feasibility, internal consistency, and test-retest reliability. METHODS: Four quality-of-life (QoL) and wellbeing measures were completed by 123 community-dwelling people with mild dementia. Discriminative validity was assessed by the ability of ICECAP-O to distinguish between levels of QoL, wellbeing, and related variables. Convergent validity was assessed by correlations between ICECAP-O index and domain scores, and the 5-level EQ-5D version (EQ-5D-5L), European Quality of Life visual analog scale (EQ VAS), Engagement and Independence in Dementia Questionnaire (EID-Q), and the World Health Organization Wellbeing Index (WHO-5). The feasibility of ICECAP-O in people with mild dementia was evaluated by missing data analysis. Internal consistency was assessed with Cronbach's α, and test-retest reliability was assessed using intraclass correlation coefficient (ICC). RESULTS: ICECAP-O significantly distinguished between different levels of QoL and wellbeing. Further, ICECAP-O was not affected by sociodemographic characteristics. ICECAP-O index scores were strongly correlated with EQ-5D-5L (ρ = 0.61) and EID-Q (ρ = 0.62), and moderately with WHO-5 (ρ = 0.58) and EQ-VAS (ρ = 0.58). Missing data on ICECAP-O dimensions, ranging from 2% to 3%, indicate good feasibility in people with mild dementia. ICECAP-O demonstrated acceptable internal consistency (α = 0.74) and good test-retest reliability (ICC = 0.86). CONCLUSION: The Danish version of ICECAP-O is a valid and reliable measure of wellbeing in people with mild dementia, and demonstrated acceptable psychometric properties, providing further evidence for its use in this population.
Impact of post-exertional malaise frequency and fatigue in Long COVID patients on health-related quality of life.
Thölking T, Müller F, Riester T … +10 more , Lampe V, Theil LM, Hummers E, Sarpari K, Dopfer-Jablonka A, Happle C, Steffens S, Meier-Maiwald M, Mikuteit M, Schröder D
Health Qual Life Outcomes · 2026 May · PMID 42116095 · Full text
PURPOSE: The aim of this study was to investigate the impact of post-exertional malaise (PEM) frequency and PEM severity on health-related quality of life (HRQoL) among individuals with Long COVID. METHODS: We conducted...
PURPOSE: The aim of this study was to investigate the impact of post-exertional malaise (PEM) frequency and PEM severity on health-related quality of life (HRQoL) among individuals with Long COVID. METHODS: We conducted a cross-sectional online survey including adults in Germany with self-reported Long COVID and PEM. Fatigue severity was assessed with the Fatigue Assessment Scale (FAS), and HRQoL was measured using the EQ-5D-3L (descriptive index and visual analogue scale [EQ-VAS]). Associations between PEM frequency, fatigue, and HRQoL were examined using correlations and non-parametric group comparisons. Multiple linear regression models were fitted to predict HRQoL while controlling for age, sex, employment status, and subjective social status. RESULTS: Higher PEM frequency was associated with significantly lower EQ-5D index scores (ρ = - 0.32, p<.001). PEM severity was also strongly correlated with reduced HRQoL (EQ-5D index: ρ = - 0.43, p<.001). In multivariable regression models, greater fatigue and higher PEM frequency independently predicted poorer HRQoL, even after adjustment for sociodemographic factors. CONCLUSION: Both PEM frequency and PEM severity substantially impair HRQoL in individuals with Long COVID. These findings underscore the clinical relevance of PEM as a key symptom and highlight the need for targeted management strategies to mitigate its impact on daily life. CLINICAL TRIAL NUMBER: German Clinical Trials Register DRKS00026007; registration date: 9 September 2021.
Psychometric evaluation of the Korean version of the Child Oral Health Impact Profile Short Form (COHIP-SF 19): a cross-sectional study.
Song JS
Health Qual Life Outcomes · 2026 May · PMID 42106733 · Full text
BACKGROUND: The Child Oral Health Impact Profile Short Form 19 (COHIP-SF 19) is widely used to assess oral health-related quality of life (OHRQoL). However, its psychometric properties have not been evaluated in Korea. T...
BACKGROUND: The Child Oral Health Impact Profile Short Form 19 (COHIP-SF 19) is widely used to assess oral health-related quality of life (OHRQoL). However, its psychometric properties have not been evaluated in Korea. This study aimed to examine the factor structure of the Korean COHIP-SF 19 and to assess its reliability and validity in schoolchildren. METHODS: Data were obtained from 980 fourth-grade elementary school students (aged 10 years) participating in a 2023 national oral health program. Children completed the COHIP-SF 19 online, and clinical examinations recorded caries, malocclusion, gingivitis, and oral hygiene status. Exploratory and confirmatory factor analyses were performed. Reliability was assessed using Cronbach's alpha, corrected item-total correlations, and test-retest intraclass correlation coefficients (ICC). Convergent and discriminant validity were evaluated using self-rated oral health, perceived treatment need, and clinical findings. RESULTS: Exploratory factor analysis supported a four-factor solution with separation of the self-image subscale. Confirmatory factor analysis showed better fit for the modified model than the original structure. The total score demonstrated excellent test-retest reliability (ICC = 0.905). Cronbach's alpha for the 19 items was 0.729, with higher values in the modified model. Convergent validity was confirmed by correlations with self-rated oral health and treatment need. Discriminant validity was supported: children with caries or malocclusion had lower scores, whereas gingivitis and oral hygiene showed no associations. Gender differences appeared only in the modified model, with girls reporting lower functional well-being and social well-being scores. CONCLUSIONS: The Korean COHIP-SF 19 demonstrated satisfactory psychometric properties in 10-year-old schoolchildren. The modified model showed improved structural validity, higher internal consistency, and better subgroup discrimination, including by gender. These findings support its use in clinical and epidemiological research.
Cultural adaptation and psychometric evaluation of the CHU-9D in Hong Kong adolescents.
Xu RH, Xu Y
Health Qual Life Outcomes · 2026 May · PMID 42104409 · Full text
OBJECTIVE: This study aimed to perform a cultural adaptation of the Child Health Utility 9D (CHU-9D), a health-related quality of life (HRQoL) instrument, into Traditional Chinese specifically for use in Hong Kong, and e...
OBJECTIVE: This study aimed to perform a cultural adaptation of the Child Health Utility 9D (CHU-9D), a health-related quality of life (HRQoL) instrument, into Traditional Chinese specifically for use in Hong Kong, and evaluating its psychometric properties among a sample of local adolescents. METHODS: A cross-sectional survey design was employed for data collection. Adolescents aged 13 to 17 years were recruited from diverse local community settings to complete a self-administered questionnaire that included the adapted CHU-9D and relevant demographic items. Psychometric evaluations encompassed assessments of ceiling and floor effects, factorial validity through confirmatory factor analysis, convergent validity via correlation analysis, and known-group validity to examine differences across predefined risk groups. RESULTS: A total of 627 adolescents successfully completed the survey, providing a robust dataset for analysis. The unidimensionality of the CHU-9D was confirmed, demonstrating excellent model fit indices. A ceiling effect was observed, with 27% of participants reporting full health status on the CHU-9D descriptive system, indicating potential limitations in capturing variations at the upper end of health. Convergent validity was supported by significant correlations between CHU-9D and conceptually relevant items and subscales from another HRQoL instrument. The instrument exhibited strong known-group validity, effectively discriminating HRQoL differences across various risk groups with statistically significant results. CONCLUSION: The culturally adapted Traditional Chinese version of the CHU-9D demonstrates sound psychometric properties in Hong Kong adolescents, supporting it as a valid tool for measuring and valuing HRQoL in this population and cultural context.
Cognitive functioning and nausea as stage-specific drivers of quality of life in breast cancer: a longitudinal network analysis.
Chen F, Feng J, Xu M … +6 more , Li S, Ho YS, Takemura N, Yorke J, Li J, Ye Z
Health Qual Life Outcomes · 2026 May · PMID 42092991 · Full text
OBJECTIVE: To map the dynamic trajectory of quality of life (QoL) in newly diagnosed breast cancer patients and identify the central symptom drivers that precipitate global health decline during the peri-treatment period...
OBJECTIVE: To map the dynamic trajectory of quality of life (QoL) in newly diagnosed breast cancer patients and identify the central symptom drivers that precipitate global health decline during the peri-treatment period. METHODS: In this longitudinal study, patients newly diagnosed with breast cancer (n = 337) were recruited at a comprehensive cancer center in Guangzhou, China. The EORTC QLQ-C30 was administered at diagnosis (T1), discharge (T2), and one-month post-discharge (T3). We utilized Cross-Lagged Panel Network (CLPN) analysis to determine temporal relationships and identify influential “bridge” nodes between time points. RESULTS: Symptom burden shifted significantly over time; insomnia was dominant at diagnosis, whereas fatigue peaked post-discharge. Network analysis revealed two distinct driver mechanisms. During the transition from diagnosis to treatment (T1–T2), Cognitive Functioning emerged as the strongest predictor of subsequent symptom deterioration (Out-Expected Influence [EI] = 0.366). Conversely, in the acute recovery phase (T2–T3), Nausea/Vomiting replaced cognitive issues as the central driver (Out-EI = 0.517), acting as the primary gateway to global health decline. CONCLUSION: The drivers of QoL deterioration evolve rapidly during the peri-treatment phase. Cognitive dysfunction at diagnosis serves as an early temporal predictor for somatic symptoms, suggesting that clinical management must shift from reactive symptom control to proactive cognitive prehabilitation at the point of diagnosis.
Predictive analysis of health-related quality of life trajectories in older patients with chronic pain based on explainable machine learning models.
Zhang X, Liu W, Hu Y … +5 more , Zhang D, Liao Y, Wu Z, Huang M, Wei J
Health Qual Life Outcomes · 2026 May · PMID 42070032 · Full text
BACKGROUND: Health-related quality of life (HRQoL) is a vital indicator of evaluating care outcomes and prognosis, yet little is understood about its developmental trajectories in older patients with chronic pain. This s...
BACKGROUND: Health-related quality of life (HRQoL) is a vital indicator of evaluating care outcomes and prognosis, yet little is understood about its developmental trajectories in older patients with chronic pain. This study aimed to identify latent HRQoL trajectories and their predictors, and to develop explainable machine learning models for predicting HRQoL deterioration. METHODS: This prospective cohort study assessed 608 older patients with chronic pain at admission and at 1, 3, and 6 months post-admission, collecting data on HRQoL, general characteristics, pain level, activities of daily living (ADL), depression, and perceived social support. Growth mixture modeling was applied to identify trajectories of physical and mental HRQoL. Predictors were selected using LASSO regression and SVM-RFE. Nine explainable machine learning models were developed for both components, and SHAP interpreted the outputs. An HRQoL decision-support dashboard was developed to facilitate potential clinical application. RESULTS: Three physical HRQoL trajectories were identified: Stable High, Decline and Low Stability, alongside two mental HRQoL trajectories: Improvement and Decline. Key predictors included education level, pain duration, pain level, ADL, depression, and perceived social support, with ADL and pain level being the most influential for physical and mental HRQoL, respectively. CONCLUSIONS: This dual-trajectory study identified five distinct HRQoL patterns in older patients with chronic pain, elucidating key predictors via explainable machine learning. The proposed HRQoL decision-support dashboard may provide an interpretable tool to support understanding of predictive relationships and assist healthcare professionals in HRQoL assessment. CLINICAL TRIAL NUMBER: Not applicable.
Real-world comparative evaluation of quality of life and economic burden in patients with psoriatic arthritis and axial spondyloarthritis under different treatment strategies: a multicenter cross-sectional study.
Zhang L, Chang S, Sun Y … +5 more , Chen Y, Zhou D, Liu K, Du C, Jiang G
Health Qual Life Outcomes · 2026 Apr · PMID 42057047 · Full text
BACKGROUND: Psoriatic arthritis (PsA) and axial spondyloarthritis (axSpA) are chronic inflammatory disorders that significantly impair patients’ quality of life and impose substantial economic burdens. The advent of Janu...
BACKGROUND: Psoriatic arthritis (PsA) and axial spondyloarthritis (axSpA) are chronic inflammatory disorders that significantly impair patients’ quality of life and impose substantial economic burdens. The advent of Janus kinase (JAK) inhibitors and biologic therapies has diversified treatment options, prompting increased attention to the balance between clinical efficacy and economic impact. METHODS: This study analyzed 451 valid responses from a total of 508 collected questionnaires (validity rate: 88.78%), comprising 203 PsA and 248 axSpA patients. Participants were categorized based on treatment modality into three groups: conventional therapy, biologic agents, and JAK inhibitors. Economic burden was assessed using analysis of variance (ANOVA). Generic quality of life was evaluated via the Short Form-36 (SF-36) survey, while disease-specific quality of life was measured using the Dermatology Life Quality Index (DLQI) for PsA and the Ankylosing Spondylitis Quality of Life (ASQoL) questionnaire for axSpA. Multiple linear regression models were constructed to identify factors influencing quality of life outcomes. RESULTS: Patients receiving JAK inhibitors or biologic therapies demonstrated significantly better DLQI and ASQoL scores compared to those undergoing conventional treatment, indicating superior efficacy of targeted therapies in enhancing disease-specific quality of life. While SF-36 scores also varied among treatment groups, the differences were less pronounced, suggesting limited sensitivity of this generic measure to disease-specific changes. Economically, the conventional therapy group incurred the lowest costs but also reported the poorest quality of life, reflecting a “low cost–low benefit” scenario. Conversely, JAK inhibitors and biologics, despite higher costs, substantially improved symptoms and quality of life, underscoring their greater clinical value. CONCLUSION: Treatment modality significantly influences both quality of life and economic burden in PsA and axSpA patients. Targeted therapies, including JAK inhibitors and biologics, offer marked improvements in disease-specific quality of life, as evidenced by DLQI and ASQoL scores, compared to conventional treatments. Although associated with higher direct costs, these therapies’ long-term benefits and potential to improve patient outcomes justify their broader clinical adoption, particularly in contexts with supportive health policies and expanding insurance coverage.
Clinical, social, and home-level factors associated with the quality of life of residents living with dementia in Canadian nursing homes: a cross-sectional, multi-province study.
Dusing GJ, Corbett K, Dymchuk E … +15 more , O'Rourke HM, Chamberlain SA, Doupe MB, Kelly C, Keefe J, Aubrecht K, Beeber AS, Arya A, Banerjee S, Jarrett P, Estabrooks CA, Shrestha S, Devkota R, Ristau M, Hoben M
Health Qual Life Outcomes · 2026 Apr · PMID 42001103 · Full text
BACKGROUND: Quality of life (QoL) is a central priority in dementia care, yet most nursing homes (NHs) in Canada rely on clinical indicators that do not capture the emotional and social dimensions of residents’ well-bein...
BACKGROUND: Quality of life (QoL) is a central priority in dementia care, yet most nursing homes (NHs) in Canada rely on clinical indicators that do not capture the emotional and social dimensions of residents’ well-being. Little is known about how clinical, social, and NH factors jointly shape QoL for residents living with dementia. This study examined the associations of resident social characteristics, clinical conditions, and NH factors with resident QoL. METHODS: This cross-sectional study included publicly funded NHs in the Canadian provinces of Alberta, British Columbia, Manitoba, Nova Scotia, and Ontario. QoL was measured using staff-proxy interviews to complete the DEMQOL-CH. Staff also provided information about resident social characteristics. Clinical data were obtained from routinely collected, standardized resident assessments. NH characteristics were reported by administrators. We used linear regression with robust standard errors to assess associations of social, clinical, and NH variables with resident QoL. Multiple imputation addressed missing data, and model fit was compared using the Akaike Information Criterion. RESULTS: The final sample included 2,950 residents in 67 NHs. Older age was also associated with lower QoL (-0.009 per standard-deviation increase in age, 95%CI: −0.016; −0.002). Clinical factors that were significantly associated with lower QoL were: depressive symptoms (coefficient=-0.066, 95%CI: -0.082; -0.050), responsive behaviours (-0.034, 95%CI: -0.054; -0.015), and health instability (-0.027, 95%CI: -0.045; -0.010). More severe cognitive impairment was associated with higher staff-rated QoL (0.039, 95%CI: 0.023; 0.055). Compared with Ontario, residents in British Columbia (− 0.059, 95%CI: −0.079; −0.040) and Manitoba (− 0.039, 95%CI: −0.061; −0.017) had lower QoL. Living in a large NH was associated with lower quality-of-life scores relative to small homes (− 0.034, 95%CI: −0.051 to − 0.016). The combined model, which incorporated social, clinical, and facility factors, had the best fit. CONCLUSIONS: QoL in Canadian NHs appears to be shaped primarily by resident clinical conditions and facility environments rather than individual social characteristics. Interventions that address mental health, behavioural symptoms, and environmental stressors may yield the greatest improvements in resident well-being.
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