Quality Of Life Research[JOURNAL]
Sun
200 papers
Prognostic associations between patient-reported outcomes and overall survival among patients with advanced squamous non-small cell lung cancer: results from the RATIONALE-307 trial.
Wang J, Yu X, Leaw S … +3 more , Barnes FB, Victor T, Barnes G
Qual Life Res · 2026 Jun · PMID 42319531 · Full text
PURPOSE: In the RATIONALE-307 trial, favorable overall survival (OS) outcomes with tislelizumab plus chemotherapy versus chemotherapy alone have been reported, along with improvements in patient-reported outcomes (PROs),...
PURPOSE: In the RATIONALE-307 trial, favorable overall survival (OS) outcomes with tislelizumab plus chemotherapy versus chemotherapy alone have been reported, along with improvements in patient-reported outcomes (PROs), including global health status/quality of life (GHS/QoL) and lung cancer-specific symptoms such as cough and dyspnea. Here, we aimed to evaluate the association between patient-reported symptoms and OS among patients with first-line advanced sq-NSCLC. METHODS: PROs were assessed using the EORTC QLQ-C30 and QLQ-LC13 instruments. A novel three-component joint model (JM) was developed, linking linear mixed and Cox models to evaluate associations between PRO change from baseline scores, recurrent-symptomatic deterioration (RS-D) events, and OS. The association between PROs and OS was summarized via association-effect hazard ratios (HRs) from the JMs. RESULTS: Overall, 328 patients were included: 111 in the tislelizumab plus paclitaxel-carboplatin arm (Tisle + PC), 110 in the tislelizumab plus nab-paclitaxel-carboplatin arm (Tisle + nPC), and 107 in the paclitaxel-carboplatin (PC) alone arm. Compared to PC alone, Tisle + PC and Tisle + nPC arms significantly improved GHS/QoL (mean difference: 6.29 and 10.23, respectively; both p < 0.05). Dyspnea significantly improved in both Tisle arms; chest pain improved in the Tisle + nPC arm only. In the Tisle + PC arm, chest pain and cough were significantly associated with a 36.3% reduced risk of death (both HRs = 0.64; p = 0.02). CONCLUSION: In this analysis, compared to PC alone, Tisle + PC improved GHS/QoL and dyspnea in both arms, while chest pain improvement was observed only with Tisle + nPC.
Psychometric evaluation of the Mastocytosis Symptom Severity Daily Diary (MS2D2) in adults with nonadvanced systemic mastocytosis (NonAdvSM).
Marcus JC, Akin C, Zhang J … +5 more , Easton R, Lim-Watson M, Siebenhaar F, Gwaltney C, Turner R
Qual Life Res · 2026 Jun · PMID 42319518 · Full text
PURPOSE: This study evaluated the measurement properties and ability to detect clinically meaningful change of the Mastocytosis Symptom Severity Daily Diary (MS2D2), a patient-reported outcome instrument designed to meas...
PURPOSE: This study evaluated the measurement properties and ability to detect clinically meaningful change of the Mastocytosis Symptom Severity Daily Diary (MS2D2), a patient-reported outcome instrument designed to measure symptom severity in adults with nonadvanced systemic mastocytosis (NonAdvSM). METHODS: Psychometric evaluation of the MS2D2 used blinded data from 230 adults with NonAdvSM enrolled in the Summit Phase 2 study (NCT05186753). The study comprised two parts: Part 1 (n = 54) for dose-finding and initial domain structure development, and Part 2 (n = 179) for efficacy evaluation, validation and longitudinal assessment. Analyses included item-level statistics, confirmatory factor analysis (CFA), internal consistency (Cronbach's α), test-retest reliability (ICC), convergent and known-groups validity, responsiveness, and anchor-based estimation of meaningful change thresholds. RESULTS: Structural validity supported a four-domain, 11-item Total Symptom Score (TSS) framework. Internal consistency and test-retest reliability were excellent (α = 0.79-0.95; ICC = 0.95-0.98). Convergent validity was supported through strong correlations with disease-specific symptom and health-related quality of life (HRQoL) measures (r = 0.85 and r = 0.59). Known-groups validation revealed domain scores differing by 2-5 points between anchor severity strata and TSS by 2.8 points (all p < 0.05). Scores were sensitive to change, correlating (r = 0.39-0.74) with changes in patient status. TSS within-patient meaningful improvement thresholds were 1.6-2.2 points (0-10 scale) and 17.2-24.7 points (0-110 sum), with domains showing similar ranges. Percent change thresholds indicated meaningful improvement at approximately 30-40% reduction for both TSS and domain scores. CONCLUSIONS: MS2D2 is a reliable, valid, and responsive instrument for assessing symptom severity in NonAdvSM, with evidence supporting its use in clinical trials to evaluate treatment benefit.
Caregiver contribution to patient self‑care and quality of life among informal carers of adult patients with inflammatory bowel disease: a cross‑sectional study.
Napolitano D, Gonzalo MFM, Cascio AL … +14 more , Benedetti F, Povoli A, Sanità T, Suriano V, Lorenzon G, Luongo A, Zaetta D, De Marinis F, Orgiana N, Petruccini G, Vanzi V, Pastore F, Rivera-Sequeiros A, Bozzetti M
Qual Life Res · 2026 Jun · PMID 42295561 · Full text
PURPOSE: Informal caregivers play a critical role in the management of adult patients with inflammatory bowel disease (IBD), yet the association between their contribution to patient self-care and their own health-relate...
PURPOSE: Informal caregivers play a critical role in the management of adult patients with inflammatory bowel disease (IBD), yet the association between their contribution to patient self-care and their own health-related quality of life (HRQoL) remains underexplored. This study aimed to examine the cross-sectional association between caregivers' contribution to patient self-care and caregivers' physical and mental HRQoL. METHODS: A multicentre cross-sectional study was conducted across nine IBD centres in Italy. Caregiver contribution to patient self-care was assessed using the Caregiver Contribution to Self-Care of Chronic Illness Inventory (CC-SC-CII), including Maintenance, Monitoring, and Management domains. HRQoL was measured using the 12-Item Short Form Survey, yielding Physical Component Summary (PCS-12) and Mental Component Summary (MCS-12) scores. Generalized Additive Models were used to estimate potential non-linear associations between CC-SC-CII domains and HRQoL. RESULTS: The study included 275 informal caregivers. No statistically supported associations were observed between CC-SC-CII Maintenance, Monitoring, or Management and PCS-12. For MCS-12, only CC-SC-CII Maintenance showed a statistically supported non-linear association (edf = 4.34, F = 2.21, p = 0.018; adjusted R = 0.272; deviance explained = 38.1%). The model-estimated MCS-12 difference between the 75th and 25th percentiles of CC-SC-CII Maintenance was 6.58 points (95% CI 1.50-11.70). No statistically supported associations were observed for CC-SC-CII Monitoring or Management and MCS-12. CONCLUSION: Caregiver contribution to patient self-care maintenance was associated with caregivers' mental, but not physical, HRQoL. The findings should be interpreted as exploratory associations and require confirmation in longitudinal dyadic studies including both caregiver- and patient-reported outcomes.
Translation and psychometric properties of the Chinese version of the inventory to measure and assess image disturbance in head and neck cancer (IMAGE-HN).
Xu W, Wang S, Zhu Y … +9 more , Duckett KA, Yang J, Zhang Y, Xiang L, Ge R, Dai Y, Zheng M, Graboyes EM, Wan H
Qual Life Res · 2026 Jun · PMID 42295549 · Publisher ↗
PURPOSE: Head and neck cancer and its treatments often lead to significant functional and cosmetic changes, resulting in body image disturbance (BID), which is a prevalent and distressing psychosocial issue affecting up...
PURPOSE: Head and neck cancer and its treatments often lead to significant functional and cosmetic changes, resulting in body image disturbance (BID), which is a prevalent and distressing psychosocial issue affecting up to 75% of patients. To address the clinical limitations of existing tools for assessing BID in Chinese patients, this study culturally adapted the English-language IMAGE-HN into Mandarin Chinese and evaluated its psychometric properties. METHODS: Following the 2017 EORTC Translation Procedure Manual, a forward translation, reconciliation, backward translation, reporting, expert panel review, and cognitive debriefing were conducted to develop a culturally adapted Chinese version. The translated instrument was administered to 387 patients from two tertiary medical centers. Psychometric evaluation included classical test theory and item response theory, with confirmatory factor analysis to examine unidimensionality and local independence, and Rasch analysis to assess model fit, monotonicity, reliability, and separation indices. RESULTS: Confirmatory factor analysis confirmed the unidimensionality and local independence of the four hypothesized domains and the overall scale. Rasch analysis indicated acceptable model fit (infit and outfit mean squares < 2.0) and monotonicity across all rating scale categories. Person reliability ranged from 0.85 to 0.92, separation indices from 2.43 to 3.34, and item reliability from 0.71 to 0.95. All 24 items and subscales were retained without modification. CONCLUSION: The Chinese version of IMAGE-HN demonstrates satisfactory psychometric properties, supporting its reliability and validity for assessing body image disturbance in head and neck cancer patients in China. It is recommended for use in future clinical research and practice with this population.
From framework to practice: applying the proteus-practice framework to learn lessons for integrating PROs in clinical care.
Schuster ALR, Snyder C, Haverman L … +6 more , Cracchiolo JR, Schougaard LMV, Cizik AM, Sandhu ATS, Brundage M, Crossnohere NL
Qual Life Res · 2026 Jun · PMID 42295503 · Full text
PURPOSE: As the use of patient-reported outcomes (PROs) in clinical practice expands, there is a growing need to understand how PROs are being integrated across diverse healthcare settings. We aimed to use the PROTEUS-Pr...
PURPOSE: As the use of patient-reported outcomes (PROs) in clinical practice expands, there is a growing need to understand how PROs are being integrated across diverse healthcare settings. We aimed to use the PROTEUS-Practice Framework to systematically describe real-world approaches to PRO integration into clinical care and identify lessons learned. METHODS: Participants in the international PROTEUS Consortium were invited to submit case studies describing PRO applications in clinical care. Contributors completed a structured template aligned with the PROTEUS-Practice Framework, which outlines 16 steps for PRO integration across design, implementation, and management stages. Case studies were descriptively summarized by framework step and responses were thematically analyzed by framework stage to identify lessons learned. RESULTS: Five case studies described the integration of PROs in diverse clinical contexts, including three within individual health systems and two spanning multiple health systems. Fifteen cross-cutting lessons learned emerged across the PROTEUS-Practice Framework stages. Themes identified in at least three case studies include the importance of stakeholder training during design, PRO champions during implementation, and EHR integration to support management. Clear goals, alignment of expected outcomes, iterative design processes, user-friendly visualizations, and regular system updates were also commonly emphasized as critical to successful integration. CONCLUSION: The PROTEUS-Practice Framework provided a structured approach for describing real-world approaches to PRO integration in clinical care. Its use enabled the identification of cross-cutting lessons learned that offer practical guidance for optimizing PRO integration and tailoring its use in diverse clinical contexts.
A dyadic approach to understanding anxiety and child overall health in pediatric oncology: insights from an actor-partner interdependence model.
Olsavsky AL, Peek MR, Montgomery KE … +1 more , Skeens MA
Qual Life Res · 2026 Jun · PMID 42295495 · Full text
PURPOSE: Though child and caregiver anxiety are known to contribute to child overall health, this has not been examined dyadically. This cross-sectional study dyadically examined anxiety (child-self, caregiver-self) and...
PURPOSE: Though child and caregiver anxiety are known to contribute to child overall health, this has not been examined dyadically. This cross-sectional study dyadically examined anxiety (child-self, caregiver-self) and child overall health (child-self, caregiver-proxy) in pediatric cancer. METHODS: Children and caregivers (n = 76 dyads; n = 152) from two Midwestern children's hospitals self- or proxy-reported child overall health, and their own anxiety. Descriptive statistics and bivariate analyses (e.g., correlations, t-tests) examined associations among demographics, medical characteristics, and focal variables. An Actor-Partner Interdependence Model (APIM) evaluated dyadic associations between child and caregiver self-reports of anxiety (independent variables) and child self- and caregiver proxy-reports of child overall health (dependent variables). Associations between independent and dependent variables for one reporter are actor effects, whereas across reporters are partner effects. RESULTS: Among 76 child (88.2% White; 34.2% Female; M = 13.35-years-old, SD = 3.20) and caregiver (92.1% White, 69.7% Female) dyads, children (M = 46.64, SD = 9.09) and caregivers (M = 39.33, SD = 8.97) reported below-average child overall health. Children reported below-average anxiety levels (M = 46.31, SD = 10.05), and caregivers reported above-average anxiety levels (M = 55.18, SD = 8.37). APIM analyses revealed significant actor effects: higher levels of self-reported anxiety were associated with lower levels of child overall health (b = - 0.29, p < .001). Marginally non-significant partner effects revealed greater anxiety was linked to lower partner reports of child overall health (b = - 0.14, p = 0.051). CONCLUSION: Our findings underscore supporting the family system within pediatric cancer and suggest mitigating caregiver anxiety may have downstream benefits. Interventions are needed for caregivers and children to support their mental and overall health during cancer treatment.
Trends in cardiometabolic disease and health-related quality of life in the United States, 2001-2022.
Yang D, Kim DD
Qual Life Res · 2026 Jun · PMID 42295494 · Full text
PURPOSE: To examine associations between cardiometabolic conditions and health-related quality of life (HRQoL) and evaluate temporal trends in condition-associated HRQoL decrements from 2001 to 2022. METHODS: We analyzed...
PURPOSE: To examine associations between cardiometabolic conditions and health-related quality of life (HRQoL) and evaluate temporal trends in condition-associated HRQoL decrements from 2001 to 2022. METHODS: We analyzed nationally representative data from U.S. adults aged ≥ 18 years in the Medical Expenditure Panel Survey (2001-2022), excluding years without BMI data collection (2017, 2019, 2021). HRQoL was measured using EQ-5D utilities mapped from SF-12 scores with a validated algorithm. For each year, survey-weighted multivariable regression models estimated associations of sociodemographic characteristics, BMI, and six cardiometabolic conditions with HRQoL. Temporal trends in condition-associated HRQoL decrements were assessed using meta-regression. To estimate recent average associations, we pooled data from 2015, 2016, 2018, and 2022. RESULTS: HRQoL improved over time, with lower values in 2001-2012 than 2013-2022 and an increase from its lowest value in 2012 (0.873) to highest in 2018 (0.888). Stroke contributed the greatest adjusted HRQoL decrement, followed by heart disease, diabetes, high blood pressure, obesity, and high cholesterol. Diabetes- and heart disease-associated decrements attenuated linearly over time (-0.0500 in 2001 to -0.0414 in 2022 and -0.0611 to -0.0487, respectively) , whereas high blood pressure-associated decrement was greatest around 2012 (-0.0361 in 2001, -0.0404 in 2012, and - 0.0313 in 2022) and obesity-associated decrement was smallest around 2012 (- 0.0311, - 0.0290, and - 0.0370). CONCLUSIONS: Changes in condition-associated HRQoL decrements over time suggest that utility values may not remain constant across calendar years. Smaller decrements for diabetes and heart disease may reflect better treatment and management, whereas the growing obesity-related decrement may indicate changes in the national severity of obesity. These patterns highlight the need for current, nationally representative utility estimates in population health research.
Impact of response shift on change in patient-reported outcomes: a systematic review.
Verdam MGE, Kwon JY, Russell L … +3 more , Sébille V, Sprangers MAG, Sawatzky R
Qual Life Res · 2026 Jun · PMID 42295490 · Full text
PURPOSE: The aim of this systematic review is to provide insight into whether response shift impacts the conclusions about change in patient-reported outcome measures (PROMs) in terms of statistical significance, magnitu...
PURPOSE: The aim of this systematic review is to provide insight into whether response shift impacts the conclusions about change in patient-reported outcome measures (PROMs) in terms of statistical significance, magnitude, and decisions made. METHODS: Response shift studies from Sawatzky et al. (2025; QLR) were analyzed: longitudinal quantitative studies that examined response shift using PROMs, published before May 2023. We determined whether: 1) impact of response shift was investigated, 2) information about change in the scores of a PROM (i.e., PROM-result) before and after taking response shift into account was provided, and 3) impact of response shift was evidenced in terms of statistical significance, magnitude, or decisions made. RESULTS: A total of 173 response shift studies that included 943 PROM-results were evaluated. 55% of studies (N = 96) investigated impact of response shift and information about impact was available for 51% of studies (N = 89). The corresponding percentages based on PROM-results were 47% (N = 446) and 53% (N = 502), respectively. Impact of response shift was evidenced in 69% of studies (N = 61) and 41% of PROM-results (N = 207), where impact on statistical significance and/or magnitude of change were most often evidenced (49-53% of studies and 20-31% of PROM-results), whereas impact on decisions was evidenced less often (8% and 2% respectively). CONCLUSION: About half of the studies addressed impact of response shift and showed evidence of impact, however, impact on decisions was rarely addressed. Future research should focus on evaluating impact of response shift on conclusions about change in PROMs, especially in the context of healthcare decision-making.
Psychometric properties of four FACE-Q Aesthetics scales in patients planning and undergoing minimally invasive facial cosmetic procedures.
Müller EM, Nikl A, Krebs M … +5 more , Szabó Á, Holló P, Brodszky V, Rencz F, Kemény LV
Qual Life Res · 2026 Jun · PMID 42295477 · Full text
OBJECTIVES: This study aimed to assess aspects of validity of four FACE-Q Aesthetics scales in a sample of patients undergoing and planning facial minimally invasive cosmetic procedures (MICPs), such as botulinum toxin,...
OBJECTIVES: This study aimed to assess aspects of validity of four FACE-Q Aesthetics scales in a sample of patients undergoing and planning facial minimally invasive cosmetic procedures (MICPs), such as botulinum toxin, lip augmentation and soft tissue augmentation treatments. METHODS: In 2023, a cross-sectional survey included 210 Hungarian women who had undergone and 147 planning facial MICPs, with similar mean ages Respondents completed four FACE-Q scales (Aging Appraisal, Appearance Distress, Early Life Impact and Age VAS), EQ-5D-5L, Rosenberg Self-Esteem Scale (RSES) and the Brief Fear of Negative Evaluation Scale-Straightforward Items (BFNE-S). Comprehensibility, ceiling/floor effects, structural validity (principal component analysis, confirmatory factor analysis), internal consistency, and construct validity (convergent, divergent, known-group validity) of the four FACE-Q scales were assessed. RESULTS: All FACE-Q scales, except the Age VAS, showed a ceiling effect (20-28%). Appearance Distress showed strong convergent validity with RSES (r = 0.742), BFNE-S (r = - 0.702), and EQ-5D-5L anxiety/depression (r = - 0.519). Aging Appraisal and Appearance Distress scales were unidimensional, whereas Early Life Impact Scale had a three-factor structure. All four FACE-Q scales were able to differentiate between known groups of patients based on self-esteem, fear of negative evaluation and acceptance of bodily appearance. Women who had undergone procedures reported higher Aging Appraisal (72.9 vs. 63.3) and Appearance Distress (77.1 vs. 68.4) scores and felt younger (- 5.0 vs. - 2.8 years) than those planning them (p < 0.001 for all). CONCLUSIONS: Our findings provide initial support for the validity of the four FACE-Q scales in MICP populations, but further validation (e.g. assessment of responsiveness and test-retest reliability) is needed.
Preference-based scoring algorithm to estimate societal utilities based on the patient-reported experience of cognitive impairment in schizophrenia (PRECIS) instrument.
Hoogendoorn M, Santi I, Sussex AK … +3 more , Aggio D, Wang J, Lloyd A
Qual Life Res · 2026 Jun · PMID 42295474 · Full text
PURPOSE: Generic measures of health-related quality of life (HRQoL), such as the EQ-5D, may inadequately capture the impact of cognitive impairment in schizophrenia, resulting in incorrect QALY estimates in economic eval...
PURPOSE: Generic measures of health-related quality of life (HRQoL), such as the EQ-5D, may inadequately capture the impact of cognitive impairment in schizophrenia, resulting in incorrect QALY estimates in economic evaluations. This study aimed to obtain health utilities by valuing key items of the Patient-Reported Experience of Cognitive Impairment in Schizophrenia (PRECIS) instrument. METHODS: First, expert interviews and psychometric analysis of the 28-item version of the PRECIS were performed to identify the best-performing and most relevant items. Second, health states based on the four selected PRECIS items representing memory, communication, executive function and attention (each with five levels of severity) were valued by the UK general public through a discrete choice experiment (DCE) survey and composite time trade-off (cTTO) interviews. To estimate a utility scoring algorithm, the DCE data were analyzed using mixed logit models and rescaled onto a 0-1 (dead to full health) utility scale using the cTTO results. RESULTS: The cTTO utility for the best health state (level 1, "not at all hard", across all domains) had a mean utility of 0.992 (SD 0.038) while the worst state (level 5, "very hard", across domains) had a mean utility of 0.292 (SD 0.479). All domains significantly predicted larger utility decrements with increasing impairment severity. CONCLUSION: This study demonstrated the feasibility of quantifying health utility values for patient-reported cognitive impairment domains using the validated PRECIS instrument. The resulting utilities can capture the HRQoL impact of cognitive impairment, supporting more accurate future economic evaluations of therapies targeting cognitive function in schizophrenia.
The EQ-5D-5L valuation study in Nigeria.
Yusuf AH, Ardo BU, Thavorncharoensap M … +11 more , Roudijk B, Purba FD, Yang Z, Liao M, Chaikledkaew U, Youngkong S, Thakkinstian A, Agada-Amade YA, Amole TG, Sambo MN, Ohiri K
Qual Life Res · 2026 Jun · PMID 42295458 · Full text
PURPOSE: A country-specific EQ-5D-5L value set ensures that health utility estimates reflect national preferences, enabling contextually appropriate health technology assessment (HTA) to inform efficient resource allocat...
PURPOSE: A country-specific EQ-5D-5L value set ensures that health utility estimates reflect national preferences, enabling contextually appropriate health technology assessment (HTA) to inform efficient resource allocation decisions. This study aimed to develop the first EQ-5D-5L value set for Nigeria. METHODS: Adult Nigerians were recruited from 12 states using multi-stage stratified quota sampling based on age, sex, and education. Face-to-face interviews were conducted through Computer-Assisted Personal Interviews using the EQ-PVT protocol. The interview comprises 2 main parts: composite time-trade-off (cTTO) and discrete choice experiment (DCE) tasks. The cTTO data were modelled using random intercept, Tobit, linear (heteroskedasticity-corrected), and Tobit (heteroskedasticity-corrected) models. DCE data were analyzed using Mixed Logit Model (MLM). Hybrid models combining the cTTO and DCE data were also estimated. RESULTS: A total of 1,200 interviews were conducted. The Hybrid Tobit model with intercept, corrected for heteroscedasticity, and excluded flagged responses was considered the preferred model. The utility values of the best (11,111), 2nd best (21,111), worst (55,555), and 2nd worst (54,555) health states are 1, 0.963, - 0.733, and - 0.653, respectively. The most important dimension is Pain/Discomfort followed by Anxiety/Depression, Mobility, Usual Activity, and Self-care, respectively. CONCLUSION: This study provides the first EQ-5D-5L value set for Nigeria, derived from a representative adult population. This value set provides a strong foundation for HTA, supporting evidence-informed policy decisions and advancing progress towards Universal Health Coverage (UHC) in Nigeria and the wider West African region.
Inequity in quality of life among culturally and linguistically diverse children in Australia.
Hayes A, Wen LM, Howard K … +2 more , Baur L, Killedar A
Qual Life Res · 2026 Jun · PMID 42295449 · Full text
PURPOSE: The aims of this study were to investigate whether children from different culturally and linguistically diverse (CALD) backgrounds in Australia have similar Health Related Quality of Life (HRQoL), in early chil...
PURPOSE: The aims of this study were to investigate whether children from different culturally and linguistically diverse (CALD) backgrounds in Australia have similar Health Related Quality of Life (HRQoL), in early childhood, middle childhood, and adolescence. METHODS: We used data from 9099 children from the Longitudinal Study of Australian Children (LSAC), aged between 2 and 17 years, including HRQoL measured with the parent proxy Pediatric Quality of Life Inventory (PedsQL). The study pertained to cohort data from 2004 to 2018. CALD groups were defined according to child, mother's and father's country of birth and main language spoken at home. The association of child HRQoL with CALD group, was analysed using generalised estimating equations, adjusted for age, sex, socioeconomic position (SEP) and weight status. RESULTS: Children of Middle Eastern or North African, South-East Asian, South and Central Asian and Oceania backgrounds had significantly lower HRQoL (p < 0.05) than children from English speaking backgrounds. These disparities were greatest during middle childhood and adolescence and only partly explained by lower SEP and weight status. Disparities in physical HRQoL were greater than psychosocial HRQOL. CONCLUSION: Considerable inequity in HRQoL is present in Australian children from different CALD backgrounds. This study highlights the need for culturally tailored programs for school-aged children to improve their physical HRQoL.
Measuring inequality in quality of life: further evidence that the EQ-5D-5L may underestimate it.
Lamu AN, Chen G, Cheng LJ … +2 more , Olsen JA, EQ-DAPHNIE Project Team
Qual Life Res · 2026 Jun · PMID 42295447 · Full text
PURPOSE: A previous study found that individuals with identical EQ-5D-5L profiles reported systematically higher EQ VAS scores with increasing educational attainment, which suggests a 'hidden' socioeconomic gradient not...
PURPOSE: A previous study found that individuals with identical EQ-5D-5L profiles reported systematically higher EQ VAS scores with increasing educational attainment, which suggests a 'hidden' socioeconomic gradient not captured by the EQ-5D-5L. This study examines the robustness and generalisability of these findings using multi-country data. METHODS: We analysed data from 32,327 respondents aged 25 to 79 years across eight high-income countries: Australia, Canada, France, Germany, the Netherlands, New Zealand, the UK, and the US. The data came from the EQ-DAPHNIE study. Within ten selected EQ-5D-5L health profiles, we used linear regression models to estimate the associations between EQ VAS scores and educational attainment or subjective income status, adjusting for age, sex, and country. RESULTS: We observed a consistent educational gradient in EQ VAS scores across most EQ-5D-5L profiles. Tertiary education was associated with higher scores in all ten profiles, with effects statistically significant at p < 0.10 in seven, of which four at p < 0.01. Income status showed an even stronger gradient, with significant associations in nine of the ten profiles. These patterns were evident in all eight countries. CONCLUSION: These multi-country findings provide robust evidence of a socioeconomic gradient in EQ VAS scores among respondents who report identical EQ-5D-5L health profiles, over and above what is reflected in the five EQ-5D-5L dimensions. This pattern has implications for the use of EQ-5D-5L values in equity-informative health technology assessment and population health monitoring.
Assessing the dimensionality of the EQ-HWB-25 alongside EQ-5D-5L, QOL-ACC and ASCOT in an older adult population.
Bahrampour M, Akanksha A, Kuharic M … +2 more , Viney R, Mulhern B
Qual Life Res · 2026 Jun · PMID 42295438 · Full text
PURPOSE: Several instruments assess different aspects of quality of life (QoL), the EQ-HWB is developed to capture broader health and wellbeing constructs. Established QoL measures such as the EQ-5D-5L, QOL-ACC, and ASCO...
PURPOSE: Several instruments assess different aspects of quality of life (QoL), the EQ-HWB is developed to capture broader health and wellbeing constructs. Established QoL measures such as the EQ-5D-5L, QOL-ACC, and ASCOT are widely used in older populations. Analysing dimensionality across these instruments can provide insight into the constructs they cover and their conceptual relationships. This study aimed to examine the dimensionality of the EQ-HWB both on its own and alongside pooled items from these measures, to identify its underlying structure and the extent of item overlap. METHODS: Analysis was conducted using data from 453 participants aged 65 years and above who completed all four instruments. Exploratory Factor Analysis (EFA) was conducted to identify the underlying factor structure. Factors were selected based on eigenvalues greater than one and scree plots. A correlation cut-off of 0.32 was applied to determine item loading on a given factor. Both oblique and orthogonal rotations were explored. EFA was conducted separately for the EQ-HWB and each instrument, as well as for the pooled items from all instruments. RESULTS: EFAs conducted separately for the EQ-HWB, and each instrument resulted in a 4-factor structure. However, EFA of all pooled items showed that the 5-factor structure provided a better model fit. The five factors identified were: emotional functioning, self-care and usual activities, leisure and enjoyment, cognition and senses, and pain. CONCLUSION: This study provides evidence on the dimensions of QoL captured by a select pool of health focused and broader QoL instruments in an older adult population. The results enhance understanding of the conceptual coverage of the EQ-HWB relative to other QoL measures.
Health-related quality of life of people with obesity who have and have not received metabolic bariatric surgery: a qualitative study in Singapore.
Lee JJ, Chen LA, Cheng LJ … +3 more , Bansback N, Shabbir A, Luo N
Qual Life Res · 2026 Jun · PMID 42295431 · Publisher ↗
PURPOSE: Obesity is a multi-faceted health problem impacting many aspects of health-related quality of life (HRQoL). Although the clinical effectiveness of metabolic bariatric surgery (MBS) is well-documented across diff...
PURPOSE: Obesity is a multi-faceted health problem impacting many aspects of health-related quality of life (HRQoL). Although the clinical effectiveness of metabolic bariatric surgery (MBS) is well-documented across different settings, qualitative studies on post-MBS HRQoL involving Asian patients remain scarce. This study aimed to qualitatively explore the HRQoL of people with obesity and post-MBS individuals within a Southeast Asian context. METHODS: In-depth interviews were conducted with people with lived experience with obesity who were visiting a hospital weight management clinic in Singapore, using a semi-structured interview guide. A total of 25 study participants were recruited, including those who had and had not received MBS. Data was analysed using an inductive thematic approach. RESULTS: People with obesity reported substantial symptom burden and impaired physical functioning, issues with appearance and clothing, challenges with romantic relationship or physical intimacy, poor social well-being, and poor psychological and emotional well-being. Post-MBS patients also reported challenges, including loose skin and hair loss affecting appearance, as well as changes in eating habits and reduced food enjoyment. CONCLUSIONS: While Southeast Asians with obesity experience HRQoL deficits in similar domains as their counterparts in Western populations, their social well-being, particularly fear of becoming a burden to others, might be more affected. This study highlights the need for culturally sensitive HRQoL measures when assessing the pre- and post-operative outcomes of MBS in Singapore.
Correction: Air pollution and heat wave seriously affect the quality of life of children with obstructive sleep apnea.
Wu H, Fu X, Yu Q … +5 more , Yang Z, Su X, Wu W, Zhang G, Wu H
Qual Life Res · 2026 Jun · PMID 42274842 · Publisher ↗
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Socioeconomic inequalities in health-related quality of life during the COVID-19 pandemic: a six-country comparison using the EQ-5D-5 L.
Eijkens J, Bonsel JM, Feng YS … +3 more , Janssen MFB, Lubetkin EI, Haagsma JA
Qual Life Res · 2026 Jun · PMID 42260238 · Full text
PURPOSE: Despite the growing attention to health inequalities, there is no global consensus on how to measure socio-economic status. This study examined inequalities in health-related quality of life (HRQoL) during the e...
PURPOSE: Despite the growing attention to health inequalities, there is no global consensus on how to measure socio-economic status. This study examined inequalities in health-related quality of life (HRQoL) during the early phase of the COVID-19 pandemic across six countries-China, Italy, the Netherlands, Sweden, the United Kingdom (UK), and the United States (US)-using three SES indicators: education level, income, and work status. METHODS: Between April and June 2020, individuals aged 18-75 years old completed a web-based survey. HRQoL was measured using the EQ-5D-5L Level Sum Score (LSS), where higher scores indicate poorer health. Country-specific differences in LSS across SES groups were assessed using Kruskal-Wallis and Mann-Whitney U tests. Multiple linear regression models, adjusted for age, gender, and chronic conditions, were used to explore associations between SES indicators and HRQoL. No formal correction for multiple testing was applied. RESULTS: Data from 17,607 respondents were analyzed. In all countries except Italy, individuals with lower education levels reported significantly higher LSS scores. The largest disparity was observed in the UK. In the Netherlands, Sweden, the UK, and the US, lower-income groups also had higher LSS scores, while no such differences were observed in China or Italy. Across all countries, unemployed individuals consistently reported worse HRQoL. Regression analyses confirmed that younger age, chronic conditions, and unemployment were strongly associated with poorer HRQoL. CONCLUSIONS: Substantial SES-related health inequalities in HRQoL were observed during the COVID-19 pandemic, especially in the UK. Work status emerged as a particularly strong and consistent predictor across countries.
Measuring health-related quality of life in sepsis survivors and caregivers: a mapping review and a preliminary conceptual framework.
Chua WL, Cheng LJ, Tan JZ … +1 more , Wang X
Qual Life Res · 2026 Jun · PMID 42260207 · Publisher ↗
PURPOSE: To identify and characterize instruments used to assess post-sepsis syndrome and health-related quality of life (HRQoL) in adult sepsis survivors and/or caregivers, and to map a conceptual HRQoL framework for po...
PURPOSE: To identify and characterize instruments used to assess post-sepsis syndrome and health-related quality of life (HRQoL) in adult sepsis survivors and/or caregivers, and to map a conceptual HRQoL framework for post-sepsis recovery. METHODS: A mapping review was conducted. Eight electronic databases were searched from inception to 19 May 2025 to identify peer-reviewed studies using at least one instrument to assess HRQoL among adult sepsis survivors. Two reviewers independently screened titles, abstracts, and full texts for eligibility. Data were extracted and summarized using tabular and narrative forms. Visual mapping techniques were used to map domain coverage and identify gaps in sepsis-specific instrument validation. RESULTS: Seventy-three studies were included, most originating from the United States (n = 20, 27.8%), Germany (n = 18, 24.7%), and Japan (n = 5, 6.9%). A total of 101 instruments were identified. The most frequently used measures were the 36-Item Short Form Survey (SF-36) (n = 17, 23.3%), WHO/Zubrod score (n = 8, 11.0%) and Posttraumatic Stress Scale (PTSS-10) (n = 8, 11.0%). Nearly all instruments (98.0%) were validated in non-sepsis populations; only the SF-36 and Reintegration to Normal Living Index (RNLI) had undergone validation in sepsis survivors. Cognitive and psychological domains were most commonly assessed, whereas pain, sleep, and fatigue were underrepresented. CONCLUSIONS: Considerable variability exists in post-sepsis HRQoL measurement, with limited sepsis-specific validation. A preliminary framework, derived from this review, highlights the multidimensional nature of post-sepsis recovery and provides a hypothesis-generating foundation for the development of sepsis-relevant patient-reported outcome measures to support survivorship care.
Comparing the measurement properties, informativity and responsiveness of the DLQI, DLQI-Relevant (DLQI-R), and Skindex-29 in patients with chronic skin disease: a prospective cohort study.
Sánchez-Feliciano A, Nock MR, Ershadi S … +1 more , Barbieri JS
Qual Life Res · 2026 Jun · PMID 42260199 · Publisher ↗
PURPOSE: Patient-reported outcome measures (PROMs) are important tools for assessing the impact of skin diseases on health-related quality of life (HRQoL). However, comparative data on the measurement properties of commo...
PURPOSE: Patient-reported outcome measures (PROMs) are important tools for assessing the impact of skin diseases on health-related quality of life (HRQoL). However, comparative data on the measurement properties of commonly used instruments are limited. The objective of this study was to compare the measurement properties of the Dermatology Life Quality Index (DLQI), DLQI-Relevant (DLQI-R), and Skindex-29 in a cohort of patients with chronic skin disease. METHODS: Participants completed the DLQI, Skindex-29, and Patient-Reported Outcomes Measurement Information System (PROMIS) measures at baseline and 3 months. Structural validity was assessed with confirmatory factor analysis; internal consistency with Cronbach's alpha; construct validity via known-groups comparisons and PROMIS correlations; informativity with Shannon's index; and responsiveness with standardized response means, Cohen's d, and change score correlations. RESULTS: Of 549 participants (mean age 37.8 years; 52.3% female), 406 (74.0%) completed follow-up. All instruments demonstrated high internal consistency (α ≥ 0.85) and no floor or ceiling effects. Skindex-29 domains demonstrated stronger structural validity and informativity compared to DLQI and DLQI-R. Construct validity was supported by expected associations with patient global assessment (PtGA) and PROMIS correlations. The DLQI, DLQI-R, and Skindex Symptoms and Emotions showed moderate responsiveness. CONCLUSIONS: The DLQI, DLRI-R and Skindex-29 demonstrated strong measurement properties in a heterogeneous cohort of individuals with chronic skin disease. Skindex-29 showed stronger structural validity and informativity, while the DLQI and DLQI-R demonstrated slightly greater responsiveness. Selection of PROM should depend on the intended clinical or research purpose.
Response shift-adjusted longitudinal assessment of patient-reported outcomes in older people living with HIV: a multilevel structural equation and Rasch analysis.
Gu R, Li J, Jin L … +18 more , Zhu T, Yang Z, Xu X, Zhong Y, Hu J, Weng Y, Zhang F, Cao G, Xie J, Li H, Fu Y, Luo D, Yang S, Shi J, Wang M, Hong D, Chen Z, Wang H
Qual Life Res · 2026 Jun · PMID 42260163 · Publisher ↗
PURPOSE: To investigate the presence and clinical impact of response shift (RS) on longitudinal patient-reported outcome (PRO) assessment among older people living with HIV/AIDS (PLWHA), and to evaluate how not accountin...
PURPOSE: To investigate the presence and clinical impact of response shift (RS) on longitudinal patient-reported outcome (PRO) assessment among older people living with HIV/AIDS (PLWHA), and to evaluate how not accounting for RS may affect the interpretation of changes in PRO at both domain and item levels. METHODS: A two-wave longitudinal survey with a 3-month interval was conducted among older PLWHA (baseline n = 1245; follow-up rate 84.90%) using the PROHIV-OLD instrument. Domain-level RS-including reconceptualization, recalibration, and reprioritization-was examined using Oort's structural equation modeling (SEM) approach. Item-level recalibration was further assessed within the Mental Status domain using the updated ROSALI-Rasch measurement theory (RMT) algorithm, incorporating clinical subgroups defined by diagnostic duration, disease stage, and HIV-1 RNA status. RESULTS: At the domain level, a medium uniform recalibration was detected for Physical Symptoms (Est. = 0.65, Δχ = 86.22), and a small uniform recalibration for Mental Status (Est. = - 0.28, Δχ = 18.47). Family Relationship showed a small reconceptualization (Est.=0.12) and a medium reprioritization (Est. = - 0.58), while the Treatment Dimension exhibited non-uniform recalibration (Δχ = 21.73; all P < 0.05). At the item level, when RS was not accounted for, positive RS was associated with underestimation of Mental Status among newly diagnosed patients (Est. = 0.34), AIDS-stage patients (Est. = 0.09), and those with undetectable HIV-1 RNA (Est. = 0.26), whereas negative RS was associated with overestimation among patients with longer diagnostic duration or earlier clinical stages. CONCLUSION: RS substantially informs longitudinal PRO assessment in older PLWHA. Accounting for RS effects can improve the interpretation of changes in PROs and support more patient-centered clinical evaluation in aging HIV populations.
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