Health And Quality Of Life Outcomes[JOURNAL]
Sun
200 papers
Content validity of the modified EQ-HWB-9 in a sample of Argentinean patients, informal caregivers, and members of the general public.
Belizan M, Ini N, Argento F … +3 more , Herdman M, Mukuria C, Augustovski F
Health Qual Life Outcomes · 2026 Jul · PMID 42399970 · Full text
BACKGROUND: In response to the challenge of measuring the impact of health, social care, and informal caregiving on quality of life, the EuroQol Group developed the Experimental EuroQol Health and Wellbeing (EQ-HWB-9). E...
BACKGROUND: In response to the challenge of measuring the impact of health, social care, and informal caregiving on quality of life, the EuroQol Group developed the Experimental EuroQol Health and Wellbeing (EQ-HWB-9). Evidence from preliminary testing informed a series of revisions to improve the instrument's performance. This study aimed to assess the content validity of the Argentina (Spanish) EQ-HWB-9 Experimental Modified Paper Self-Complete v1.2 (modified EQ-HWB-9), to explore whether its modifications represented an improvement over the earlier experimental version, and to examine how participants ranked the frequency scale response options. METHODS: Qualitative cognitive interviews were conducted using a semi-structured guide with open-ended questions and targeted probes to assess comprehensibility, relevance, and comprehensiveness of the modified EQ-HWB-9. Participants were recruited through purposive sampling via patient associations, retirement centers, and social media. Thematic content analysis was guided by an a priori framework. Participants also completed a response option ordering exercise to compare their rankings with the instrument's frequency scale. RESULTS: Twenty participants were included: patients (n = 12), informal carers (n = 4), and members of the general public (n = 4); nine were also social care users. The median age was 64.5 years (range 25-88) and 12 were women. All participants found the questionnaire easy to understand, items were deemed relevant, and response options appropriate. Some participants noted missing content related to leisure, social relationships, financial situation, and environment, and suggested minor wording revisions. The modified EQ-HWB-9 was generally preferred over the earlier version, supporting better comprehension and alignment with local language and context. In the frequency scale task, "none of the time" and "most or all of the time" were consistently placed at the expected extremes (90% and 85%, respectively), while intermediate labels showed greater variability, with overall ordering showing good alignment with the instrument's scale. CONCLUSION: This study, conducted as part of an international multi-language effort, represents the first content validity assessment of the modified EQ-HWB-9 in Spanish and Latin America. Findings support the instrument's utility, though further refinements to item wording are recommended. Ongoing iterative testing will help ensure the tool reliably measures health and wellbeing to inform policy and practice.
A pre-illness reference reminder alters cross-sectional patient-reported outcome responses: evidence from EQ-5D-5L and EQ-HWB-9.
Ran X, Mu Q, Wang Q … +1 more , Yang Z
Health Qual Life Outcomes · 2026 Jul · PMID 42399963 · Full text
OBJECTIVES: This study aimed to evaluate whether a brief pre-survey reminder prompting patients to reflect on their pre-illness health was associated with altered response patterns in cross-sectional patient-reported out...
OBJECTIVES: This study aimed to evaluate whether a brief pre-survey reminder prompting patients to reflect on their pre-illness health was associated with altered response patterns in cross-sectional patient-reported outcome measures (PROMs). METHODS: A cross-sectional study was conducted among 244 inpatients in a hepatobiliary surgery department. Participants were assigned to a control group (standard recall instructions for the EQ-5D-5L and EQ-HWB-9) or a reminder group (identical instructions, preceded by the reminder). Response distributions were compared descriptively, and adjusted ordered logistic regression models were used to assess the association between the reminder and reported problem severity. RESULTS: A total of 244 inpatients participated, with 123 in the control group and 121 receiving the pre-illness reminder. There were no missing data for the EQ-5D-5L or EQ-HWB-9 items, and EQ VAS data were missing for three participants only. The reminder group reported lower ceiling effects and higher problem severity across both instruments. In adjusted analyses, the reminder was associated with higher odds of reporting more severe problems across all EQ-5D-5L dimensions, with odds ratios ranging from 1.90 to 3.13, and across seven of the nine EQ-HWB-9 items, with odds ratios ranging from 1.94 to 5.43. The reminder group also reported a lower mean EQ VAS score than the control group: 78.23 versus 82.03, p = 0.002. CONCLUSIONS: The brief reminder was associated with more severe and differentiated PROM responses. These findings suggest that a pre-illness reference reminder may influence respondents' appraisal of current health in cross-sectional PROM assessment. However, without an objective benchmark for true health status, the findings should be interpreted as consistent with, but not definitive evidence of, a recalibration-related response process.
Comparative exploration of EQ-5D-5L bolt-on variants for fatigue, sleep, and vision in a general population sample.
Xu RH, Ma Y, Yang C … +1 more , Rencz F
Health Qual Life Outcomes · 2026 Jul · PMID 42387500 · Full text
OBJECTIVE: Fatigue, sleep, and vision are among the most commonly used EQ-5D-5 L bolt-ons, with multiple alternative wordings. This study aimed to evaluate and compare the psychometric performance of the following bolt-o...
OBJECTIVE: Fatigue, sleep, and vision are among the most commonly used EQ-5D-5 L bolt-ons, with multiple alternative wordings. This study aimed to evaluate and compare the psychometric performance of the following bolt-on variants: (1) fatigue (FA) vs. tiredness (TI); (2) vision (VI) vs. VI with reference to vision aids (VI-A); and (3) sleep (SL) vs. sleep with examples in the dimension title (SL-E). METHODS: A representative sample of 1,262 adults in Hong Kong completed an online survey including the EQ-5D-5 L and bolt-ons. The following psychometric properties were assessed: ceiling/floor, informativity (Shannon's indices), convergent validity (correlations with conceptually related items of PROMIS-29 + 2), agreement (Kendall's tau), explanatory power (regression on EQ VAS and PROMIS-29 + 2 Level Sum Scores), and known-group validity (effect sizes). RESULTS: Bolt-ons reduced EQ-5D-5 L's ceiling from 35% to 20-24% and improved relative informativity from 0.33 to 0.35-0.36. FA, TI, SL and SL-E demonstrated moderate-to-strong convergent validity (r = 0.55-0.67) with PROMIS-29 + 2 items. All bolt-ons with the exception of VI-A enhanced explanatory power for both EQ VAS and PROMIS-29 + 2. Agreements between TI and FA (0.71), SL and SL-E (0.74), and VI and VI-A (0.78) were strong. For each of the three bolt-on pairs, differences in reducing the EQ-5D-5 L's ceiling, relative informativity and convergent validity were generally small. In known-group comparisons, FA and SL-E outperformed their counterparts, whereas the difference between VI and VI-A was minimal. CONCLUSION: All six bolt-on items showed good validity in a general population sample, with minimal differences between items belonging to the same bolt-on pair. These findings inform item development for the experimental EQ-5D Bolt-on Toolbox.
Validation of the EQ-HWB-9 in a mental health sample and an investigation of modifications to items.
Bailey C, Trapani K, Davies JN … +3 more , Van Dam NT, Galante J, Peasgood T
Health Qual Life Outcomes · 2026 Jun · PMID 42381072 · Full text
BACKGROUND: The EQ Health and Wellbeing (EQ-HWB) is a new, generic instrument designed to evaluate quality-of-life across health, public health, and social care settings. The short form comprises nine items (EQ-HWB-9) an...
BACKGROUND: The EQ Health and Wellbeing (EQ-HWB) is a new, generic instrument designed to evaluate quality-of-life across health, public health, and social care settings. The short form comprises nine items (EQ-HWB-9) and validation across diverse populations and contexts is required. We aimed to investigate the validity of the EQ-HWB-9 in an international sample of adults experiencing poor mental health who downloaded a meditation app. We further examined the impact of four item-level modifications on psychometric performance, including investigating a potential ordering effect for the 'activities' item (hypothesised in prior studies) and three minor changes to response options. METHODS: The current study was embedded in a larger trial examining engagement with meditation via a free, downloadable app. Participants were randomised to complete the original (2022) and modified (2024) experimental version of the EQ-HWB-9. Psychometric evaluation included analyses of item distribution, known group and convergent validity, and responsiveness to change. RESULTS: There were no differences in demographic characteristics between the EQ-HWB original and modified versions at baseline (n = 865) or follow-up (n = 130). All psychometric tests supported the validity of the EQ-HWB-9 in this population. We found an ordering effect for the activities item, where the activities item showed a greater level of difficulty and a wider distribution over response options when asked before the mobility item, rather than after. There were no observable differences between versions for the other modifications. CONCLUSIONS: These findings add to growing literature supporting the EQ-HWB-9 as a suitable instrument for measuring quality-of-life across a range of settings. When the 'activities' item was presented first, as in the modified version, participants appeared to interpret the item more broadly, in line with the developers' intentions. Accordingly, our results support changing the item order of the first two items. Other modifications had little impact on outcomes, suggesting that further qualitative research will be required to inform decisions about their inclusion. Results from this study provide support towards finalisation of the instrument. The development of country-specific value-sets is now critical to support its application in economic evaluation.
A randomised equivalence study of the EQ-5D-5L Shona versions: evaluation of measurement equivalence between digital and paper formats.
Dambi JM, Purba FD, Shava BK … +6 more , Hove AR, Doyce SR, Tunduwani T, Domingue B, Chibanda D, Pickard AS
Health Qual Life Outcomes · 2026 Jun · PMID 42374495 · Full text
INTRODUCTION: Routine assessment of health-related quality of life (HRQoL) of people living with HIV (PLHIV) is essential. We evaluated measurement equivalence between the digital and paper versions of the Shona EQ-5D-5L...
INTRODUCTION: Routine assessment of health-related quality of life (HRQoL) of people living with HIV (PLHIV) is essential. We evaluated measurement equivalence between the digital and paper versions of the Shona EQ-5D-5L and examined known-groups validity. METHODS AND MATERIALS: We conducted a parallel randomised study in Zimbabwe with 700 participants allocated equally to the digital and paper groups. RESULTS: The study included 611 participants with a mean age of 37.5 years (SD 12.2). Most were female (70.7%), had secondary education (67.9%), and reported financial inadequacy (68.7%). The digital and paper versions of the EQ-5D-5L Shona demonstrated measurement equivalence. Older age (AOR = 0.60; 95% CI 0.41-0.88; p = 0.008), food insecurity (AOR = 1.80; 95% CI 1.20-2.80; p = 0.01), financial insecurity (AOR = 1.72; 95% CI 1.10-2.69; p = 0.017), and elevated CMD symptoms (AOR = 0.45; 95% CI 0.29-0.68; p < 0.001) were associated with lower HRQoL. CONCLUSION: This study demonstrated measurement equivalence between the digital and paper versions of the EQ-5D-5L Shona. Both versions can therefore be used confidently in routine clinical care and research. The findings also highlight the need for tailored interventions to improve HRQoL among PLHIV.
Childhood visual impairment and health-related quality of life in Ghana: evidence from a cross-sectional study.
Mensah NAO, Boateng JA, Osei Duah Junior I … +7 more , Andoh AKA, Osei GC, Kyeremeh S, Agyekum S, Agbeshie GK, Eisenbarth W, Akuffo KO
Health Qual Life Outcomes · 2026 Jun · PMID 42365291 · Full text
BACKGROUND: Although visual impairment (VI) is known to affect children's development, there is limited evidence on how VI influences health-related quality of life (HRQoL) among children in Ghana. This study aimed to as...
BACKGROUND: Although visual impairment (VI) is known to affect children's development, there is limited evidence on how VI influences health-related quality of life (HRQoL) among children in Ghana. This study aimed to assess the relationship between childhood VI and HRQoL. METHODS: A cross-sectional study was conducted among children aged 2 to 18 years in selected districts of the Ashanti Region, Ghana. Comprehensive ocular assessments including visual acuity (VA), refraction, and anterior and posterior segment evaluations were performed. Health-related quality of life was measured using the PedsQL 4.0 across physical, emotional, social, and school functioning domains. Data were analyzed using descriptive statistics, independent-sample t-tests, and linear regression. RESULTS: A total of 581 children participated (mean ± SD age: 8.64 ± 4.00 years), with females representing 53.0% of the sample. Both child-reported and parent-reported scores showed significantly reduced HRQoL among children with VI across all PedsQL domains compared with children without VI, with school (p < 0.001) and emotional (p = 0.005) functions of child-reported showing statistical significance. Presenting VI was a significant predictor of poor overall HRQoL in both simple (β= -10.351, p < 0.001) and multiple linear regression models (β= -5.650, p = 0.016). No significant associations (p > 0.05) were found between HRQoL and sociodemographic variables, including sex, age, ethnicity, work status, and health insurance. CONCLUSIONS: Childhood VI is associated with substantial reductions in multiple dimensions of HRQoL. These findings underscore the need to strengthen early detection, clinical management, and school-based vision support services to improve pediatric eye care in Ghana.
A multicenter longitudinal study on development and validation of the quality of life scale QLICD-DM (V2.0) for diabetes mellitus based on classical test theory and generalizability theory.
Liu Y, Zhou C, Guo R … +4 more , Zhang X, Zhang Q, Wan C, Chen R
Health Qual Life Outcomes · 2026 Jun · PMID 42363272 · Full text
PURPOSE: Quality of life (QOL) research in diabetes has long been a concern with many specific instruments being developed, but no scale for diabetes has been developed based on the modular approach. This study aimed to...
PURPOSE: Quality of life (QOL) research in diabetes has long been a concern with many specific instruments being developed, but no scale for diabetes has been developed based on the modular approach. This study aimed to develop and validate the Diabetes Mellitus Scale of the System of Quality of Life Instruments for Chronic Diseases QLICD-DM (V2.0) by a modular approach and mixed methods. METHODS: The Scale was developed based on procedural decision-making methods and by combining the general module and the specific module. The instrument was used to assess the quality of life of 242 diabetic patients both before and after treatments. Under Classical Test Theory (CTT), the psychometric properties of the scale were assessed with regard to validity, reliability and responsiveness by correlation analyses, structural equation modeling, as well as t-tests. In addition, G-study and D-study in Generalizability Theory (GT) were used to validate the scale further. RESULTS: The QLICD-DM (V2.0) was developed with a 14-item specific module and a 28-item general module in the final scale. For all domains, Cronbach's α values were greater than 0.70 with the exception of physical function (0.68), the test-retest reliability correlations r and ICCs were greater than 0.80 with the exception of physical and social function (0.65,0.64). The theoretical construct was supported by correlation analyses and confirmatory factor analysis using structural equation modeling, which demonstrated good construct validity. There were significant differences (P < 0.05) in the domains of physical function, specific module and the total scale before and after treatments. The standardized response means (SRMs) of the physical, psychological, social, and the specific module were 0.36, 0.14, 0.11 and 0.28 respectively. All G-coefficients were all greater than 0.70 with the exception of the physical domain (0.683), further confirming the reliability of the scale further. The overall error was found to be small in the G-study and in the D-study, indicating a high level of accuracy. CONCLUSION: The QLICD-DM (V2.0) not only integrated characteristics of generic and disease-specific instruments but also demonstrated good reliability, validity, and moderate responsiveness, and it could serve as a quality of life assessment tool for diabetes patients.
Investigating the impact of chronic graft‑versus‑host disease on patient health‑related quality of life: perspectives from patients and carers.
Ecsy K, Skinner L, Furze M … +8 more , Hart D, Heron CS, Page A, Dempsey L, Adnan A, Sil A, Hudson RDA, Bradberry M
Health Qual Life Outcomes · 2026 Jun · PMID 42351209 · Full text
BACKGROUND: Chronic graft-versus-host disease (cGvHD) is a common complication that can occur following hematopoietic stem cell transplantation. This complex, multisystemic condition often requires multiple lines of ther...
BACKGROUND: Chronic graft-versus-host disease (cGvHD) is a common complication that can occur following hematopoietic stem cell transplantation. This complex, multisystemic condition often requires multiple lines of therapy to treat both the symptoms of cGvHD and the side effects associated with these treatments. Comprehensive data on the impact of cGvHD on health-related quality of life (HRQoL) of patients who have undergone multiple lines of therapy, remain limited. Greater awareness of these challenges could lead to more personalized treatment plans and inform future research. METHODS: We performed a two-part study to gather qualitative and quantitative data on the experiences and HRQoL of adult patients with cGvHD who had received more than two lines of therapy. Participants took part in a virtual, in-depth interview moderated by a facilitator (qualitative interviews) and/or an online survey (quantitative survey). The qualitative interviews were conducted using a discussion guide, while the quantitative survey designed based on the responses to the qualitative interview also included the European Quality of Life 5 Dimensions 5 Level Version questionnaire. RESULTS: The qualitative interview included 10 participants, while the quantitative survey enrolled 27. patients reported that cGvHD has a profound impact on numerous aspects of HRQoL. Treatment side effects, treatment burden, frequency of medical appointments, and the impact on daily life, finances, education, and mental health were all contributors to diminished HRQoL. Patients reported feeling unprepared for the severity and longevity of cGvHD symptoms and highlighted the need for improved communication between healthcare professionals (HCPs) treating the same patient. CONCLUSIONS: cGvHD significantly impacts the HRQoL of patients, with physical, emotional, and financial burdens. Improved education and disease awareness, personalized treatment plans, and better communication between HCPs treating the same patient are crucial to address these challenges in current care practices. Enhanced support services could alleviate the emotional and financial impact on patients, ultimately improving their overall quality of life (QoL).
Adverse childhood experiences and well-being in middle-aged men in South Korea: mediating role of andropause symptoms.
Park J, Kim Y, Lee H
Health Qual Life Outcomes · 2026 Jun · PMID 42332698 · Full text
BACKGROUND: Middle-aged men in South Korea are in a critical period marked by significant physical and psychosocial transitions. While adverse childhood experiences negatively affect lifelong health, the specific mechani...
BACKGROUND: Middle-aged men in South Korea are in a critical period marked by significant physical and psychosocial transitions. While adverse childhood experiences negatively affect lifelong health, the specific mechanisms affecting well-being during midlife remain underexplored. This study aimed to examine the mediating role of andropause symptoms in the relationship between adverse childhood experiences (ACEs) and well-being. METHODS: A cross-sectional survey involving 444 community-dwelling Korean men aged 40-64 years was conducted from June to August 2024. Data were collected via an online questionnaire to assess ACEs, andropause symptoms, and well-being. The SAS 9.4 and PROCESS macro were used for data analysis. RESULTS: The participants had a mean age of 50.8 years. High levels of well-being were significantly associated with being married, higher educational attainment, and higher income. Participants reporting high ACEs had significantly lower levels of well-being than those reporting no ACEs. In the mediating analysis, the indirect effect of andropause symptoms on the relationships between ACEs and well-being was statistically significant (β = -0.08, 95% CI = -0.109 to -0.053). This finding suggests that andropause symptoms partially mediate the relationship between ACEs and well-being in middle-aged men. CONCLUSIONS: Andropause symptoms appeared to partially mediated the relationship between ACEs and well-being in middle-aged Korean men. Although both ACEs and andropause symptoms are associated with midlife well-being, they have rarely been addressed together. Community-based programs combining trauma-informed counseling and andropause management are needed to improve well-being in middle-aged men.
Patient and carer treatment preferences for oral medication in chronic kidney disease: a discrete choice experiment across eight countries.
Fifer S, Esposito C, Correa-Rotter R … +8 more , Wu MS, Reichel H, Elsayed HM, Sanchez JJG, Pentakota S, Kularatne T, Hull R, Chadban S
Health Qual Life Outcomes · 2026 Jun · PMID 42323675 · Full text
BACKGROUND: Chronic Kidney Disease (CKD) affects over 674 million people globally and can lead to kidney failure, which significantly impairs quality and duration of life. While various oral pharmacological treatment opt...
BACKGROUND: Chronic Kidney Disease (CKD) affects over 674 million people globally and can lead to kidney failure, which significantly impairs quality and duration of life. While various oral pharmacological treatment options are available, limited research exists on how patients and carers prioritise treatment attributes. This study explored preferences for oral CKD medication across eight countries, involving 2,324 participants (1,511 patients and 813 carers). METHODS: A Discrete Choice Experiment (DCE) was conducted in which participants completed seven hypothetical scenarios, each with two unlabelled treatment options and a "neither" (or "stay on current treatment") option. Five attributes were assessed: delay in dialysis or transplant, life extension, reduced risk of heart failure hospitalisation, risk of side effects, and out-of-pocket costs. Data were analysed using Mixed Multinomial Logit models, generating separate patient and carer models for each country (16 models), enabling cross-country comparisons. RESULTS: Participants across countries placed the highest importance on delaying dialysis or transplant, followed by life extension, with minimising treatment side effects ranked next. They preferred longer delays for dialysis or transplant, with the seven-year delay being most preferred. Regional and patient-carer variations were observed in attribute importance. Model parameters were used to calculate utility for treatment profiles and simulate preference shares, enabling country-level comparisons. CONCLUSION: Patients and carers consistently prioritised oral medications that delay the need for dialysis or transplant and extend life, although the relative importance of these attributes differed by country and respondent group. The choice of oral medication in CKD is preference-sensitive, and these results have direct implications for shared decision-making in clinical practice. To support application of these findings, we have developed an interactive dashboard that simulates the impact of medication attributes on predicted uptake across all eight countries: https://cappre.shinyapps.io/CKD_Dapa_DCE/.
Exploring perceptions of digital patient reported outcome measures: a multi-site qualitative case study in four European oncology outpatient clinics.
Cresswell K, Jacobs A, Scherrens AL … +13 more , Rosquin L, Luyten JA, Lundereng ED, Freitas-Durks V, Warrington L, Lundeby T, Hjermstad MJ, Williams R, Beernaert K, Mitrea N, Kurita GP, Fallon M, Kaasa S
Health Qual Life Outcomes · 2026 Jun · PMID 42321837 · Full text
BACKGROUND: Digital Patient Reported Outcome Measures (PROMs) can help to promote patient-centred care (PCC). However, they are currently not routinely used, potentially compromising patient outcomes. In this work we sou...
BACKGROUND: Digital Patient Reported Outcome Measures (PROMs) can help to promote patient-centred care (PCC). However, they are currently not routinely used, potentially compromising patient outcomes. In this work we sought to (i) explore existing processes, patient and healthcare professionals' (HCP) perceptions of current gaps in PCC and (ii) their views on how a PROMs-based digital system could help to address these gaps in four European oncology outpatient clinics. METHODS: We conducted a qualitative multi-site case study including healthcare staff (organisational leaders, managers and HCPs), patients being treated for cancer and caregivers in four outpatient clinics in Brussels (Belgium), Edinburgh (United Kingdom), Oslo (Norway), and Valencia (Spain). Data were collected through a series of semi-structured interviews to explore existing work practices, needs and attitudes. We also conducted non-participant observations of staff meetings and clinic activities to explore existing processes. Data were analysed through a mixture of inductive and deductive approaches drawing on the Technology, People, Organizations, and Macroenvironmental (TPOM) factors framework. RESULTS: We conducted 99 interviews with HCPs, patients and caregivers and 30 observations across the four sites. PCC was regarded as important across all sites. We observed limited existing efforts on systematically recording psychosocial needs of patients. Participants reported concerns that a new digital system to record PROMs may result in increased workloads for clinical staff and adversely impact patient-clinician relationships. Attitudes were influenced by previous experience with digital systems. Organisational leadership and support were viewed as crucial in facilitating adoption, including efforts to train and engage clinical and patient users, making available sufficient resources, and including end-users in system design. CONCLUSIONS: While digital PROMs have the potential to enhance PCC in cancer, their routine use is often hindered by sociotechnical challenges. This issue persists across different countries. Success in developing and implementing digital PROMs will require tailored system design and implementation strategies being cognisant of various stakeholder needs. This may include supplementing technological aspects of interventions with educational strategies, supporting local adaptations of designs, and aligning with clinician and organisational drivers for implementation.
Population-based changes in oral health-related quality of life in Australia.
Ju X, Luzzi L, Jamieson LM
Health Qual Life Outcomes · 2026 Jun · PMID 42321820 · Full text
BACKGROUND: Good oral health is crucial for overall well-being; yet many people experience pain, discomfort, or social difficulties due to oral problems. Understanding how Australians' oral health and quality of life hav...
BACKGROUND: Good oral health is crucial for overall well-being; yet many people experience pain, discomfort, or social difficulties due to oral problems. Understanding how Australians' oral health and quality of life have changed over time helps identify whether national dental policies and access to care have improved. The study aimed to assess temporal changes in oral health-related quality of life (OHRQoL) and identify associated risk indicators using the short Oral Health Impact Profile (OHIP-14) instrument among Australian adults. METHODS: Data were sourced from the two most recent nationally representative surveys in Australia: National Survey of Adult Oral Health, NSAOH-1 (2004-06) and NSAOH-2 (2017-18). Both are population-based cross-sectional studies conducted in Australia, targeting adults aged 15 years and older. The outcome of interest was oral health-related quality of life (OHRQoL), measured using the validated short-form Oral Health Impact Profile (OHIP-14). Survey-weighted negative binomial regression models were employed to estimate both unadjusted and adjusted mean ratios (MRs) and their 95% confidence intervals (CIs) for OHIP-14 scores. Blinder-Oaxaca decomposition analysis was used to assess the contribution of changes in measured population characteristics to differences in mean OHIP-14 scores between two surveys. RESULTS: In total, 4,170 participants completed the OHIP-14 questionnaire in 2004-06, and 2,836 did so in 2017-18. Between the two survey waves, the mean OHIP-14 score decreased from 7.3 to 5.5. After adjusting for all covariates, participants in NSAOH-1 had a 61% higher mean OHIP-14 score compared to those in NSAOH-2 (MR = 1.61; 95% CI: 1.53-1.70). Higher OHIP-14 scores were found among older adults, lower-educated, lower-income individuals, those with poorer health, smokers, frequent toothache sufferers, and people whose last dental visit was for a problem. The decomposition analysis showed that 41% of the difference in mean OHIP-14 scores was explained by measured population characteristics, Household income, and usual reason for dental visiting made the largest contributions to the explained component (80%), followed by smoking status (15%) and education level (9%). CONCLUSION: OHRQoL among Australian adults improved over 14 years, reflected by lower mean OHIP-14 scores in NSAOH-2 than NSAOH-1. However, poorer OHRQoL remained associated with older age, female sex, socioeconomic disadvantage, poorer self-rated health and oral health, smoking, toothache, and problem-oriented dental visiting. Decomposition analysis suggested that changes in income and dental visiting patterns partly explained this improvement.
Translation, cultural adaptation, and psychometric validation of the simplified Chinese EORTC QLQ-SH22 among cancer patients.
Du YM, Lu J, Zhang H … +3 more , Huang Q, Wang BH, Liu L
Health Qual Life Outcomes · 2026 Jun · PMID 42316204 · Full text
BACKGROUND: Sexual health is a critical aspect of quality of life in cancer patients. The EORTC QLQ-SH22 (SH22) assesses sexual health-related quality of life (SH-QoL), but no Simplified Chinese version has been validate...
BACKGROUND: Sexual health is a critical aspect of quality of life in cancer patients. The EORTC QLQ-SH22 (SH22) assesses sexual health-related quality of life (SH-QoL), but no Simplified Chinese version has been validated. This study aimed to translate and culturally adapt the SH22 into Simplified Chinese (SH22-C) and to evaluate its psychometric properties in mainland Chinese cancer patients. METHODS: This study comprised two phases. Phase I involved translation and cultural adaptation of the SH22, following the standardized EORTC translation procedure to ensure clarity and cultural relevance. Phase II was a cross-sectional survey in outpatient oncology clinics of a tertiary hospital in mainland China, with 270 adults completing the SH22-C and 30 participants completing a retest after 2 weeks. Psychometric properties assessed included internal consistency, test-retest reliability, structural validity, and convergent/discriminant validity. RESULTS: Cognitive interviews led to revisions of ambiguous sexual activity terms, with no further changes in the second round. Phase II demonstrated excellent internal consistency (Sexual Satisfaction α = 0.93; Sexual Pain α = 0.81) and good test-retest reliability (intraclass correlation coefficients = 0.86 and 0.84, respectively; single-item r = 0.73-0.88). Confirmatory factor analysis confirmed a two-factor structure with acceptable fit and factor loadings of 0.62-0.92. Strong convergent validity and low inter-factor correlation (r = - 0.26) supported discriminant validity. CONCLUSIONS: The SH22-C showed good cultural equivalence, reliability, and validity in mainland Chinese cancer patients and provides a valid and practical tool for assessing SH-QoL.
Preference-based measures in people with dementia: a systematic review of psychometric properties.
Lamé A, Heijdra Suasnabar J, Adam E … +4 more , Handels R, Smaling HJA, Haaksma ML, van den Akker-van Marle ME
Health Qual Life Outcomes · 2026 Jun · PMID 42310655 · Full text
PURPOSE: Accurate measurement of health and well-being outcomes is essential for economic evaluations of dementia care interventions. However, the suitability of existing preference-based measures (PBMs) for people with...
PURPOSE: Accurate measurement of health and well-being outcomes is essential for economic evaluations of dementia care interventions. However, the suitability of existing preference-based measures (PBMs) for people with dementia remains uncertain. This review aims to provide guidance in measurement choice by assessing the psychometric properties of PBMs in people with dementia. METHODS: A systematic review was conducted of studies indexed in PubMed, Embase, PsycINFO and Web of Science up to July 2025. Studies were eligible if they evaluated psychometric properties of PBMs in people with dementia. Title and abstract screening were performed using a validated AI-powered tool, ASReview. The quality of the included studies and psychometric properties of the PBMs were assessed using the COSMIN methodology. RESULTS: A total of 21,347 records were identified, of which 32 studies covering fourteen different PBMs were included. The EQ-5D-3L was used in most studies, and studies focused mainly on construct validity and reliability. Study quality was predominantly high, while most psychometric evidence was inconsistent or insufficient. The ICECAP-O and HUI2 demonstrated the most appropriate psychometric evidence. CONCLUSION: Evidence of psychometric properties of PBMs is insufficient for some measures and limited for other measures. Therefore, none can yet be recommended as fully appropriate for use in people with dementia. This underscores the need for further validation studies to improve preference-based outcome measurement, and to strengthen economic evaluations of dementia care interventions.
Measuring health-related quality of life and well-being in adults with fecal incontinence: a comparative psychometric evaluation.
Groen SR, Keszthelyi D, Weerts ZZRM … +3 more , Assmann SL, Breukink SO, Essers BAB
Health Qual Life Outcomes · 2026 Jun · PMID 42304462 · Full text
BACKGROUND: While traditional disease-management regarding fecal incontinence (FI) primarily focuses on symptom-control and health-related quality of life (HrQoL) outcomes, patients often prioritize broader aspects of he...
BACKGROUND: While traditional disease-management regarding fecal incontinence (FI) primarily focuses on symptom-control and health-related quality of life (HrQoL) outcomes, patients often prioritize broader aspects of health, like well-being. This study evaluates the psychometric performance of ICEpop CAPability measure for Adults (ICECAP-A), a capability-based well-being instrument, alongside two established HrQoL-instruments, EQ-5D-5L and the FI quality of life (FIQL) questionnaire, in an outpatient-population with FI. METHODS: Data were obtained from patients with FI recruited from a randomized-controlled trial evaluating the efficacy of anal plugs for FI ((The CONFIDEnCE trial, NCT04657588). Psychometric evaluation of ICECAP-A involved the assessment of the convergent validity, known-group validity (examined across predefined subgroups), acceptability, and floor and ceiling effects. RESULTS: Among 72 participants (mean age 67.3years; 83.3% female), the mean ICECAP-A capability score (0.86, scale 0-1) exceeded the mean EQ-5D-5L utility (0.71, scale - 0.446-1) and the FIQL score (2.34, scale 1-5). ICECAP-A showed good convergent validity (76.6% predefined hypotheses confirmed). Known-group validity was comparable across instruments; ICECAP-A demonstrating significant differences by EQ-VAS, anxiety, and education level, but not outperforming EQ-5D-5L or FIQL. EQ-5D-5L showed stronger effect sizes for anxiety (p < 0.001), depression and symptom severity (non-significant), while FIQL was stronger for education level (p = 0.002). Questionnaire completion was 84.7% overall, reflecting trial dropout only (100% among completers) with no substantial floor or ceiling effects. CONCLUSIONS: In patients with FI, ICECAP-A showed psychometric performance comparable to EQ-5D-5L and FIQL, despite its broader conceptual scope. Well-being appeared less influenced by symptom severity, possibly reflecting coping or adaptation. Further research is warranted evaluating ICECAP-A's psychometric advantage over traditional HrQoL-instruments in this clinical context. TRIAL REGISTRATION: Not applicable.
How health literacy and eHealth literacy influence quality of life in older adults with chronic diseases: a network and path analysis.
Zou H, Zhou S, Jin L … +5 more , Xie L, Wang Y, Shi H, Zhang L, Li H
Health Qual Life Outcomes · 2026 Jun · PMID 42298634 · Full text
BACKGROUND: Despite existing research on factors influencing quality of life (QOL) in older adults with chronic diseases, the underlying mechanisms by which health literacy (HL) and e-health literacy (eHL) contribute to...
BACKGROUND: Despite existing research on factors influencing quality of life (QOL) in older adults with chronic diseases, the underlying mechanisms by which health literacy (HL) and e-health literacy (eHL) contribute to QOL improvement remain underexplored. This study aimed to elucidate the complex relationships among HL, eHL, health behaviors, psychosocial factors, and QOL, and to identify the driving pathways of HL and eHL in enhancing QOL. METHODS: A cross-sectional study was conducted between March and June 2025 at a tertiary hospital in Xi'an, China. A total of 304 older adults with chronic diseases participated in the study. Participants completed assessments for HL, eHL, cognitive function, frailty, nutrition, physical activity, sleep quality, family function, depression, and QOL (including Physical and Mental Component Summaries, PCS and MCS). Grip strength was also measured. Multiple linear regression, network analysis, and path analysis were employed to determine influencing factors and structural relationships. RESULTS: Higher HL and eHL levels were associated with younger age, higher socioeconomic status, longer daily smartphone usage, and having personal interests; HL was additionally linked to better family function. Network and path analyses revealed that depression, frailty, physical activity, grip strength, and family function were primary direct predictors of QOL, PCS and MCS. Depression and frailty were identified as key risk factors, while sleep quality and nutritional status served as significant mediators. Although HL and eHL did not directly influence QOL, they functioned as upstream variables that indirectly improved QOL by positively influencing these intermediary health behaviors and psychosocial factors. CONCLUSIONS: HL and eHL indirectly enhance QOL in older adults with chronic diseases by driving improvements in health behaviors and psychological status. Interventions should target depression, frailty, sleep quality, and nutrition as critical modifiable factors. Future programs aiming to improve HL and eHL should prioritize older individuals with low socioeconomic status and limited digital experience, incorporating age-friendly designs, social interaction, and family involvement.
Predicting poor health-related quality of life among Chinese adolescents using explainable machine learning: the role of school adjustment, family context, and lifestyle factors.
Zhao L, Gao Y, Liu C … +10 more , Zhang Z, Yang Y, Hu Y, Sui W, Ma S, Zhang S, Lai X, Wang Z, Yang Z, Yi X
Health Qual Life Outcomes · 2026 Jun · PMID 42271444 · Full text
BACKGROUND: Adolescents' health-related quality of life (HRQoL) is influenced by multiple domains, including school, family, and individual lifestyle. However, evidence remains limited on accurately predicting adolescent...
BACKGROUND: Adolescents' health-related quality of life (HRQoL) is influenced by multiple domains, including school, family, and individual lifestyle. However, evidence remains limited on accurately predicting adolescent HRQoL and identifying modifiable determinants. This study aimed to develop a machine-learning prediction model for adolescent HRQoL and to determine key contextual factors associated with low quality of life. METHODS: This cross-sectional study included 20,236 adolescents (51.71% female; mean age 15.97 years). HRQoL was assessed using the validated Quality of Life Scale for Children and Adolescents (QLSCA). Twenty predictors covering school adjustment, family characteristics, and health behaviours were entered into 9 machine-learning classifiers and logistic regression. Feature contributions were examined using permutation importance, partial dependence plots (PDPs), and SHapley Additive exPlanations (SHAP). Stratified analyses by sex and school stage were conducted to identify group-specific determinants. RESULTS: School adjustment was the primary predictor of HRQoL, with self-management and peer relations contributing most. Family factors ranked next, particularly more frequent exercise with parents, which was associated with higher HRQoL. Among lifestyle behaviours, higher physical activity and healthier dietary patterns were associated with better HRQoL, whereas excessive screen time was associated with poorer HRQoL. In stratified analyses, peer relations and physical activity were more influential among boys, while self-management, exercising with parents, and adequate sleep contributed more among girls. Middle school students showed more adverse associations with disruptive/antisocial behaviours and screen time, whereas high school students derived greater benefits from family interaction and health behaviours. CONCLUSIONS: Explainable machine-learning analyses highlight school adjustment as a central correlate of adolescent HRQoL, alongside family characteristics and health behaviours. These findings provide multidimensional evidence to support targeted interventions in educational, family, and public health settings to improve adolescents' HRQoL.
Exploring spiritual health among South Korean older adults using the ICECAP-O measure: a cross-sectional study.
Chen Y, Ahmad I, Shirayama Y … +3 more , Okamoto M, Nam EW, Yuasa M
Health Qual Life Outcomes · 2026 Jun · PMID 42265775 · Full text
BACKGROUND: Spiritual Health (SH) is regarded as a factor that influences an individual's overall well-being. SH is about finding meaning, having a sense of purpose, and feeling inner peace. At the same time, the holisti...
BACKGROUND: Spiritual Health (SH) is regarded as a factor that influences an individual's overall well-being. SH is about finding meaning, having a sense of purpose, and feeling inner peace. At the same time, the holistic health viewpoints stress their proximity to human capability and the entirety of life's quality. OBJECTIVE: The present study sought to determine the relationship between capabilities and subjective well-being in older adults using the ICECAP-O (ICEpop CAPability measure for older people) instrument and also examined the role of the SH measured by PIL (Purpose in Life) as a moderator of the ICECAP-O capability outcomes. METHODS: This cross-sectional study was a paper-based questionnaire survey targeting 300 older adults aged 65 and over from Wonju and Yeoju, South Korea. The demographic characteristics, health perception, ICECAP-O result and PIL score were collected. Exploratory Factor Analysis (EFA) identified latent dimensions such as HP, IL and ELS. OLS and Pearson correlation were performed on the ICECAP-O tariff, EFA factors, and PIL scores. Stata 18 was used, with a significance level set at p < 0.05. RESULTS: The mean PIL score was 98.5 ± 15.6, which represents moderate well-being. Regression analyses revealed significant effects of the 3 from 5 EFA factors, including HP (β = -0.09, p < 0.001), IL (β = 0.03, p < 0.05), and ELS (β = -0.03, p < 0.05) on the ICECAP-O tariff. PIL scores significantly and positively correlated with ICECAP-O tariff (r = 0.44, p < 0.001), with HP showing a noteworthy moderating effect (β = 0.05, p < 0.01). CONCLUSION: The PIL score is a positive predictor of ICECAP-O among South Korea older adults, suggesting that a better sense of purpose improves capability and quality of life. Further research is needed to examine the applicability of this capability instrument across different countries and cultural contexts for spiritual health.
Health-related quality of life and its associated factors among patients with neuromyelitis optica spectrum disorder in China: a questionnaire survey analysis.
Jiang W, Yan S, Xie S … +1 more , Wu J
Health Qual Life Outcomes · 2026 Jun · PMID 42249391 · Full text
BACKGROUND: To assess the health-related quality of life (HRQoL) of Chinese Neuromyelitis optica spectrum disorder (NMOSD) patients, and to explore the influencing factors. METHODS: An online survey was conducted among p...
BACKGROUND: To assess the health-related quality of life (HRQoL) of Chinese Neuromyelitis optica spectrum disorder (NMOSD) patients, and to explore the influencing factors. METHODS: An online survey was conducted among patients with NMOSD in China from May to June 2024. Data on socio-demographic characteristics, clinical characteristics, healthcare resource utilization, and HRQoL measured by EQ-5D-5 L were collected. Multivariable linear regression analysis was performed to identify factors associated with HRQoL. RESULTS: A total of 336 patients with NMOSD (mean age 40.4 years; 89.3% female) were included in the analysis. The EQ-5D-5 L utility value was 0.665 ± 0.335 (mean ± SD). NMOSD patients most frequently reported problems in anxiety/depression whereas self-care was least affected; the proportion reporting no problems was 14.9% and 75.9%, respectively. According to multivariable linear regression analyses, older age, a greater number of comorbidities and chronic diseases, functional impairment (disability, difficulty walking), and higher caregiving needs were independently associated with lower HRQoL, whereas higher treatment satisfaction score and higher income (≥ 5000 CNY) were associated with higher HRQoL. Relapse status was not independently associated with HRQoL after adjustment for disease duration and current functional impairment. CONCLUSIONS: Chinese NMOSD patients experience substantially decreased HRQoL. Functional impairment and caregiving dependence are the main determinants of HRQoL, highlighting the need for patient-centered management beyond relapse prevention.
Qualitative assessment of content validity of the modified EQ-HWB-9 by patients, caregivers, and social care users in the United States.
Nazari JL, Pickard AS, Yu J … +1 more , Kuharic M
Health Qual Life Outcomes · 2026 Jun · PMID 42249388 · Full text
BACKGROUND: The EQ-HWB-9 is a measure designed to capture health, social care, and caregiver-related quality of life across relevant populations. As part of ongoing development, modifications have been made to item wordi...
BACKGROUND: The EQ-HWB-9 is a measure designed to capture health, social care, and caregiver-related quality of life across relevant populations. As part of ongoing development, modifications have been made to item wording, response scales, and layout informed by international collaborations. Qualitative evidence to support the content validity of the modified EQ-HWB-9 in the United States (US) is important to support its use in this major market. This study evaluated the comprehensibility, relevance, and comprehensiveness of the modified EQ-HWB-9 in US adults. METHODS: US adults with chronic health conditions, serving as unpaid caregivers, and/or social care users were purposively recruited through an online panel. Participants independently completed an online, pre-interview survey including both experimental and modified EQ-HWB-9 versions and a cognitive interview conducted online using a semi-structured interview guide. Participants compared experimental and modified wording, response scales, layout, provided item-level interpretations and examples, and discussed perceived comprehensiveness of the measure. Interviews were conducted until thematic saturation was achieved. Verbatim transcripts were qualitatively coded and analyzed using the framework method. RESULTS: Thirty-four participants (mean age 55; 71% female) completed interviews. Most items demonstrated strong face and content validity; participants readily interpreted daily activities, exhaustion, loneliness, anxiety, sadness/depression, and pain as intended and provided rich, relevant examples. However, the mobility item was identified by several participants as applying only to users of mobility devices. Across modifications, participants preferred "difficulty" over "trouble" (cognition), "lack of control" over "no control," "a little of the time" over "only occasionally," and "moderate difficulty" over "some difficulty." Most participants found repeated question stems clearer than shared item stems. Half of respondents perceived the EQ-HWB-9 as comprehensive, with suggested additions (e.g., sleep, self-care) largely aligning with domains included in the long-form EQ-HWB. CONCLUSIONS: Findings provide qualitative support for the content validity of the modified EQ-HWB-9 in US populations and reinforce several proposed wording and response-scale refinements. Select issues identified with the wording of the mobility and control items can inform revisions in the wording of a finalized version of the EQ-HWB.
About
- Frequency
- Sun
- Papers found
- 200
- RSS feed
- Subscribe