Health And Quality Of Life Outcomes[JOURNAL]
Sun
200 papers
Rethinking measurement of health outcomes in Long COVID: complexities, challenges and considerations.
Bhéreur A, McDuff K, Naye F … +10 more , Lemay L, Grenier AD, O'Hara ME, Nathanson J, Lavoie KL, Sasseville M, Kadakia Z, Décary S, Munblit D, O'Brien KK
Health Qual Life Outcomes · 2026 Jan · PMID 41530768 · Full text
The reality of Long COVID emerged soon after the beginning of the COVID-19 pandemic. More than five years later, thousands of articles have been published with multiple case definitions, heterogenous populations, and num...
The reality of Long COVID emerged soon after the beginning of the COVID-19 pandemic. More than five years later, thousands of articles have been published with multiple case definitions, heterogenous populations, and numerous measurement instruments, yielding a massive amount of evidence. Health outcome measurement is vital for identifying health challenges, changes in health status and predicting future health states for people with Long COVID. Nevertheless, distinct issues of measurement require attention in the context of Long COVID. In this commentary, we discuss complexities, challenges and considerations associated with health outcome measurement in research and clinical practice with people with Long COVID. Specifically, we address: (i) identifying the population in the context of variable terminology, definitions and symptoms affecting people with Long COVID; (ii) identifying the complexity of health constructs, often multidimensional, to measure with numerous health-related consequences associated with Long COVID; (iii) identifying the purpose of measurement while taking into account the dynamic nature of Long COVID and (iv) identifying appropriate outcome measures used with people with Long COVID and their limitations. We highlight important considerations for measurement in research and clinical practice, including the impacts of the various symptoms and the dynamic nature of Long COVID. We provide examples of outcome measures used to date in the context of Long COVID to illustrate the complexities throughout, with a glimpse at wider consequences. We conclude with a brief discussion of considerations to help pave the way forward for the improvement in health outcomes measurement in Long COVID research and clinical practice. Advancing knowledge on Long COVID requires a return to the fundamentals of measurement science. It is critical to appropriately assess the measurement properties of existing instruments for their ability to accurately and reliably measure health-related constructs associated with this condition. Identifying limitations of currently used tools is also essential to prevent perpetuation of issues in the development of condition-specific measurement instruments for Long COVID. This, in turn, will help pave the way for more robust measurement and improved data interpretation in the context of Long COVID.
Development and Rasch calibration of the Breast Cancer Symptom Help-Seeking Capability Scale (BCSHC).
Han Z, Zhu X, Fang Y … +1 more , Ma X
Health Qual Life Outcomes · 2026 Jan · PMID 41519829 · Full text
BACKGROUND: Delays in seeking care after noticing breast cancer-related symptoms are common and may impair outcomes and health-related quality of life. Existing patient-reported measures often emphasize symptom awareness...
BACKGROUND: Delays in seeking care after noticing breast cancer-related symptoms are common and may impair outcomes and health-related quality of life. Existing patient-reported measures often emphasize symptom awareness or general help-seeking attitudes and do not capture capability across the full help-seeking process. This study aimed to develop and preliminarily validate a multidimensional scale of breast cancer symptom help-seeking capability. METHODS: We conducted a cross-sectional instrument development and validation study in a tertiary hospital in Zhejiang, China, and collected data from 1 February 2025 to 30 June 2025. Items were generated under a theory-informed blueprint and reviewed by experts to form a 16-item pilot. We evaluated the scale’s structure and item performance using modern measurement modeling, and examined reliability and construct validity through theory-guided correlations and regression analyses. We assessed symptom help-seeking capability across four domains: Awareness, Knowledge, Action, and Support. RESULTS: N = 198. Five response categories were well used; category probability curves were ordered and step thresholds largely increasing. Two items (B2, D1) showed comparatively weaker performance; their removal produced a 14-item operational form with improved reliability (overall α from 0.943 to 0.948; Knowledge α from 0.769 to 0.795; Support α from 0.780 to 0.818). Domain correlations were strong and directionally consistent: Awareness-Knowledge r = 0.778; Knowledge-Action r = 0.803; Support with Awareness/Knowledge/Action r = 0.777/0.774/0.809 (all p < 0.001). In regressions, Knowledge was positively associated with Awareness and Support (R² = 0.677), and Action with Knowledge and Support (R² = 0.733); model diagnostics did not suggest major violations. CONCLUSION: The BCSHC is a concise, theory-informed instrument for assessing symptom help-seeking capacity among patients with breast cancer, and the recommended form contains 14 items with initial evidence supporting reliability and construct validity. It may help identify stage-specific barriers and inform targeted supportive interventions; further studies should confirm stability and responsiveness in diverse samples.
Sibling psychopathology as a mediator between disability in youth with chronic physical illness and sibling Health-Related quality of life.
Basque D, Yessis J, Leatherdale ST … +1 more , Ferro MA
Health Qual Life Outcomes · 2026 Jan · PMID 41484614 · Full text
BACKGROUND: Chronic physical illnesses (CPIs) can cause significant functional limitations, impacting not only affected youth, but also their siblings. Siblings of youth with chronic physical illness (YwCPI) may experien...
BACKGROUND: Chronic physical illnesses (CPIs) can cause significant functional limitations, impacting not only affected youth, but also their siblings. Siblings of youth with chronic physical illness (YwCPI) may experience higher levels psychopathology and poorer health-related quality of life (HRQL). The aim of this study was to assess the mediating role of sibling psychopathology on the association between YwCPI disability and sibling HRQL. METHOD: Data come from 171 age-matched siblings (mean age: 9.1years, SD = 4.7 years, 44.4% male) of YwCPI (mean age: 9.5 years, SD = 4.2 years, 50.9% male) participating in a longitudinal study. Parents reported on YwCPI disability (WHODAS 2.0), sibling psychopathology (Emotional Behavioural Scales) and sibling HRQL (KIDSCREEN-27) across five time points over 48 months. Linear mixed-effects models were computed to assess mediation, adjusting for sibling age, sex, and time since CPI diagnosis. RESULTS: YwCPI disability predicted increased sibling psychopathology (β = 0.31, p < 0.001), which in turn was associated with lower sibling HRQL. Indirect effects, indicative of mediation, were significant for all HRQL dimensions (β = -0.19 to -0.07, p < 0.05). CONCLUSION: Findings demonstrated that sibling psychopathology mediates the impact of YwCPI disability on sibling HRQL, highlighting the importance of identifying and targeting mental health difficulties to promote sibling well-being. Findings reinforce the need for integrated family-centred care approaches to pediatric health services and suggest that family-based supports may mitigate adverse psychosocial outcomes in siblings of YwCPI.
Translation, cross-cultural adaptation, and psychometric properties of the family impact scale: a COSMIN-based systematic review.
Kunsavate P, Powcharoen W, Nirunsittirat A … +1 more , Manmontri C
Health Qual Life Outcomes · 2025 Dec · PMID 41469695 · Full text
BACKGROUND: The Family Impact Scale (FIS) is a validated caregiver-reported outcome measure that gauges the impact of children’s oral and orofacial conditions on their families. As its use continues to expand across coun...
BACKGROUND: The Family Impact Scale (FIS) is a validated caregiver-reported outcome measure that gauges the impact of children’s oral and orofacial conditions on their families. As its use continues to expand across countries and cultures, the quality of its translated versions and their psychometric properties must be rigorously evaluated. This systematic review sought to assess the translations, cross-cultural adaptations and measurement properties of FIS-14 and FIS-8. METHODS: This review followed PRISMA 2020 guidelines and the COSMIN methodology. PubMed, Scopus, and Embase were searched, with studies being eligible if they translated or adapted the FIS and evaluated at least one psychometric property among caregivers of children aged 6–14 years. Data extraction and quality appraisal were performed independently by two reviewers. Translation and adaptation processes were evaluated using the framework for translation and cultural adaptation process for patient-reported outcomes measures. Psychometric properties and risk of bias were assessed using COSMIN criteria. RESULTS: Fourteen studies met the inclusion criteria, including three studies utilising FIS-8, ten studies utilising the FIS-14 and one study using both versions, covering nine different language adaptations in total. Most studies adhered to core translation and adaptation steps, but key methodological elements, such as reconciliation, cognitive debriefing and proofreading, were frequently inadequately reported. Content validity was frequently rated “doubtful” due to a lack of methodological clarity. The internal consistency of FIS-14 was acceptable (FIS-14: α = 0.79–0.88), but FIS-8 exhibited inconsistent results. Test–retest reliability was generally good (ICC = 0.75–0.96) but often lacked confidence intervals or model specification. Construct validity was supported in most studies. Measurement error and responsiveness were underreported. Structural validity was only assessed in two studies, while cross-cultural and criterion validity were not evaluated in any studies. CONCLUSIONS: FIS-14 demonstrates acceptable reliability and construct validity across a diverse range of settings, supporting its use in assessments of oral health-related quality of life. However, substantial methodological gaps persist when it comes to content validation, responsiveness, structural validity and cross-cultural testing. Future adaptations should follow established guidelines and employ robust statistical methods to ensure comparability and interpretability across different populations.
Health and well-being outcomes from a non-health population-level intervention: the impact of home upgrades in Victoria, Australia.
Page K, Hossain L, Liu D … +4 more , Kenny P, Van Gool K, Viney R, VHHP team, Australia
Health Qual Life Outcomes · 2025 Dec · PMID 41466369 · Full text
BACKGROUND: The Victorian Healthy Homes Program (VHHP) delivered home energy efficiency and warmth upgrades to 1000 low-income households in Victoria, Australia. As Australia’s first randomised control trial (RCT) on the...
BACKGROUND: The Victorian Healthy Homes Program (VHHP) delivered home energy efficiency and warmth upgrades to 1000 low-income households in Victoria, Australia. As Australia’s first randomised control trial (RCT) on the relationship between the home environment and health outcomes in vulnerable older adults, this paper reports the health and wellbeing outcomes focussing three quality of life (QoL) instruments. METHODS: The VHHP used a staggered, parallel-group clustered RCT. All households received a home upgrade either before (intervention group) or after (control group) winter (June-September) in 2018–2020. Three surveys: the SF-36, the EQ-5D-5L, and ASCOT measured self-reported QoL. Ordered logistic regression was conducted for categorical outcomes and Ordinary Least Squares regression for continuous outcomes. Survey outcomes were analysed before and after winter controlling for age, sex, location, and year. RESULTS: The intervention group experienced improved physical functioning, mental health and social care related QoL after winter relative to the control group. The main influential factor (from ASCOT) was the comfort and cleanliness of the accommodation. The intervention group also reported improvements in breathlessness and less time away from usual activities and were less likely to delay seeing a specialist. CONCLUSION: A modest investment in improving housing has important health and wellbeing benefits, especially for more vulnerable individuals. Improved mental health and social care related quality of life made individuals more comfortable in winter and these effects are likely to endure over time because the upgrade is permanent. TRIAL REGISTRATION: Australian and New Zealand Clinical Trials Registry: ACTRN12618000160235. Registration date: 02 February 2018.
EQ-5D-Y-3L population norms for children in Mainland China derived from a national survey 2023-2024.
Chen W, Wu Y, Zhang X … +7 more , Qi J, He J, Xu X, He Y, Yang H, Liu C, Yao Q
Health Qual Life Outcomes · 2025 Dec · PMID 41462467 · Full text
BACKGROUND: The EQ-5D-Y-3L and value sets have been developed in mainland China. However, a nationally representative EQ-5D-Y-3L population norm for children has not yet been established. This study aims to develop EQ-5D...
BACKGROUND: The EQ-5D-Y-3L and value sets have been developed in mainland China. However, a nationally representative EQ-5D-Y-3L population norm for children has not yet been established. This study aims to develop EQ-5D-Y-3L norms for children in mainland China based on a national survey. METHODS: The data for this study were derived from the Medication Literacy Investigation of Chinese Children (MLICC). The survey spanned 18 geographically and socioeconomically diverse provinces/regions in mainland China, employing a multi-stage quota sampling strategy stratified by gender and age. Child participants (8–18 years) completed the survey through an online platform, while guardians provided household information. The survey was supervised by trained investigators through one-on-one, face-to-face interviews, yielding a final sample of 5,191 participants for analysis. The utility index (UI) was reported for the entire sample (weighted using 2020 census data) and by the characteristics of the study participants. RESULTS: The weighted mean UI score was 0.951 (SD = 0.099). The most frequently reported problem was feeling worried, sad or unhappy (WSU) (24.59%), followed by having pain or discomfort (PD) (17.87%), doing usual activities (UA) (7.73%), and mobility (MO) (4.76%), with looking after myself (LAM) being the least reported problem (4.23%). Respondents who were male, younger, and those with better behaviours, no chronic conditions, better family functioning, and residence in a relatively economically developed region had higher UI scores (p < 0.001). CONCLUSIONS: This study provides national EQ-5D-Y-3L population norms for children in mainland China. The study found that children in mainland China have relatively higher UI scores compared with those in other countries. A wide range of socioeconomic and behavioral factors are associated with the UI scores. TRIAL REGISTRATION: Clinical trial number was not applicable.
Patient preferences for pancreatic cancer treatment (PERSEUS): a multicenter discrete choice experiment.
Lansbergen MF, Smith IP, van Alphen EN … +16 more , Augustinus S, Fransen IJM, Wilmink JW, Besselink MG, Molenaar IQ, Homs MYV, de Hingh IHJT, Bonsing BA, Vos-Geelen J, Haberkorn BCM, Vissers PAJ, Nieuwkerk PT, Bijlsma MF, Frederix GWJ, van Laarhoven HWM, Dutch Pancreatic Cancer Group
Health Qual Life Outcomes · 2025 Dec · PMID 41444610 · Full text
BACKGROUND: Pancreatic cancer has an aggressive nature, and treatment severely impacts patients' quality of life. There is limited understanding how patients weigh treatment benefits against side effects, which hampers t...
BACKGROUND: Pancreatic cancer has an aggressive nature, and treatment severely impacts patients' quality of life. There is limited understanding how patients weigh treatment benefits against side effects, which hampers the development of patient-centered care and shared decision-making programs. METHODS: Two discrete-choice surveys were designed: one comprising pancreatic cancer patients with (borderline) resectable disease (early-stage disease), and one including patients with non-resectable or metastatic disease (late-stage disease). Relevant criteria for describing treatments were identified by literature review and validated through patient and expert interviews. Selected criteria were likelihood of adverse events causing hospitalization, impact on daily functioning, gastrointestinal symptoms, life expectancy and frequency of hospital visits. Interim analysis was executed after 109 inclusions, optimizing the choice task combinations. Patients were recruited from a local center and a nationwide questionnaire project. RESULTS: Overall, 428 surveys were sent out and 53% of the participants answered at least one choice task. This included 165 participants with early-stage disease and 62 participants with late-stage disease. Most participants had treatment experience before completing the survey. For both disease stages, participants had a significant preference for the treatment options instead of receiving best supportive care only, although there was significant heterogeneity for this preference among the participants. Life expectancy was the most important treatment characteristic of the pre-selected criteria. CONCLUSIONS: Pancreatic cancer patients, both with early-stage and late-stage disease, choose for anti-cancer treatment over best supportive care and value life expectancy as the most important treatment attribute, although significant differences exist between patients.
Comparison of the measurement properties of the EQ-5D-5L and SF-6Dv2 among patients with diabetes in China.
Li M, Xie S, Li T … +9 more , He W, Li Y, Hui X, Wu Y, Shi F, Wu J, Tian J, Li X, Yang K
Health Qual Life Outcomes · 2025 Dec · PMID 41437075 · Full text
OBJECTIVE: To validate and compare the measurement properties of the EQ-5D-5L and SF-6Dv2 among patients with diabetes in China. METHODS: A quota sampling method was used to recruit a representative sample, social-demogr...
OBJECTIVE: To validate and compare the measurement properties of the EQ-5D-5L and SF-6Dv2 among patients with diabetes in China. METHODS: A quota sampling method was used to recruit a representative sample, social-demographic characteristics, self-reported EQ-5D-5L and SF-6Dv2 responses were collected through online survey. Test-retest reliability and the agreement between EQ-5D-5L and SF-6Dv2 utility values were assessed using the intraclass correlation coefficient (ICC) and the Bland-Altman plot. Hypotheses testing including convergent validity and known-group validity were examined using Spearman's rank correlation and effect sizes, respectively. Sensitivity was compared using relative efficiency and receiver operating characteristic. RESULTS: A total of 600 respondents (53.67% male; mean age 60 years; 90% type 2, 10% type 1 diabetes) were included in this study. A higher ceiling effect was observed for EQ-5D-5L than for SF-6Dv2 (10.5% vs. 0.5%). The mean (SD) utility was 0.771 (0.196) for EQ-5D-5L and 0.671 (0.153) for SF-6Dv2. Agreement between the two instruments was good with an ICC of 0.776. The ICC values for the test-retest analysis were 0.982 for EQ-5D-5L and 0.986 for SF-6Dv2 among the subgroup (N = 100). The Spearman's rank correlation (range: 0.312-0.661) indicated an acceptable convergent validity between the dimensions of EQ-5D-5L and SF-6Dv2. Hypotheses for known-group validity were fulfilled in both instruments. The EQ-5D-5L showed basically equivalent discriminative capacities with the SF-6Dv2 (ES: 0.92-2.08 vs. 1.03-2.05). The SF-6Dv2 had 14.7-445.8% higher efficiency than the EQ-5D-5L at revealing differences in self-reported health status, except for the group dichotomized by "very good, good, fair or bad versus very bad". CONCLUSIONS: EQ-5D-5L and SF-6Dv2 showed generally comparable reliability, validity, and sensitivity in this sample of Chinese patients with diabetes. However, the utility values derived from the two instruments differed, indicating that they may not be used interchangeably. Further research is needed to evaluate and compare their responsiveness.
Evaluating quality of care for dying patients from the perspective of bereaved relatives: validation of the Chinese version of the international care of the dying evaluation.
Zheng X, Zhou L, Li B … +5 more , Dong L, Li Y, Mayland CR, Aoyama M, Miyashita M
Health Qual Life Outcomes · 2025 Dec · PMID 41437061 · Full text
BACKGROUND: Few recognized, valid and reliable tools are used to assess the current quality of care at the very end-of-life from the bereaved relative’s perspective in Mainland China. The purpose of this study was to val...
BACKGROUND: Few recognized, valid and reliable tools are used to assess the current quality of care at the very end-of-life from the bereaved relative’s perspective in Mainland China. The purpose of this study was to validate the Chinese version of the international Care Of the Dying Evaluation (i-CODE) questionnaire by assessing its reliability and validity. METHODS: From June 2023 to January 2024, participants were 216 bereaved relatives who were the primary caregivers of the deceased patients. Confirmatory Factor Analyses (CFA) were conducted, concurrent and discriminant validity was examined by correlating scores from the Chinese version of the i-CODE with Good Death Inventory (GDI), Care Evaluation Scale (CES), and Patient Health Questionnaire (PHQ-9). Internal reliability was assessed with Cronbach alpha (α) and test-retest reliability was assessed using Intraclass Correlation Coefficients (ICC). RESULTS: The Chinese version of the i-CODE had four dimensions and 27 items were confirmed based on confirmatory factor analysis of the factor structure proposed by the authors of the original version. The fit indices were acceptable: Root Mean Square Error of Approximation (RMSEA) was 0.069, Standardised Root Mean Square Residual (SRMR) was 0.063, Comparative Fit Index (CFI) was 0.879, and Tucker-Lewis Index (TLI) was 0.864. The i-CODE was moderately correlated with the GDI (r = 0.50, p < 0.001) and CES (r = 0.31, p < 0.001) and not correlated with PHQ-9 (r = 0.02, p = 0.765). The internal consistency was excellent (Cronbach’s α = 0.91) and the test-retest reliability was good (ICC = 0.73). CONCLUSIONS: The Chinese version of the i-CODE demonstrated acceptable preliminary psychometric properties and broadly supported the original four-factor structure, indicating suitability for assessing the quality of care in the last days of life from the perspective of bereaved relatives in Mainland China. Further validation in larger and more diverse samples is needed, and the scale may be useful for clinical evaluation, quality improvement and cross-cultural research in end-of-life care.
Exploring assessment measures including psychological aspects in adults with acquired Peripheral Facial Palsy (PFP): a scoping review.
Polanco-Fernandez R, Penas P, Iraurgi I
Health Qual Life Outcomes · 2025 Dec · PMID 41430266 · Full text
INTRODUCTION: Given the lack of specific assessment measures and consensus on how to evaluate the psychological aspects of acquired peripheral facial palsy, this study aimed to identify the existing instruments in curren...
INTRODUCTION: Given the lack of specific assessment measures and consensus on how to evaluate the psychological aspects of acquired peripheral facial palsy, this study aimed to identify the existing instruments in current use, as well as the key psychological domains considered. A secondary objective was to identify mental health-related areas not addressed or under-represented by those instruments. METHOD: A scoping review was conducted to identify assessment measures, their underlying dimensions, and frequency of use. Findings were thematically synthesized across specific areas and grouped by consensus among the three authors to identify key domains for evaluating facial palsy. RESULTS: 46 instruments were identified, also capturing social and quality-of-life aspects often closely linked to psychological factors. Their dimensions were classified into five generic areas: health-related quality of life perception, symptomatology (emotional and physical), appearance-related matters, intrapersonal and social skills, and care experience. Analysis of the items led to the identification of specific areas, which were classified by relevance into six broader psychosocial domains: (1) social functioning, (2) emotional symptomatology, (3) facial palsy- related QoL, (4) general health-related QoL, (5) psychological functioning, and (6) care experience-satisfaction. The FDI, FaCE, followed by the SF-36, and HADS emerged as the most used instruments. CONCLUSIONS: The results showed a lack of consensus due to the heterogeneity of the instruments retrieved for the evaluation of psychological outcomes. This review identified under-represented psychological areas, such as social and appearance-related anxiety, body self-perception, and experience of the care process which may warrant further evaluation. Several of the instruments retrieved were general rather than facial palsy-specific, which could not fully address the specific psychological needs of adults suffering with acquired peripheral facial palsy.
Correction: Development of a PROM set for patients with Guillain-Barré syndrome (GBS) and chronic inflammatory demyelinating polyneuropathy (CIDP): study protocol.
Pelouto F, Haagsma JA, Jacobs BC … +1 more , Terwe CB
Health Qual Life Outcomes · 2025 Dec · PMID 41422252 · Full text
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Evening preference with evening-type rest-activity rhythm: a risk for poor quality of life.
Mun S, Kim JK, Baek Y … +2 more , Park K, Lee S
Health Qual Life Outcomes · 2025 Dec · PMID 41413550 · Full text
BACKGROUND: Chronotype reflects an individual’s intrinsic preference for the timing of activity and rest; however, perceived circadian preference may differ from actual behavioral rhythms due to external demands. Both ch...
BACKGROUND: Chronotype reflects an individual’s intrinsic preference for the timing of activity and rest; however, perceived circadian preference may differ from actual behavioral rhythms due to external demands. Both chronotype and rest–activity rhythm have been linked to adverse health outcomes, but their combined association with health-related quality of life (HRQoL) has been less explored. This study investigated how combinations of circadian preference and objectively measured rest–activity timing relate to HRQoL. METHODS: We analyzed data from the Korean Medicine Daejeon Citizen Cohort, including participants who wore a Fitbit for ≥ 7 consecutive days. Chronotype was determined from the Morningness–Eveningness Questionnaire score quintiles, and rest–activity rhythm type from quintiles of the 5-h lowest activity period (L5 start time). Participants in intermediate quintiles were excluded. Four chronotype–rhythm groups were defined: MM (morning preference/morning rhythm), ME (morning preference/evening rhythm), EM (evening preference/morning rhythm), and EE (evening preference/evening rhythm). HRQoL was assessed using the SF-12 Physical Component Summary (PCS) and Mental Component Summary (MCS), the EQ-5D index, and the EQ Visual Analog Scale (VAS). Multiple linear and logistic regression analyses were conducted, adjusting for sociodemographic, lifestyle, and circadian rhythm variables. RESULTS: In total, 458 adults were included in the analysis. Compared with the MM group, the EE group had significantly lower scores for PCS, MCS, EQ-5D index, and EQ VAS (all P < 0.05), which persisted after full adjustment. The EM group had lower MCS but no significant differences in other HRQoL measures. In SF-12 subscales, both EM and EE groups reported lower general health and vitality, while only the EE group had lower role-physical and role-emotional scores. In EQ-5D dimensions, the EE group was more likely to report moderate to extreme pain/discomfort. CONCLUSIONS: Evening preference combined with an evening-type rhythm was associated with consistently poor HRQoL across physical, mental, and health utility domains, independent of confounders including activity levels, circadian robustness, social jetlag, and variability in sleep onset timing. Alignment between preference and rhythm did not confer benefit in the context of eveningness and may be disadvantageous in morning-oriented societies. Future longitudinal studies should examine underlying mechanisms and potential intervention strategies.
Validation of the Chronic Illness Adjustment Scale in Turkish patients with chronic disease.
Turan GB, Özer Z, Çiftçi B
Health Qual Life Outcomes · 2025 Dec · PMID 41408272 · Full text
OBJECTIVE: This study aimed to adapt the Chronic Illness Adjustment Scale into Turkish and to evaluate its validity and reliability in assessing how individuals with chronic illnesses adjust to their condition. METHODS:...
OBJECTIVE: This study aimed to adapt the Chronic Illness Adjustment Scale into Turkish and to evaluate its validity and reliability in assessing how individuals with chronic illnesses adjust to their condition. METHODS: This methodological study was conducted between July 2024 and July 2025, involving 518 chronic patients who visited the internal medicine outpatient clinic of a university hospital. Data were collected using the Personal Information Form and the Chronic Illness Adjustment Scale (CIAS). RESULTS: According to confirmatory factor analysis, the factor loadings of the scale ranged from 0.300 to 0.850, and a five-dimensional structure was confirmed. The scale’s fit indices were x² = 495.17, df = 140 (p < 0.05), x²/df = 3.53, RMSEA = 0.070, CFI = 0.94, SRMR = 0.057, TLI = 0.92, RMR = 0.044, and AIC = 652.03”. The overall Cronbach’s α coefficient of the scale was 0.80, and for the sub-dimensions, it ranged between 0.67 and 0.80. The validity and reliability of CIAS were proven without any changes to its original form. CONCLUSION: This study determined that the adapted CIAS consists of five subscales and 19 items, is compatible with Turkish culture, and is a valid and reliable scale.
Rasch analysis of the self-reported PedsQL™ 4.0 Generic Core Scales by Australian children.
Kwon J, Raghunandan R, Nghiem SH … +6 more , Howard K, Lancsar E, Huynh E, Howell M, Petrou S, Smith S
Health Qual Life Outcomes · 2025 Dec · PMID 41398296 · Full text
PURPOSE: The Pediatric Quality of Life Inventory™ Version 4.0 Generic Core Scales (PedsQL GCS), comprising 23 items covering four subscales (physical, emotional, social, and school functioning), is a widely applied gener...
PURPOSE: The Pediatric Quality of Life Inventory™ Version 4.0 Generic Core Scales (PedsQL GCS), comprising 23 items covering four subscales (physical, emotional, social, and school functioning), is a widely applied generic measure of childhood health-related quality of life (HRQoL). This study aimed to assess the psychometric performance of the self-reported Child version in an Australian general population of children using psychometric criteria based on Rasch measurement theory. METHODS: To minimise type I error, a random sample of n = 500 was drawn from 1,874 Australian children aged 11–12 years who participated in the Longitudinal Study of Australian Children and completed the PedsQL GCS Child self-report measure. The partial credit model was applied. The following properties were assessed: unidimensionality, model goodness of fit, model reliability, targeting, item fit, threshold ordering, differential item functioning (DIF), and local dependency. RESULTS: Areas of poor performance included: weak support for unidimensionality of school functioning subscale; only emotional functioning subscale showing sufficient model goodness of fit; poor targeting, suggesting that item thresholds are limited in discriminating HRQoL differences in this cohort; seven items showing disordered thresholds; and five pairs of items being locally dependent. Only two items showed poor fit, and there was no evidence of non-uniform DIF regarding sex and age. CONCLUSION: Not all Rasch measurement criteria were satisfied by the PedsQL GCS Child self-report measure applied in Australian children. This Rasch-based psychometric evaluation identified potential areas of improvement that can complement the known conceptual, practical, and classical psychometric strengths of the PedsQL GCS.
Oral health-related quality of life and its determinants among the Saudi adult population: a cross-sectional analytical study.
Iqbal A, Chaudhary FA, Almaeen SH … +6 more , Alnasser M, Baig N, Siddiqui YD, Khattak O, Mustafa M, Karobari MI
Health Qual Life Outcomes · 2025 Dec · PMID 41390418 · Full text
BACKGROUND: Oral Health-Related Quality of Life (OHRQoL) reflects the subjective impact of oral health on individuals’ social, psychological, and functional well-being. While oral health challenges in Saudi Arabia persis...
BACKGROUND: Oral Health-Related Quality of Life (OHRQoL) reflects the subjective impact of oral health on individuals’ social, psychological, and functional well-being. While oral health challenges in Saudi Arabia persist despite advancements in healthcare, there is a scarcity of research examining OHRQoL across various demographic groups. This study aimed to evaluate the OHRQoL of adults in Saudi Arabia using the Oral Health Impact Profile (OHIP-14) and examine its association with sociodemographic factors and self-perceived oral health behaviors. METHODS: A cross-sectional study was conducted among 1054 participants from all regions of Saudi Arabia, recruited through stratified sampling. Data were collected using a structured, validated Arabic version of the OHIP-14 questionnaire and analyzed using descriptive statistics, chi-square tests, t-tests, ANOVA, and multiple logistic regression. RESULTS: The mean OHIP-14 score was 12.6 (SD: 11.7), with 89.5% of participants reporting at least one problem affecting OHRQoL. Higher OHIP-14 scores, indicating poorer OHRQoL, were significantly associated with being male, aged 40–49 years, residing in the southern region, being married, working full-time, having a higher monthly income, smoking, and reporting poor general and oral health. Behavioral factors, such as irregular dental checkups, infrequent tooth brushing, and bad breath, also contributed significantly to worse OHRQoL. Regression analysis identified age, place of residence, dental checkups, and bad breath as significant predictors of problems and frequent problems on the OHIP-14 scale. CONCLUSION: This study highlights significant variations in OHRQoL among the Saudi population, driven by sociodemographic factors, oral health behaviors, and self-perceived oral health. The findings emphasize the importance of tailored public health interventions focusing on oral hygiene awareness, regular dental checkups, and access to care, particularly in underserved regions.
The Recovering Quality of Life - Utility Index (ReQoL-UI): the Hong Kong valuation study.
Xu RH, Yang C, Thai T … +3 more , Wong EL, Ng SSM, Norman R
Health Qual Life Outcomes · 2025 Dec · PMID 41387865 · Full text
OBJECTIVE: This study aims to establish a Hong Kong (HK)-specific value set for the ReQoL-UI, an instrument designed to evaluate health-related quality of life with a focus on mental health, using the discrete choice exp...
OBJECTIVE: This study aims to establish a Hong Kong (HK)-specific value set for the ReQoL-UI, an instrument designed to evaluate health-related quality of life with a focus on mental health, using the discrete choice experiment-time trade-off approach to facilitate cost-utility analyses of mental health interventions. METHOD: A web-based survey was conducted from April to August 2024, recruiting 1,008 HK residents aged 20–69 years. Quota sampling was used to ensure age and sex representativeness based on 2021 HK census data. The ReQoL-UI’s seven dimensions with a duration item were evaluated across 180 choice sets divided into 15 blocks, with participants completing 12 tasks each. Utility weights were estimated using a conditional logit and mixed logit models, anchored to a 1 (full health) to 0 (dead) scale, and refined for consistency and statistical fit. Preference heterogeneity was tested using a latent class model. RESULTS: The HK value set yielded a utility score of -0.870 for the worst health state (i.e., all dimensions at level 5), with physical health dimension contributing the largest decrement (-0.675), followed by dimensions well-being (-0.234) and activity (-0.218). The coefficient for the second level of the “activity” and “well-being” dimensions showed no statistically different from the reference level. For the dimensions of “choice, control, and autonomy” and “hope,” the coefficients for the second and third levels were identical. Sensitivity and preference heterogeneity analyses confirmed the overall stability of the value set. CONCLUSION: This study presents the first Asian value set for the ReQoL-UI, enabling quality-adjusted life years calculations to support cost-utility analyses of mental health programs and interventions in HK.
Exploring valuation of a modified EQ-5D-Y-3L adapted for 2-4 year olds: a think-aloud study.
van Heusden A, Jones R, Yu A … +3 more , Mulhern B, Dalziel K, Devlin N
Health Qual Life Outcomes · 2025 Dec · PMID 41353148 · Full text
AIM: This study aimed to establish the feasibility of using discrete choice experiments (DCE) to value health states described by the modified EQ-5D-Y-3L adapted for 2-4-year-olds, and to explore participants’ views on r...
AIM: This study aimed to establish the feasibility of using discrete choice experiments (DCE) to value health states described by the modified EQ-5D-Y-3L adapted for 2-4-year-olds, and to explore participants’ views on relevant preferences, valuation perspective, age framing, and spillover effects, and how all of these are impacted by parental status. METHODS: Online interviews were conducted with Australian adults, comprising six think-aloud DCE (imagining a hypothetical 3-year-old) and open-ended questions to explore the key aims. Interview transcripts were double-coded using an inductive and deductive approach and analysed using framework analysis. RESULTS: A total of 17 participants took part (parents/caregivers, n = 9; non-parents, n = 8). Participants emphasised the inclusion of preferences from parents/caregivers or professionals who interact with children. Participants tended to instinctively think of their own child or a child they know. Both caregiver and future spillover effects were observed, and participants included information beyond the description of the task when providing valuations. Participants reported a high level of ease and understanding in completing the DCE tasks. CONCLUSIONS: DCE appears to be feasible for obtaining stated preferences regarding dimension importance for the modified EQ-5D-Y-3L adapted for 2-4-year-olds. Participants expressed views that preferences for these health states should be elicited from adults with experience of young children. It is important for future valuation studies to examine the types of spillover effects and other factors influencing participants’ assessments of health states for young children.
Non-motor symptoms as critical predictors of quality of life in Parkinson's disease: a machine learning approach.
Magano D, Barros AS, Massano J … +2 more , Alsuwaidi L, Taveira-Gomes T
Health Qual Life Outcomes · 2025 Dec · PMID 41353139 · Full text
BACKGROUND: Parkinson's disease (PD) considerably impacts health-related quality of life (HRQoL) through motor and non-motor symptoms. The Parkinson's Disease Questionnaire-39 (PDQ-39) is the most widely used tool to ass...
BACKGROUND: Parkinson's disease (PD) considerably impacts health-related quality of life (HRQoL) through motor and non-motor symptoms. The Parkinson's Disease Questionnaire-39 (PDQ-39) is the most widely used tool to assess HRQoL, encompassing eight dimensions and a Summary Index providing an overall score. Despite advances in machine learning (ML) for predicting disease symptoms and progression, its application to predict HRQoL across these dimensions remains underexplored. METHODS: This study uses complete-case data for 478 of 861 patients from PRISM, a cross-sectional observational survey conducted in six European countries in 2018-2019. Participants were adults with PD recruited through advocacy groups and clinical centers who completed online assessments, providing data on demographics, medication, comorbidities, and disease characteristics (Tolosa et al., 2021). ML models were trained to predict PDQ-39 dimensions and Summary Index scores (0-100; higher = worse HRQoL). Features were preselected using the Boruta algorithm on the training data. Model selection was based on the lowest mean RMSE from 100 bootstrap resamples on the training set. Selected models were then retrained using 1000 bootstrap resamples for robust performance estimation. Final performance was evaluated on a held-out 20% validation set using R², MAE, and RMSE. Feature importance was assessed using permutation importance with MAE loss (100 permutations) on the held-out validation set. Factor Analysis of Mixed Data (FAMD) was used to explore patterns between non-motor symptoms and PDQ-39. RESULTS: Selected models: xgbTree (Summary Index; Activities of Daily Living) and gaussprPoly (all other PDQ-39 dimensions). On the validation set, Summary Index/ Cognitions showed the strongest performance with R² = 0.56/0.53, MAE = 9.60/12.39, RMSE = 12.66/16.20. Permutation feature importance ranked the Non-Motor Symptoms Questionnaire score (sum of 30 non-motor symptoms, range 0-30) as the most important predictor across all models. FAMD showed clustering of Social Support, Bodily Discomfort, and Stigma dimensions with Anxiety. CONCLUSIONS: Our findings demonstrate the critical role of non-motor symptoms in predicting HRQoL in patients with PD. While ML models effectively predict overall HRQoL and cognitive aspects, achieving comparable performance on other dimensions may require additional variables to reduce error. These insights emphasize comprehensive treatment strategies addressing both motor and non-motor symptoms.
Evaluation of measurement properties of the Health Assessment Questionnaire-Disability Index (HAQ-DI) among gout patients in China.
Xu N, Hong T, Luo C … +2 more , Xie S, Wu J
Health Qual Life Outcomes · 2025 Dec · PMID 41331806 · Full text
OBJECTIVES: To evaluate measurement properties of Chinese version of the Health Assessment Questionnaire Disability Index (HAQ-DI) among Chinese gout patients. METHOD: A representative sample of Chinese gout patients wer...
OBJECTIVES: To evaluate measurement properties of Chinese version of the Health Assessment Questionnaire Disability Index (HAQ-DI) among Chinese gout patients. METHOD: A representative sample of Chinese gout patients were recruited with stratification based on age, sex, urban/rural residence, and education level. Ceiling and floor effects were evaluated. Reliability was assessed by internal consistency (Cronbach’s α). Structural validity was verified by confirmatory factor analysis (CFA). Convergent validity was assessed using Spearman’s rank coefficient, examining the correlation between the HAQ-DI and EQ-5D-5L. Known-groups validity was evaluated by determining the HAQ-DI score differences between subgroup patients. Effect sizes were then used to assess sensitivity of the subgroup differences. RESULTS: A total of 1,000 patients were included in the study. Ceiling and floor effects were both not observed. Cronbach’s α was 0.95. The factor loadings of CFA were all above 0.6 and the model fit indices were acceptable (χ2/df = 5.97, RMSEA = 0.071, RFI = 0.906, CFI = 0.940, TLI = 0.920), indicating that the eight-factor model had well structural validity. The HAQ-DI correlated in predictable ways with five EQ-5D-5L dimensions, with Spearman’s rank coefficient ranging from 0.30 to 0.61. The HAQ-DI can discriminate between subgroup patients with different levels of health status, with the mean effect size (0.73) at a medium level. CONCLUSIONS: Chinese version of the HAQ-DI was verified to have satisfactory reliability, validity, and sensitivity in measuring health-related quality of life of Chinese gout patients. We recommend supplementing the responsiveness of the HAQ-DI to changes over time in future research.
Network analysis of multidimensional symptom experience among postoperative esophageal cancer survivors.
Wang Y, Meng Y, Li X … +8 more , Zhang F, Su W, Han R, Peng J, Zhang M, Li S, Wang G, Shang M
Health Qual Life Outcomes · 2025 Dec · PMID 41331460 · Full text
BACKGROUND: Postoperative symptom burden is considerable and markedly undermines the quality of life of esophageal cancer (EC) survivors. This study aimed to examine symptom clusters and the interrelationships among symp...
BACKGROUND: Postoperative symptom burden is considerable and markedly undermines the quality of life of esophageal cancer (EC) survivors. This study aimed to examine symptom clusters and the interrelationships among symptoms in postoperative EC survivors, with the goal of identifying core symptoms. METHODS: A cross-sectional study was conducted using the European Cancer Life Questionnaire and the EC-Specific Supplementary Questionnaire. EC survivors were recruited in Shandong between February 2023 and February 2024. Principal component analysis (PCA) was utilized to identify symptom clusters, while Gaussian graphical network models were used to estimate the network structure. RESULTS: A total of 460 EC survivors were included in the study, revealing three distinct symptom clusters: the reflux-dysphagia cluster, the respiratory-related symptom cluster, and the recovery-fatigue cluster. The final network model demonstrated interconnections among these symptoms. "Fatigue" (FA) exhibited the highest strength centrality, identifying it as the most prominent core symptom in the network. "Emotional functioning" (EF), "Fatigue" (FA), and "cognitive functioning" (CF) ranked highest in terms of bridge strengths. Additionally, the model showed excellent network stability. CONCLUSIONS: EC survivors experienced significant postoperative symptom burden, with symptom network analysis revealing the complex interrelations among postoperative symptoms. This approach also identified core symptoms that play a crucial role in the network. Fatigue emerged as the most influential core symptom, highlighting the significance of targeted interventions to mitigate negative symptom interactions and improve quality of life.
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