Health And Quality Of Life Outcomes[JOURNAL]
Sun
200 papers
Measurement properties of patient-reported outcome measures for sexual health in the general population: a systematic review following the COSMIN 2.0 guidelines.
Shang Y, Yuan Q, Shen Y … +3 more , Xu K, Zhang G, Ju B
Health Qual Life Outcomes · 2026 Apr · PMID 42001095 · Full text
BACKGROUND: Sexual health plays a crucial role in the overall health and quality of life of adults. Currently, various Patient-Reported Outcome Measures (PROMs) exist globally to assess sexual health from different dimen...
BACKGROUND: Sexual health plays a crucial role in the overall health and quality of life of adults. Currently, various Patient-Reported Outcome Measures (PROMs) exist globally to assess sexual health from different dimensions. However, the quality of these measurement tools has not been sufficiently evaluated. AIM: To conduct a systematic review of existing PROMs used to assess sexual health in the general population, evaluate their methodological quality and measurement properties, and provide corresponding recommendations. METHODS: The systematic review was conducted following the previously established research protocol in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Searches were conducted in five databases from database inception until March 14, 2025: PubMed, Embase, Web of Science, Cochrane, and China National Knowledge Infrastructure (CNKI). Two researchers independently identified literature eligible for inclusion based on predefined criteria and qualitatively summarized the characteristics of the Patient-Reported Outcome (PRO) scales. The methodological quality and measurement properties of the identified PROMs were evaluated using the COSMIN standard, and evidence was synthesized using the modified Grading of Recommendations, Assessment, Development and Evaluations (GRADE) method. RESULTS: A total of 27 PROMs for assessing sexual health in the general adult population were ultimately included. Among these, eleven instruments target both sexes, covering sexual function, sexual health, sexual pleasure, sexual violence, sexual addiction, sexual distress, sexual experience, and sexual satisfaction. Eight instruments are designed for men, assessing sexual health, sexual function, sexual satisfaction, sexual arousal, and genital appearance. Another eight instruments focus on women, evaluating sexual health, sexual function, sexual desire, and genital appearance. CONCLUSION: The International Index of Erectile Function (IIEF) and the Female Sexual Function Index (FSFI) demonstrated a relatively more rigorous development process and more comprehensive validation evidence, thus receiving a Grade A recommendation. Furthermore, this review highlights the prevalent insufficiency of evidence regarding the methodological quality and key measurement properties (such as content validity and responsiveness) of tools in this field. There is an urgent need for more high-quality methodological studies to enhance the scientific rigor and applicability of these instrument
Impact of multimorbidity on change in quality of life in a multi-ethnic Asian population: a longitudinal study.
Zahoor F, Johar H, Ryan J … +3 more , Mohan D, Zoungas S, Su TT
Health Qual Life Outcomes · 2026 Apr · PMID 41987239 · Full text
BACKGROUND: The increasing burden of multimorbidity is associated with a risk of poorer health outcomes and mortality; however, evidence on its long-term impact on quality of life (QoL) remains limited. This study aims t...
BACKGROUND: The increasing burden of multimorbidity is associated with a risk of poorer health outcomes and mortality; however, evidence on its long-term impact on quality of life (QoL) remains limited. This study aims to explore the association of multimorbidity and multimorbidity clusters with QoL over a five-year period in a multiethnic, semi-rural cohort across different age groups. METHODS: This study utilized two-wave data from 8280 participants aged 18 years and above, collected as part of health surveys in 2013 and 2018 at the South East Asia Community Observatory (SEACO) Health and Demographic Surveillance System (HDSS) site in Malaysia. Multimorbidity was defined as having two or more of the following eight self-reported chronic conditions: diabetes, hypertension, heart disease, stroke, kidney disease (chronic kidney disease, end-stage renal failure), arthritis, asthma, and obesity. QoL was assessed using the WHOQOL-BREF, a 26-item questionnaire comprising four domains (physical, psychological, social relationships, and environmental health). Multivariable linear regression models were used for both count and clusters of chronic conditions to evaluate the association between multimorbidity and change in QoL over 5 years. RESULTS: At baseline, multimorbidity was significantly associated with better QoL in the social relationships domain only. Multimorbidity at baseline was not significantly associated with the change in QoL over 5 years across any age group. Two clusters of multimorbidity were identified: [1] cardiometabolic and musculoskeletal conditions and [2] cardiorespiratory and renal conditions. Among younger adults (18–34 years), cluster 1 was associated with improvement in the psychological domain (ß: 4.54, SE: 2.25, p-value = 0.03), whereas among adults (35–59 years), cluster 2 was associated with a decline in social relationships (ß: -6.57, SE: 2.87, p-value = 0.01). CONCLUSIONS: The study findings highlight that clinicians and policymakers need to focus on developing age-tailored interventions. Moreover, a simple count of chronic conditions fails to fully capture whether a certain group of conditions is resulting in a decline in QoL. Therefore, a cluster-based approach could provide a more useful insight.
Patient- and provider-level determinants of self-assessed health and well-being among adults with chronic conditions in Slovenian primary care.
Guček NK, Stepanović A, Gorenjec NR … +1 more , Klemenc-Ketiš Z
Health Qual Life Outcomes · 2026 Apr · PMID 41987168 · Full text
BACKGROUND: Chronic diseases significantly impact patients’ quality of life and healthcare systems. In Slovenia, understanding the factors influencing self-assessed health and well-being can support more effective primar...
BACKGROUND: Chronic diseases significantly impact patients’ quality of life and healthcare systems. In Slovenia, understanding the factors influencing self-assessed health and well-being can support more effective primary care policies. The purpose of this study was to identify patient- and provider-level factors associated with general health and well-being among Slovenian adults with chronic conditions. METHODS: This cross-sectional study was conducted as part of the OECD-led PaRIS initiative. Data were collected from 2133 patients aged ≥ 45 years with at least one chronic condition and 70 primary care providers. Well-being was measured via the WHO-5 Well-Being Index; general health was self-rated. Mixed-effects models were used to assess associations between well-being (linear mixed model for a continuous outcome) and general health (logistic mixed-effects model for a binary outcome) and sociodemographic, behavioural, and provider-level variables. RESULTS: General health was rated as excellent, very good, or good by 62.5% of the patients. The mean well-being score was 60.9 (SD = 20.9). The key patient-level predictors of better health and well-being were higher income (medium vs. low OR = 1.64, 95% CI [1.26, 2.15]; high vs. low OR = 2.28, 95% CI [1.62, 3.21]), regular physical activity (OR = 1.98, 95% CI [1.57, 2.50]), age and BMI. The last two were nonlinearly associated with optimal well-being near a BMI of 25 and peaking at approximately 65–69 years of age. Male sex was associated only with greater well-being, whereas employment (OR = 2.41, 95% CI [1.67, 3.50]) and higher education (OR = 1.52, 95% CI [1.17, 1.97]) were only associated with better health. Among the provider-level factors, only the public health care setting was positively associated with well-being. Surprisingly, receiving written self-management instructions more often was linked to slightly lower well-being. Observed differences in wellbeing reached clinical relevance (10 points) for age, BMI, and regular physical activity (b = 10.46, 95% CI [8.48, 12.43]). CONCLUSIONS: Patient-level factors were strongly associated with self-assessed health and well-being among patients with chronic conditions, whereas provider-level organisational features showed limited associations. Care in public health care settings was associated with higher well-being. These findings support the need for age- and BMI-sensitive interventions, behaviour-focused care, and socially equitable policies in chronic disease management.
Depression and psychiatric help-seeking as joint outcomes: a Bayesian multilevel analysis of household-level dependence.
Camadan F, Yıldız MS, Şahin HB … +3 more , Urak F, Börekçi TB, Bilgiç A
Health Qual Life Outcomes · 2026 Apr · PMID 41981620 · Full text
BACKGROUND: Depression and the utilization of psychiatric services (PSU) are complex mental health outcomes shaped by a wide range of individual, familial, and socioeconomic factors. However, within the context of Türkiy...
BACKGROUND: Depression and the utilization of psychiatric services (PSU) are complex mental health outcomes shaped by a wide range of individual, familial, and socioeconomic factors. However, within the context of Türkiye, limited attention has been devoted to the simultaneous modeling of these outcomes and to the systematic examination of their shared household-level determinants. METHODS: This study conducts a concurrent analysis of two binary outcomes—self-reported depression and receipt of professional psychiatric care within the past 12 months—using data from a nationally representative household survey. The analytical sample comprises 22,742 individuals nested within 10,028 households across Türkiye. A Bayesian multilevel bivariate logistic regression model was employed to account explicitly for the hierarchical structure of the data, with individuals nested within households. Household-level random intercepts were specified for both outcomes, and the correlation between the latent processes underlying depression and PSU was directly estimated. Weakly informative priors were adopted, and model estimation was performed using the No-U-Turn Sampler (NUTS), an efficient variant of the Hamiltonian Monte Carlo algorithm. RESULTS: The results reveal pronounced clustering of both depression and PSU at the household level. A strong positive correlation between household-level random effects indicates that individuals experiencing depression are substantially more likely to utilize psychiatric services within the same family context. At the individual level, men are significantly less likely than women to report depressive symptoms or to seek psychiatric care. Tobacco and alcohol use are positively associated with depression risk, whereas adequate rest and healthier lifestyle behaviors exhibit protective effects. Increases in body mass index (BMI) are associated with a higher likelihood of depression. In contrast, active employment and higher household income are linked to reduced depression risk. Additionally, a range of sociodemographic and economic characteristics exert significant effects on both depression and PSU. CONCLUSIONS: These findings demonstrate that depression and psychiatric service utilization (PSU) are shaped not only by individual-level characteristics but also by shared familial and structural factors. The results underscore the need for mental health policies that move beyond narrowly individual-centered frameworks and instead adopt holistic strategies that incorporate household dynamics and broader socioeconomic conditions.
Development and validation of the Health Belief Scale for Sarcopenia Prevention and Management (HBSPM): a pilot study among older adults in Guangdong, China.
Fang J, Liang H, Zhong J … +8 more , Jiang Z, Lu S, Liu Z, Chen R, Liao R, Zou T, Su Q, Wei L
Health Qual Life Outcomes · 2026 Apr · PMID 41981583 · Full text
BACKGROUND AND OBJECTIVES: The prevalence of sarcopenia among older adults is rising annually, highlighting the importance of enhancing awareness and self-management in sarcopenia prevention as a critical public health p...
BACKGROUND AND OBJECTIVES: The prevalence of sarcopenia among older adults is rising annually, highlighting the importance of enhancing awareness and self-management in sarcopenia prevention as a critical public health priority. This study aimed to develop and validate the Health Belief Scale for Sarcopenia Prevention and Management (HBSPM) in older adults and to assess its reliability and validity. METHODS: This study was conducted in two phases. Guided by the Health Belief Model (HBM), the HBSPM was developed through a comprehensive literature review, expert consultation, and cognitive interviews. In May 2024, 701 older adults were recruited through stratified convenience sampling across from cities classified into three tiers according to their 2023 GDP levels in Guangdong Province. The validity of the HBSPM was assessed using item analysis, exploratory factor analysis (EFA), and confirmatory factor analysis (CFA). RESULTS: The scale consists of 30 items across six dimensions: Susceptibility (5 items), Seriousness (6 items), Benefits (4 items), Barriers (5 items), Cues for Action (5 items), and Self-Efficacy (5 items). EFA revealed that these six factors accounted for 60.42% of the total variance. Factor loadings for the 30 items ranged from 0.615 to 0.759. The scale demonstrated good validity (χ²/df = 1.466, RMSEA = 0.045, TLI = 0.965, IFI = 0.961, NFI = 0.897, CFI = 0.965, GFI = 0.852, I-CVI > 0.86, S-CVI = 0.989) and reliability (Cronbach’s alpha = 0.935). CONCLUSION: This study demonstrates that the HBSPM is an effective tool for measuring health belief regarding sarcopenia prevention and management among older adults and provides a robust foundation for targeted health education and behavioral interventions.
Quality of life in patients with pulmonary arterial hypertension: A systematic review and meta-analysis.
Carmona-Segovia AD, Morales-Asencio JM, Escribano-Subías P … +3 more , Rodríguez-Capitán J, Jiménez-Navarro M, Becerra-Muñoz VM
Health Qual Life Outcomes · 2026 Apr · PMID 41975523 · Full text
BACKGROUND: Pulmonary arterial hypertension (PAH) is a rare incurable disease characterized by pulmonary artery remodeling, which may eventually lead to right ventricular failure and death. Despite advancements in target...
BACKGROUND: Pulmonary arterial hypertension (PAH) is a rare incurable disease characterized by pulmonary artery remodeling, which may eventually lead to right ventricular failure and death. Despite advancements in targeted therapies, PAH remains life-threatening with significant impact on patients’ quality of life (QoL). The importance of patient-reported outcome measures (PROMs) in assessing health-related QoL has been increasingly recognized, but their implementation remains inconsistent in clinical practice. This systematic review aims to assess and synthesize the available evidence on the impact of PAH on patients’ QoL measured by PROMs. METHODS: A systematic review was conducted following PRISMA guidelines. Studies were identified through searches in CINAHL, EMBASE, Web of Science, PubMed, Scopus, and BVS. Inclusion criteria encompassed observational studies and RCTs with non-pharmacological interventions assessing QoL in PAH patients. RCTs involving drugs were excluded. Risk of bias was assessed using the Joanna Briggs Institute (JBI) appraisal tools. A meta-analysis was performed using a random-effects model. RESULTS: A total of 3271 studies were retrieved; 44 met inclusion criteria. PROMs like SF-36 (14 studies), SF-12 (2), CAMPHOR (9), EQ-5D (7), and EmPHasis-10 (13) were utilized. Findings highlight a dichotomy in QoL outcomes, with significant physical impairments but relatively preserved mental health scores. Subgroup analyses revealed substantial heterogeneity, emphasizing the need for standardized tools. CONCLUSIONS: This review underscores the critical role of PROMs in understanding QoL in PAH patients. Findings advocate for integrating PROMs into clinical assessments and standardizing methodologies. REGISTRATION: The protocol was registered in PROSPERO (CRD42022292145).
Approaches used to model patient and carer health-related quality of life in economic models of rare disease treatments in NICE appraisals.
Wiedmann L, Cairns J
Health Qual Life Outcomes · 2026 Apr · PMID 41975520 · Full text
INTRODUCTION: Providing robust health-related quality of life (HRQoL) evidence for rare disease treatments (RDTs) is difficult due to the challenges involved in generating and interpreting evidence for rare diseases. Our...
INTRODUCTION: Providing robust health-related quality of life (HRQoL) evidence for rare disease treatments (RDTs) is difficult due to the challenges involved in generating and interpreting evidence for rare diseases. Our objective was to systematically review the approaches used to model patient and carer HRQoL in economic models in RDT appraisals published by the National Institute for Health and Care Excellence (NICE). METHODS: We identified appraisals completed between 2011 and 2023 and recorded HRQoL modelling characteristics from appraisal documents, including the approach used to derive the patient health state utility values (HSUVs) used in the final appraisal, and whether and how carer HRQoL was included. We mapped the approaches to estimating patient and carer HRQoL against NICE’s hierarchy of preferred HRQoL methods. RESULTS: We identified a total of 111 indications. Overall, we found heterogeneity in the approaches used to model patient and carer HRQoL. Regarding patient HRQoL, EQ-5D data was not available from a relevant study in 59.5% of indications in the final appraisal, and EQ-5D was not deemed appropriate by the committee in 6.3% of indications. EQ-5D from a relevant study was available and used in 34.2% of indications. Various sources of patient utilities were used, including EQ-5D values from a relevant study, estimates from the published literature (EQ-5D or non-EQ-5D), values derived from statistical mapping, vignette studies, or proxy conditions, combinations of several types, or values based on assumptions. Approaches to modelling patient utilities were also discussed in three-quarters of final appraisal documents, suggesting a considerable influence on the final recommendation. The impact on carer HRQoL was included quantitatively in the final appraisal in 26.1% of indications; for 3.6% of indications, the committee considered it qualitatively; and for one indication (0.9%) both quantitatively and qualitatively. CONCLUSION: Our findings suggest that, given the NICE hierarchy, patient and carer HRQoL was not very well captured in RDT appraisals. If the NICE hierarchy is viewed as a taxonomy of possible approaches, our findings also suggest that it does not accommodate some of the approaches used to estimate HRQoL in RDT appraisals. These issues raise questions about the consistency with which HRQoL is modelled and reflect the challenges of generating robust HRQoL evidence for RDTs.
Discrepancies in the country versions of the WHOQOL-BREF as a potential source of error in assessing quality of life and a barrier to comparative research.
Maksymowicz S, Libura M, Jarynowski A … +1 more , Paradowski MB
Health Qual Life Outcomes · 2026 Apr · PMID 41965716 · Full text
BACKGROUND: The aim of this study was to determine whether different language versions of the WHOQOL-BREF questionnaire allow for obtaining comparable health-related quality of life measurement results across different c...
BACKGROUND: The aim of this study was to determine whether different language versions of the WHOQOL-BREF questionnaire allow for obtaining comparable health-related quality of life measurement results across different countries. METHODS: We analysed 21 country versions published on the World Health Organization website. Each version was compared to the reference English questionnaire in terms of its translation, the timeframe of measurement, the inclusion of instructions for respondents, visual layout, and additional elements. To evaluate the accuracy of the questions and scales, selected versions were reviewed by native speakers, and all translations were subsequently reviewed using a large language model. RESULTS: The results reveal substantial discrepancies between the versions across all evaluated criteria. In some cases, translation errors were so severe that responses to certain questions could not be meaningfully compared. CONCLUSIONS: We conclude that the WHOQOL-BREF questionnaire translations should undergo a comprehensive review to ensure conceptual and structural consistency and comparability. Additionally, language versions developed by external institutions should be carefully vetted by the WHO. The common practice of adding a note that a certain version is not an official WHO translation proves insufficient, as these tools are routinely treated by researchers and clinicians as de facto official instruments.
Translation, cultural adaptation, and psychometric validation of the Persian caregiver empowerment scale for stroke survivors for use in Iran.
Pourhasan K, Fasih M, Vasli P
Health Qual Life Outcomes · 2026 Apr · PMID 41965697 · Full text
BACKGROUND: Empowering family caregivers (FCGs) of stroke survivors can improve the quality of care they provide and reduce their stress levels. This study focused on translating, culturally adapting and testing the Pers...
BACKGROUND: Empowering family caregivers (FCGs) of stroke survivors can improve the quality of care they provide and reduce their stress levels. This study focused on translating, culturally adapting and testing the Persian version of Caregiver Empowerment Scale (CES) for FCGs of stroke survivors. METHODS: This methodological investigation was conducted in two large hospitals in Tehran, Iran, during the 2024–25 academic year. It comprised the following five steps: First, the CES was translated. Secondly, face validity was evaluated with 20 FCGs. Third, content validity was examined with ten experts. Fourthly, construct validity was assessed via exploratory factor analysis (EFA) and confirmatory factor analysis (CFA) with 150 and 165 FCGs, respectively. Data analysis was performed using SPSS 26 and the lavaan package in R at a significance level of 0.05. RESULTS: After translating the CES into Persian, face validity confirmed that all items were clear and consistent, and none required removal. However, a quantitative content validity analysis led to the removal of items 28, 29 and 30 due to a low content validity ratio and index. EFA retained 25 items, which had loadings ranging from 0.438 to 0.918. Two items (1 and 19) were removed because their loadings were below 0.43. Four components were extracted — Personal, Social, Adaptive and Informational Self-Efficacy — explaining 80.66% of the total variance. Confirmatory factor analysis (CFA) confirmed the fit of the four-factor model (TLI = 0.903, df = 266, RMSEA = 0.077, SRMR = 0.065, CFI = 0.914). Cronbach’s alpha, McDonald’s omega coefficients and the intraclass correlation coefficient (ICC) were all above 0.90, indicating high reliability. CONCLUSIONS: The findings showed that the Persian version of the 25-item CES for Stroke Survivors is both valid and reliable. This tool allows healthcare providers to evaluate the empowerment of FCGs and identify training requirements for targeted interventions.
Assessing family quality of life in families of people with brain injuries: a Delphi study.
Castillo JL, Aza A, Fernández M … +2 more , Amor AM, Verdugo MÁ
Health Qual Life Outcomes · 2026 Apr · PMID 41965645 · Full text
Acquired brain injury (ABI) has a profound impact on the lives of survivors and their loved ones. However, there is a paucity of research on the quality of life of the whole family. Also, there are no instruments for ass...
Acquired brain injury (ABI) has a profound impact on the lives of survivors and their loved ones. However, there is a paucity of research on the quality of life of the whole family. Also, there are no instruments for assessing family quality of life (FQoL) from a holistic and systemic perspective after ABI in the Spanish context. The goal of this study was to identify a set of indicators and items of FQoL for this population in order to develop a preliminary version of such an assessment tool. A modified Delphi study was conducted with twelve social and healthcare professionals (70% women; age: M = 42.52, SD = 6.39) from ABI rehabilitation services and organizations (four psychologists, three neuropsychologists, three social workers, one nurse and one physiotherapist), who were asked to assess a pool of items throughout three rounds according to two criteria (importance and sensitivity). Descriptive analysis and percentage of agreement were employed to select the best items, as well as coefficients of concordance for the final pool of items. As a result, a pool of 71 items for five domains—Individual well-being, Family relationships, Family resources, Community relationships, and Community resources—was obtained. The findings of this study provided content validity evidence for a field test version of a FQoL tool, which may help to inform assessment and family-centered support planning for people with ABI and their families.
Translation, cultural adaptation, and psychometric validation of the Chinese versions of the PROMIS + HF-27 and PROMIS + HF-10 profiles in patients with heart failure.
Li W, Pei Z, Liu W … +12 more , Zhang C, Lin J, Piao M, Kang X, Zhou Y, Guo Y, Zhou X, Gao D, Yang X, Hu Y, Ma H, Yu M
Health Qual Life Outcomes · 2026 Apr · PMID 41963936 · Full text
BACKGROUND: Heart failure (HF) is a prevalent clinical syndrome characterized by dyspnea, fatigue, exercise intolerance, and oedema, significantly impairing patients’ health-related quality of life (HRQoL). The PROMIS + ...
BACKGROUND: Heart failure (HF) is a prevalent clinical syndrome characterized by dyspnea, fatigue, exercise intolerance, and oedema, significantly impairing patients’ health-related quality of life (HRQoL). The PROMIS + HF profile is a targeted instrument designed to evaluate novel interventions, enhance clinical care and shared decision-making, and assess quality of care. However, a linguistically validated Chinese version is currently lacking. This study aimed to translate and culturally adapt the PROMIS + HF into Chinese and evaluate its psychometric properties among Chinese patients with HF. METHODS: Following a standardized cross-cultural adaptation process, the psychometric properties of the Chinese PROMIS + HF profiles (PROMIS + HF-27 and PROMIS + HF-10) were evaluated. A cross-sectional study with a longitudinal component was conducted using convenience sampling to recruit eligible patients from tertiary hospitals in China between September 2022 and February 2023. Participants completed a sociodemographic questionnaire, the PROMIS + HF profiles, the Kansas City Cardiomyopathy Questionnaire (KCCQ), and the Minnesota Living with Heart Failure Questionnaire (MLHFQ). Psychometric evaluation included floor/ceiling effects, construct validity, criterion-related validity, convergent validity, known-groups validity, reliability and responsiveness. RESULTS: A total of 420 patients (mean age 57.68 years) were included. Both profiles exhibited an absence of floor and ceiling effects. Confirmatory Factor Analysis (CFA) supported the construct validity of both profiles, demonstrating acceptable fit indices after modification (PROMIS + HF-27: χ2/df = 3.874, CFI = 0.869, TLI = 0.855, SRMR = 0.055, RMSEA = 0.08; PROMIS + HF-10: χ2/df = 3.408, CFI = 0.958, TLI = 0.940, SRMR = 0.038, RMSEA = 0.073). Criterion-related validity was supported by significant correlations between overall, physical health scores and the 6-Minute Walk Test (6MWT). Convergent validity was demonstrated through strong correlations with KCCQ and MLHFQ scores, and known-groups validity was confirmed by the instruments’ ability to distinguish between New York Heart Association (NYHA) functional classes. Internal consistency was good to excellent for the PROMIS + HF-27 (Cronbach’s α: 0.87–0.95) and acceptable to good for PROMIS + HF-10 (Cronbach’ α/Spearman-Brown: 0.71–0.88). Test-retest reliability was excellent for both instruments (ICC: 0.89–0.97). Responsiveness was demonstrated in the longitudinal subsample, with medium to large effect sizes (Cohen’s d = 0.41–0.66) observed for most domains, except for the psychological and social scores in the PROMIS + HF-10, which showed small change (Cohen’s d = 0.26–0.29). CONCLUSIONS: The Chinese versions of the PROMIS + HF-27 and PROMIS + HF-10 profiles demonstrate satisfactory psychometric properties, supporting their use for the comprehensive evaluation of HRQoL in Chinese HF patients. The PROMIS + HF-27 is recommended for academic research requiring high precision, whereas the PROMIS + HF-10 offers a time-efficient alternative for routine screening in clinical practice. Future research should further evaluate their predictive validity for long-term prognosis.
Association between persistent symptoms and health-related quality of life in the post-COVID-19 condition: a cross-sectional survey in a nationally representative sample of French adults.
Steichen O, Coste J, Delpierre C … +5 more , Robineau O, Gallay A, Makovski TT, Lemogne C, Tebeka S
Health Qual Life Outcomes · 2026 Apr · PMID 41943096 · Full text
BACKGROUND: Up to 30% of individuals infected with COVID-19 experience persistent symptoms, known as post-COVID-19 condition (PCC), which can impair health-related quality of life (HRQoL). While post-COVID-19 condition (...
BACKGROUND: Up to 30% of individuals infected with COVID-19 experience persistent symptoms, known as post-COVID-19 condition (PCC), which can impair health-related quality of life (HRQoL). While post-COVID-19 condition (PCC) is known to affect health-related quality of life (HRQoL), the specific contribution of individual symptoms remains underexplored. This study examined how specific symptoms affect HRQoL in individuals with PCC compared to those who had COVID-19 without PCC and those never infected. METHODS: A cross-sectional survey was conducted among a nationally representative sample of 1,813 French adults through telephone and online interviews. Participants were grouped according to WHO PCC criteria, based on infection status and 31 persistent symptoms. HRQoL was measured using the Patient-Reported Outcomes Measurement Information System (PROMIS-29), and impairment was defined as having at least two affected domains. Logistic regressions adjusted for confounders were used to assess associations. RESULTS: Among 1,813 participants (365 with PCC, 1,270 previously infected without PCC, 178 never infected), impaired HRQoL was significantly more frequent in with PCC (36%) than in those previously infected without PCC or never infected (adjusted odds ratio: 2.02; 95% CI 1.19-3.42]). The symptoms most strongly associated with HRQoL impairment in PCC were anxiety (OR 3.75; 95% CI: 1.80-7.80), joint pain (OR 2.31; 95% CI: 1.15-4.65), and sleep disturbances (OR 2.14; 95% CI 1.08-4.25), whereas fatigue, shortness of breath, and memory issues had a weaker association with impaired HRQoL in PCC than in other groups. CONCLUSION: PCC, and particularly joint pain, anxiety and sleep disturbance, are associated with impaired HRQoL. Targeted interventions for these symptoms may improve well-being in affected individuals.
Health-related quality of life and associated psychosocial and clinical factors among mothers whose neonates admitted to neonatal intensive care units in Amhara Regional State Referral Hospitals, Northwest Ethiopia: a multicenter study.
Abuhay AE, Mengistie BA, Kassie FY … +8 more , Azanaw G, Zeleke TA, Mekonnen CK, Anteneh DE, Amare GN, Mihret SA, Berihun AK, Asaye MM
Health Qual Life Outcomes · 2026 Apr · PMID 41943085 · Full text
BACKGROUND: Mothers’ health-related quality of life (HRQoL) is frequently compromised when their neonates are admitted to neonatal intensive care units (NICUs), leading to psychological distress, sleep disturbances, and...
BACKGROUND: Mothers’ health-related quality of life (HRQoL) is frequently compromised when their neonates are admitted to neonatal intensive care units (NICUs), leading to psychological distress, sleep disturbances, and impaired maternal–infant bonding. These adverse experiences may be further intensified by neonatal clinical complications and maternal psychosocial vulnerabilities. Despite this, empirical evidence on HRQoL and its associated psychosocial and clinical determinants among Ethiopian mothers remains very limited. Therefore, this study aimed to assess mothers’ HRQoL and to identify the associated psychosocial and clinical factors among mothers of neonates admitted to NICUs in referral hospitals of the Amhara Regional State, Northwest Ethiopia. METHODS: A facility-based cross-sectional study was conducted from December 12, 2023, to March 15, 2024 among 636 mothers selected via systematic random sampling in the NICUs of selected referral hospitals. Health-related quality of life (HRQoL) was measured using the validated WHOQOL-BREF instrument, comprising 23 items in four domains. The mean score of each domain and the total HRQoL score (range 0–92) were calculated, with higher scores indicating better quality of life. Data were collected via structured interviews and hospital chart review. Simple and multiple linear regression analyses were conducted to identify psychosocial and clinical factors associated with HRQoL. RESULTS: A total of 651 eligible mothers were approached, of whom 636 participated, yielding a response rate of 97.7%. The overall mean (± SD) score of mothers’ health-related quality of life was 41.87 ± 3.47. The mean scores (± SD) for the physical, psychological, social, and environmental domains were 12.65 ± 2.09, 13.86 ± 1.99, 2.60 ± 1.04, and 13.72 ± 2.02, respectively. Factors significantly associated with mothers’ HRQoL included being married (β = 4.19; 95% CI: 3.02, 5.37), history of antenatal care follow-up at hospitals (β = -1.17; 95% CI: -1.99, -0.36), gestational age ≤ 34 weeks (β = -1.97; 95% CI: -3.21, -0.72), low birth weight (β = -1.15; 95% CI: -3.26, -1.06), receiving information about the neonate’s health status (β = 1.12; 95% CI: 1.03, 2.01), length of NICU stay (β = -0.24; 95% CI: -0.28, -0.04), and poor social support (β = -0.89; 95% CI: -1.40, -0.38). CONCLUSIONS: The findings of this study demonstrate that mothers whose neonates were admitted to the NICU experience reduced health-related quality of life. Therefore, to improve maternal quality of life, a range of effective interventions is needed, including strengthening social support and providing timely information about the health status of their neonates.
Validity and responsiveness of the EQ-5D-5L, EQ-HWB and EQ-HWB-9 to measure health and wellbeing impact of heatwaves among older adults.
Liao M, Rencz F, Yang Z … +2 more , Xiang J, Luo N
Health Qual Life Outcomes · 2026 Apr · PMID 41943046 · Full text
BACKGROUND: The health impact of heatwaves is usually assessed using mortality, morbidity and healthcare service utilization. This study explored the feasibility of using subjective measures to capture and quantify the i...
BACKGROUND: The health impact of heatwaves is usually assessed using mortality, morbidity and healthcare service utilization. This study explored the feasibility of using subjective measures to capture and quantify the impact of heatwaves on the health and wellbeing of older adults. METHODS: A cohort of residents aged ≥ 60 living in Fuzhou city, China, were surveyed four times: before summer in May, during heatwaves in June to July and August, and after summer in October, 2023. At all timepoints, the EQ-5D-5L, experimental EQ-HWB and self-designed questions assessing self-perceived effects of heatwaves were administered through one-on-one, face-to-face interviews. We examined the known-groups validity (using Cohen’s d effect sizes) and responsiveness (using standardized response mean [SRM]) of EQ-5D-5L, EQ-HWB and EQ-HWB-9 (including index values and level sum scores [LSSs]). RESULTS: The responses of 579, 510, 473 and 508 residents were analysed in the four waves of survey, respectively. The ceiling effects for EQ-5D-5L items ranged from 58.2% (pain/discomfort) to 94.3% (self-care), while for EQ-HWB items, it ranged from 32.3% (accepted) to 94.0% (personal care). The EQ-5D-5L and EQ-HWB-9 index values, and EQ-HWB LSSs demonstrated discriminative ability in distinguishing between different groups based on the self-perceived impact of heatwaves, with most of the effect sizes being small (Cohen’s d: 0.04–0.31 for EQ-5D-5L; 0.16–0.34 for EQ-HWB-9; 0.28–0.45 for EQ-HWB). We found negligible responsiveness to improvements in self-perceived effects of heat (SRM: 0.07 to 0.18). Unexpectedly, improved health and wellbeing were observed during the first heatwave compared to pre-heatwave. CONCLUSION: The EQ-5D-5L, EQ-HWB and EQ-HWB-9 demonstrated satisfactory known-groups validity but limited responsiveness in measuring the health and wellbeing impact of heatwaves among Chinese older adults. Future research is recommended to further evaluate these measures as well as other outcomes measures for the purpose of quantifying the health and wellbeing impacts of heatwaves and other climate events.
Health-related quality of life pre-war and during-war in cardiac patients: evidence from a multicenter prospective study - West Bank.
Abu Khadija H, Darwish A, Dabash A … +21 more , Najajra D, Fraitekh YZ, Masu'd M, Zahran A, Maraqah M, Hemieid IK, Yaseen S, Farhoud Z, Daraghmeh G, Elayan L, Ahmad LAM, Khader M, Khader A, Abu Awad A, Othman WSA, Barq A, Darwazah AK, Nairat M, Alkhatib H, Abu Hamdeh N, Alnees M
Health Qual Life Outcomes · 2026 Apr · PMID 41923251 · Full text
BACKGROUND: War imposes systemic and psychosocial stressors that can disrupt postoperative recovery and diminish quality of life. Quantitative data examining these effects in cardiac surgery populations remain scarce. OB...
BACKGROUND: War imposes systemic and psychosocial stressors that can disrupt postoperative recovery and diminish quality of life. Quantitative data examining these effects in cardiac surgery populations remain scarce. OBJECTIVES: To assess whether the wartime period following October 7, 2023, independently affected postoperative health-related quality of life (HRQoL) among patients undergoing coronary artery bypass grafting (CABG) or valve surgery in Palestine. METHODS: In this prospective multicenter cohort, 1,686 patients who underwent cardiac surgery between September 2022 and May 2025 were screened. After exclusion of 486 ineligible or non-followed participants, 1,200 patients were included: 465 operated pre-war and 735 during-war. HRQoL was evaluated using the 12-Item Short-Form Health Survey (SF-12), generating Physical Component Summary (PCS) and Mental Component Summary (MCS) Scores. Associations between wartime exposure and SF-12 outcomes were analyzed using generalized linear models (GLMs) with robust standard errors and validated through propensity score matching (PSM, 1:1 nearest neighbor) matching on age, gender, diabetes, surgery type, cardiopulmonary bypass time, and hospital fixed effects. RESULTS: Open-heart procedures increased by 5% monthly during-war. Postoperative complications were generally more frequent in this period, with notable rises in acute kidney injury (33.8% vs. 22.4%), atrial fibrillation (31.9% vs. 24.8%), and surgical site infection (8.8% vs. 4.1%). Mean PCS and MCS values were significantly lower during-war (p = 0.037 and p = 0.013, respectively). In adjusted GLMs, wartime exposure remained independently associated with reduced HRQoL (β = − 1.31 [95% CI − 3.27 to − 0.65] for PCS; β = − 1.19 [95% CI − 3.12 to − 0.75] for MCS). PSM confirmed these findings (PCS = − 1.47 [95% CI − 2.89 to − 0.06], p = 0.041; MCS = − 1.82 [95% CI − 3.67 to 0.04], p = 0.056). CONCLUSIONS: Wartime conditions were independently associated with clinically relevant reductions in both physical and mental postoperative quality of life. Sustained access to rehabilitation, psychosocial support, and follow-up care is crucial to preserving recovery among cardiac surgery patients in conflict-affected settings. CLINICAL TRIAL NUMBER: Not applicable.
Measuring health-related quality of life in facioscapulohumeral muscular dystrophy: a COSMIN systematic review and conceptual framework.
Carlton J, Powell P, Street J … +4 more , Frances S, Williams C, Sutton A, Hewamadduma C
Health Qual Life Outcomes · 2026 Mar · PMID 41888922 · Full text
BACKGROUND: Facioscapulohumeral muscular dystrophy (FSHD) is a common hereditary myopathy causing progressive muscle weakness. FSHD has substantial impacts on function and health-related quality of life (HRQoL). Patient-...
BACKGROUND: Facioscapulohumeral muscular dystrophy (FSHD) is a common hereditary myopathy causing progressive muscle weakness. FSHD has substantial impacts on function and health-related quality of life (HRQoL). Patient-reported outcome measures (PROs) are used to assess HRQoL, yet their suitability for FSHD remains unclear. OBJECTIVES: (1) identify PROs used to assess HRQoL in adults with FSHD; (2) evaluate the evidence for their measurement properties; and (3) develop a conceptual HRQoL framework for FSHD. METHODS: A systematic review was conducted in accordance with COSMIN and PRISMA-COSMIN guidelines (PROSPERO: CRD42024605345). Two-stage searches across seven databases (including MEDLINE, Embase, and CINAHL, last updated July 2025) identified PROs assessing HRQoL in FSHD and studies evaluating their measurement properties. Eligibility criteria included publicly available, multi-item self-report PROs scored using established systems. Screening, data extraction, and quality appraisal were performed in duplicate. Measurement properties were rated using COSMIN standards and graded with the COSMIN-modified GRADE approach. Item content of the PROs was examined, mapped to an existing framework, and subsequently refined with people living with FSHD to develop a novel HRQoL framework for FSHD (QUAL-FSHD). RESULTS: Fifty-six development papers and 40 research studies were included in the review, 37 studies reported data on psychometric properties. Sixty-six PROs/subscales were included. Most had evidence limited to content validity (i.e., development papers in non-FSHD populations) and construct validity. Only the Upper Extremity Functional Index (UEFI) had data across five measurement properties, though overall evidence quality was very low to moderate. Responsiveness was assessed in nine PROs, with five determined to be ‘sufficient’. The QUAL-FSHD framework comprises seven themes and 44 subthemes. Mapping of the PROs found 21% (n = 14) covered aspects of physical, psychological, and social functioning, with no instrument covering all subthemes. CONCLUSIONS: Current publicly available HRQoL PROs used in FSHD exhibit significant gaps in content coverage and psychometric evidence to support their use in the condition. The QUAL-FSHD framework provides a structured, stakeholder-informed model for evaluating HRQoL in FSHD. There is an urgent need for future research to establish content validity, psychometric performance, and acceptable respondent burden of existing PROs to ensure accurate assessment of HRQoL outcomes in FSHD. TRIAL REGISTRATION: Not applicable.
Latent transitions in quality of life and the influencing factors among patients with first-ever ischemic stroke: a prospective longitudinal study.
Xiu Y, Chen D, Zhang H … +6 more , Liu Z, Xiao C, Lin H, Mai Y, Xu J, Wu Y
Health Qual Life Outcomes · 2026 Mar · PMID 41882756 · Full text
BACKGROUND: Ischemic stroke (IS) is the second leading cause of death and disability globally, with quality of life (QoL) post-stroke influenced by various factors. Conventional static analytical approaches fail to captu...
BACKGROUND: Ischemic stroke (IS) is the second leading cause of death and disability globally, with quality of life (QoL) post-stroke influenced by various factors. Conventional static analytical approaches fail to capture the dynamic transitions between health states over time. This study aimed to characterize the temporal evolution of distinct QoL phenotypes and elucidate the phase-specific mechanisms driving these transitions. METHODS: In this prospective longitudinal study, 442 patients with first-ever IS were assessed for QoL using the Stroke-Specific Quality of Life Scale (SS-QoL) at the acute phase (T0), 1 month (T1), 3 months (T2), and 6 months (T3). Latent Profile Analysis (LPA) was utilized to identify distinct QoL phenotypes, while Latent Transition Analysis (LTA) modeled the probabilities of shifting between latent states. Multi-period Firth’s penalized logistic regression was employed to identify stage-specific determinants of improvement or deterioration across recovery intervals. RESULTS: Three distinct QoL classes (high, moderate, and low) were identified at four time points. The high QoL class exhibited stability but was vulnerable to late declines, while the moderate QoL class showed frequent fluctuations. The low QoL class showed potential for improvement but was at risk for persistent poor outcomes. During the T0-T1 period, improvement was significantly impeded by metabolic and physiological burdens—specifically elevated LDL (β = -0.495, p = 0.013), venous thromboembolism risk (β = -0.990, p = 0.008), and higher Body Roundness Index (β = -0.424, p = 0.001)—but facilitated by left-sided hemiparesis (β = 0.746, p = 0.032). For the transition in the T1-T2 phase, higher LDL levels (β = 0.793, p = 0.047) significantly increased the odds of deterioration, whereas higher total cholesterol (β = -0.620, p = 0.022) reduced it. During the T2-T3 period, resilience (β = -0.054, p = 0.012) and greater functional exercise adherence at 6 months (β = -0.035, p = 0.007) were linked to reduced deterioration. CONCLUSIONS: Transitions between post-stroke QoL states are driven by divergent determinants across recovery phases. The management of IS should follow a continuous, phased approach that prioritizes early control of vascular and metabolic risk factors, sustained engagement in functional rehabilitation over the long term, and systematic integration of psychological support in the later stages, in order to optimize long-term QoL.
Optimizing antibiotic prophylaxis for type III open fractures in China: a cost-effectiveness analysis.
Tian S, Feng L, Sun Z … +5 more , Miao R, Zhang Y, Jiang P, Liu H, Guo Y
Health Qual Life Outcomes · 2026 Mar · PMID 41882655 · Full text
BACKGROUND: Surgical site infections (SSI) remain a significant concern following Type III open fractures. Recent studies have suggested that narrow-spectrum antibiotics like cefazolin (CEZ) may offer comparable efficacy...
BACKGROUND: Surgical site infections (SSI) remain a significant concern following Type III open fractures. Recent studies have suggested that narrow-spectrum antibiotics like cefazolin (CEZ) may offer comparable efficacy to broader-spectrum combinations in preventing SSI, with potential cost benefits. However, the cost-effectiveness of different prophylactic regimens in Type III open fractures in China has not been comprehensively evaluated. METHODS: A decision-tree model was constructed for a hypothetical cohort of 1,000 adult patients with Type III open fractures in the Chinese healthcare setting. Six prophylactic antibiotic regimens were compared: cefazolin (CEZ), cefazolin + aminoglycosides (CEZ + AG), piperacillin/tazobactam (PIPC/TAZ), cefotaxime (CTX), ampicillin/sulbactam (ABPC/SBT) and ceftriaxone (CTRX). Transition probabilities and utility values were derived from published clinical studies, while cost data were obtained from the Chinese Volume-Based Procurement (VBP) policy for drug pricing, along with additional expenses incurred due to SSI. Both one-way deterministic sensitivity analysis (DSA) and probabilistic sensitivity analysis (PSA) were conducted to assess the robustness of the findings against variations in key parameters. RESULTS: From the perspective of the Chinese healthcare system, CEZ was identified as the dominant strategy (lowest cost and highest utility). With a total cost of 1,272.47 CNY and a total utility of 0.3425 QALYs, CEZ yielded the highest net monetary benefit (NMB) of 31,524.54 CNY at a willingness-to-pay (WTP) threshold of 95,749 CNY/QALY (1×GDP per capita). In contrast, all other regimens were found to be dominated (associated with higher costs and lower QALYs), resulting in negative incremental cost-effectiveness ratios (ICERs) relative to CEZ. Among these, CTRX was the least efficient strategy, incurring the highest cost (3,864.94 CNY) while yielding the lowest total utility (0.3262 QALYs). Sensitivity analyses confirmed the robustness of these findings, reinforcing CEZ as the dominant and most cost-effective option. CONCLUSIONS: This study highlights the cost-effectiveness advantage of CEZ in preventing SSI following Type III open fractures in China. CEZ is the most cost-effective option overall, demonstrating a clear advantage over all other regimens. These findings provide essential insights for guiding antibiotic selection and optimizing healthcare resource allocation in the prevention of surgical infections.
Value set of EQ-5D-Y-3L for Hong Kong.
Wong EL, Wang K, Wong AY … +5 more , Cheung AW, Wong CKH, Luo N, Rivero-Arias O, Yeoh EK
Health Qual Life Outcomes · 2026 Mar · PMID 41872908 · Full text
OBJECTIVES: The EQ-5D-Y instrument is currently used to assess health-related quality of life of health states experienced by young populations. However, a country-specific EQ-5D-Y value set for Hong Kong (HK) is not yet...
OBJECTIVES: The EQ-5D-Y instrument is currently used to assess health-related quality of life of health states experienced by young populations. However, a country-specific EQ-5D-Y value set for Hong Kong (HK) is not yet available. The study aimed to develop an HK-specific value set for the EQ-5D-Y, following the valuation proposal recommended by the EuroQol Group. METHODS: The study included a Discrete Choice Experiment (DCE) exercise to estimate the relative importance of each level within the five dimensions of the EQ-5D-Y. A composite Time-Trade Off (C-TTO) was also conducted to anchor the latent scale derived from the DCE to the quality-adjusted life years (QALY) 0–1 scale. Both tasks were administered using the EQ-PVT platform. Responses were collected from adults in the general population, who completed the elicitation tasks from a child’s perspective. RESULTS: A total of 1,001 adult participants responded for the Discrete Choice Experiment (DCE), while 205 adults completed the Composite Time Trade-Off (C-TTO) tasks. The sample was representative of the general Chinese population in HK in terms of age, sex, and geographical distribution. Among the five EQ-5D-Y dimensions, the most influential in determining health state preferences was pain/discomfort, followed by feeling worried, sad, or unhappy; performing usual activities; mobility; and self-care. CONCLUSION: This study presents an EQ-5D-Y-3 L value set for the HK Chinese young population, following the international valuation protocol of this instrument. This value set enables future use of the EQ-5D-Y-3 L for measuring health-related quality of life and conducting economic evaluation for children and adolescents.
Psychometric properties of health-related quality of life assessment instruments in idiopathic pulmonary fibrosis: a systematic review applying COSMIN methodology.
Su K, Feng Z, Wang L … +3 more , Zhao G, Wang J, Li J
Health Qual Life Outcomes · 2026 Mar · PMID 41872861 · Full text
BACKGROUND: Idiopathic pulmonary fibrosis (IPF) is associated with heavy symptom burden, limited treatment options, poor prognosis, and significant economic burden, and severely impairs health-related quality of life (HR...
BACKGROUND: Idiopathic pulmonary fibrosis (IPF) is associated with heavy symptom burden, limited treatment options, poor prognosis, and significant economic burden, and severely impairs health-related quality of life (HRQoL). Optimizing HRQoL has become an important clinical goal in IPF management. Accurately assessing HRQoL is crucial for optimizing clinical practice and providing a key outcome measure data for clinical research. Although multiple HRQoL assessment instruments exist for IPF, the absence of a universally accepted gold standard, combined with insufficient systematic synthesis and standardized evaluation of their psychometric properties, hinders evidence-based instrument selection. This systematic review aims to provide clinicians and researchers with evidence-based guidance for selecting high-quality HRQoL assessment instruments for IPF by comprehensively evaluating existing instruments’ methodological quality and psychometric properties. METHODS: We conducted systematic searching through PubMed, Cochrane Library, Embase, and Web of Science from inception to June 26, 2025, for studies evaluating psychometric properties of HRQoL instruments in IPF. Two reviewers independently took charge of record screening, data extraction and quality assessment using the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) methodology. Recommendations were formulated by integrating assessments with the evidence grading system. The protocol was registered with PROSPERO: CRD420251081250. RESULTS: Twenty-one studies covering fourteen HRQoL assessment scales for IPF were included. These scales comprised five generic instruments (e.g., St George’s Respiratory Questionnaire, EuroQol 5-dimension 5-level) and nine disease-specific tools (e.g., St George’s Respiratory Questionnaire-IPF-specific version (SGRQ-I), King’s Brief Interstitial Lung Disease questionnaire (K-BILD), Living with IPF questionnaire). Among the scales, the SGRQ-I and K-BILD were the most studied, with five studies each, and also had the most assessment dimensions of psychometric properties, covering seven properties each. A majority of scales lacked comprehensive validation of content and cross-cultural validity, and none reported measurement error test results. All fourteen scales were ultimately rated as Grade B recommendation. CONCLUSION: Currently, no HRQoL assessment instruments can be unrestrictedly recommended for use in IPF based on the evaluation of their quality. We recommend that future studies draw on the COSMIN guidelines to refine the validation of psychometric properties for existing instruments, or to develop novel high-quality assessment instruments, facilitating accurate evaluation of HRQoL in IPF.
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