Health and Quality of Life Outcomes最新文献

{"title":"A framework for extending the health-related quality adjusted life year by combining instruments.","authors":"Brendan Mulhern, Akanksha Akanksha, Richard Norman, Mina Bahrampour, Peiwen Jiang, Deborah Street, Rosalie Viney","doi":"10.1186/s12955-025-02352-4","DOIUrl":"10.1186/s12955-025-02352-4","url":null,"abstract":"<p><p>Current measurement systems focus mostly on health, and not on multiple constructs of quality of life outcomes (for example health and social outcomes) together. This means we don't capture all that is of value to those receiving treatments, and to society more broadly. Recent research has explored how to extend the quality adjusted life year (QALY) beyond a narrow focus on health-related quality of life (HRQoL) aiming to improve the allocation of scarce health and social care resources. Measures of different constructs, including the EuroQol-Health and Wellbeing (EQ-HWB), and different versions of the Adult Social Care Outcomes Toolkit (ASCOT) and ICEpop CAPability (ICECAP), have been developed. Another approach to extending the health focused QALY is to combine existing descriptive systems with different foci into a single instrument. This has the advantage of using available information and allowing trade-offs between the domains of the descriptive systems to be made explicit. The aim of this paper is to propose a framework to guide this approach and outline the methodological process for generating broader descriptive systems. The first section of the paper explains the framework for combining existing instruments and discusses advantages and disadvantages. Advantages include increasing measurement sensitivity to the wider combined quality of life (QoL) impacts of many interventions and using value sets encompassing preferences that are based on trade-offs across diverse constructs. This enables values informed by impacts on broader QoL with relevance across diverse populations, to be used. Disadvantages include theoretical limitations linked to the constructs of QoL included, and practical difficulties combining instruments. The second section of the paper describes the methodological process for generating combined descriptive systems. This includes how to identify which constructs of QoL could be included, and a description of the mixed methods work required to generate a descriptive system that is psychometrically valid, and appropriate for valuation. Combining constructs of QoL from existing instruments offers a promising way to extend the QALY that differs to developing instruments de novo. Future research can use the framework outlined to develop combined instruments and explore the feasibility and wider applicability of the approach, and the use of the instruments generated in resource allocation decision making.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"23 1","pages":"25"},"PeriodicalIF":3.2,"publicationDate":"2025-03-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11934538/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143700332","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Concept analysis of diabetes-related quality of life.","authors":"Anggi Lukman Wicaksana, Nuzul Sri Hertanti","doi":"10.1186/s12955-025-02354-2","DOIUrl":"10.1186/s12955-025-02354-2","url":null,"abstract":"<p><strong>Background: </strong>Quality of life (QoL) is a common indicator of outcomes in people living with diabetes, but the concept of diabetes-related QoL (DRQoL) remains unclear. Clarifying core knowledge of DRQoL was the goal of this paper.</p><p><strong>Methods: </strong>A concept analysis was conducted according to Walker and Avant's framework. A systematic search of the published literature was conducted between 2002 and 2022 based on resource availability, current relevancy, and the quality of recent studies. Three major databases were used to identify the attributes, antecedents, consequences, and measures for DRQoL. Only articles investigating DRQoL among adult or elderly people living with diabetes that were published in English in peer-reviewed journals were analyzed.</p><p><strong>Results: </strong>In total, 4342 articles were screened, and only 401 articles underwent eligibility assessment. A total of 183 articles were included in the analysis. Most (59.78%) of them were observational studies and DRQoL as a primary outcome. We identified four critical components of DRQoL: (a) general health, (b) diabetes-related satisfaction, (c) diabetes impact, and (d) diabetes self-management. The antecedents were classified according to their contributions to DRQoL as follows: 25 positive-induced, 4 neutral-based, and 19 negative-induced antecedents. The consequences of DRQoL were mortality risk, personal health, satisfaction with health care, hospitalization risk, and failure to return to work. The referents varied widely, and 32 tools were found for DRQoL measurement. Furthermore, 12 scales for disease-specific DRQoL and 17 tools for general QoL were identified.</p><p><strong>Conclusion: </strong>This paper provides a definition of DRQoL as well as its attributes, antecedents, consequences, and measures in adults with diabetes. The attributes of DRQoL included general health, diabetes-related satisfaction, diabetes impact, and diabetes self-management. A comprehensive understanding of DRQoL can improve the quality of care and can aid in the recognition of the needs of care among people living with diabetes.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"23 1","pages":"27"},"PeriodicalIF":3.2,"publicationDate":"2025-03-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11934748/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143700334","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Trajectory of parental health-related quality of life after neonatal hospitalization - a prospective cohort study.","authors":"Julia Karsch, Mascha Schönfeld, Ann-Kathrin Mühler, Susanne Tippmann, Christine Arnold, Michael S Urschitz, Eva Mildenberger, André Kidszun","doi":"10.1186/s12955-025-02345-3","DOIUrl":"10.1186/s12955-025-02345-3","url":null,"abstract":"<p><strong>Background: </strong>Health-related quality of life is an important measure of patient-reported outcomes. There is limited evidence on how parental health-related quality of life develops after neonatal hospitalization.</p><p><strong>Objective: </strong>To evaluate parents' health-related quality of life (HRQL) during the year following their infant's treatment in the neonatal intensive care unit (NICU).</p><p><strong>Methods: </strong>This prospective cohort study, conducted at a German university hospital between 2020 - 2023, examined HRQL among parents of infants hospitalized in the NICU for ≥ 14 days and parents of infants discharged from the maternity ward according to PedsQL™ Family Impact Module. Multiple linear regression analysis was performed to identify associations between cohort affiliation and differences in parental HRQL. Key secondary outcome was parenting sense of competence (PSOC).</p><p><strong>Results: </strong>Participants included 131 parents of NICU infants and 122 unexposed parents. HRQL increased over time for NICU mothers (58.7 at 14 days, 70.8 at 6 months, 77.0 at 12 months after birth) and NICU fathers (69.8 at 14 days, 73.9 at 6 months, 75.7 at 12 months). NICU treatment was significantly associated with lower HRQL at 14 days (mothers: -20.26 points; P < .001; fathers: -9.40 points; P = .04), but not at 6 or 12 months after birth. At 12 months postpartum, NICU mothers showed higher PSOC compared to unexposed mothers (mean difference -4.85; P = 0.005).</p><p><strong>Conclusions: </strong>Parents and especially mothers of NICU infants reported lower HRQL at 14 days postpartum. At 6 and 12 months, their HRQL improved, aligning with that of unexposed parents.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"23 1","pages":"24"},"PeriodicalIF":3.2,"publicationDate":"2025-03-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11909896/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143633927","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Four scales measuring mental wellbeing in the Nordic countries: do they tell the same story?","authors":"Leif Edvard Aarø, Otto Robert Smith, Mogens Trab Damsgaard, Anne-Siri Fismen, Marit Knapstad, Nelli Lyyra, Oddrun Samdal, Einar Baldvin Thorsteinsson, Charli Eriksson","doi":"10.1186/s12955-025-02351-5","DOIUrl":"10.1186/s12955-025-02351-5","url":null,"abstract":"<p><strong>Background: </strong>Mental wellbeing is an important focus in surveys among adolescents. Several relevant instruments are available. In the Nordic part of the Health Behaviour in School-aged Children (HBSC) study 2022, four different scales for the measurement of wellbeing, were employed: Cantril's Ladder, the WHO-5 Wellbeing Index, the seven-item Short Warwick-Edinburgh Mental Wellbeing Scale (SWEMWBS), and the HBSC Health Complaints Scale. This study aims to examine statistically to what extent these scales overlap or measure distinctly different aspects of mental wellbeing.</p><p><strong>Methods: </strong>Data stem from the Nordic part of the HBSC 2022 study (n = 28 189). In all statistical analyses, data are weighted to ensure equal representation of genders, age groups (ages 11, 13, and 15 years), and countries (Denmark, Finland, Iceland, Norway, Sweden). Adjustments were made for cluster effects (school classes). The statistical analyses included factor analysis, general linear modeling, variants of latent variable analysis, and structural equation modeling including bifactor modeling.</p><p><strong>Results: </strong>Exploratory factor analysis produced three factors corresponding well to the three multi-item instruments, with the single item Cantril's ladder loading on the factor defined by the WHO-5 Wellbeing Index. Confirmatory factor analysis produced good fit for a model with one factor consisting of the three positively worded scales and a separate factor for health complaints, but with a high negative correlation between the two factors. Analyses of each of the four scales against gender, age, and 16 other covariates, showed strikingly similar patterns of associations. In an analysis based on a hierarchical model, adjustments for the general mental wellbeing (second-order) factor reduced associations between the first-order factors (one for each scale) and covariates substantially. Latent variable and bifactor modeling confirmed that most of the covariance among all items from all scales combined was captured by one general dimension. Information curve analysis showed that for all scales, the most reliable scores were obtained for participants with below average latent scores.</p><p><strong>Conclusion: </strong>The study indicates that the four scales essentially reflect one underlying dimension. In studies such as HBSC, efforts should be made to use instruments that cover distinctly different aspects of mental health and wellbeing.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"23 1","pages":"23"},"PeriodicalIF":3.2,"publicationDate":"2025-03-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11905447/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143614750","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A standard gamble study to determine health state utilities associated with seizures in glioma in the UK.","authors":"Tomos Robinson, Matthew Breckons, Helen Bulbeck, Michael D Jenkinson, Robin Grant, Luke Vale","doi":"10.1186/s12955-025-02348-0","DOIUrl":"10.1186/s12955-025-02348-0","url":null,"abstract":"<p><strong>Background: </strong>Glioma are infiltrative primary brain tumours, which despite treatment, lead to a substantial reduction in life expectancy. Seizures are a common symptom of glioma, and have a serious impact on patient health related quality of life (HRQoL).</p><p><strong>Objective: </strong>The study aimed to estimate health state utility values for different types of seizures related to glioma, a serious type of brain tumour.</p><p><strong>Methods: </strong>Vignettes for the different health states were initially developed from the existing literature. The health states were then refined in collaboration with patients with previous experience of seizures and clinicians experienced in treating patients with seizures. The final vignettes represented three types of acute seizure: focal aware, focal impaired awareness and tonic clonic and several different health states which combined these acute seizures with other aspects of HRQoL. These vignettes were evaluated by a sample of the UK general public using an online survey and analysed descriptively using the mean and standard deviation.</p><p><strong>Results: </strong>302 participants, representative of the UK general population in terms of age, sex and geographical region, were included in the estimation sample. For the health states representing acute seizures, the focal aware seizure had the highest mean utility value (0.607), followed by the impaired awareness seizure (0.593) and the tonic clonic seizure (0.522). For the health states that also incorporated wider aspects of HRQoL, the health state utility values ranged from 0.504 (one focal aware seizure per year) to 0.337 (at least one focal impaired awareness seizure per week).</p><p><strong>Conclusions: </strong>Seizures may have a major impact of the HRQoL of patients with glioma. The utility values obtained in the study may be used in future economic evaluations of interventions related to glioma where seizures are either a primary clinical outcome or an adverse event.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"23 1","pages":"22"},"PeriodicalIF":3.2,"publicationDate":"2025-03-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11900579/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143604627","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Using prior information to individualize start item selection when assessing physical functioning with the EORTC CAT Core.","authors":"Morten Aa Petersen, Hugo Vachon, Johannes M Giesinger, Mogens Groenvold","doi":"10.1186/s12955-025-02353-3","DOIUrl":"10.1186/s12955-025-02353-3","url":null,"abstract":"<p><strong>Background: </strong>Computerized adaptive test (CAT) provides individualized measurement, using the patient's previous responses to select the next most informative item. However, the first item, the start item, is usually not individualized as no score estimate is available a priori. The European Organisation for Research and Treatment of Cancer (EORTC) CAT Core covers 15 health-related quality of life domains. Scores for one domain may be used to obtain initial score estimates for another domain. We assessed the potential for using such cross-domain information to individualize start item selection for the EORTC CAT Core physical functioning.</p><p><strong>Methods: </strong>The potential for predicting physical functioning (PF) scores from each of the 14 other domains using linear regression was assessed in an international, mixed sample comprising 10,084 cancer patient assessments. Using Monte Carlo CAT simulations, the impact of individually selected PF start items vs. fixed start item for CAT measurement precision was assessed.</p><p><strong>Results: </strong>Depending on the domain predicting PF, the correlation of predicted and observed PF scores ranged 0.25-0.71 and the predicted PF scores were within 1SD of the observed PF scores for 57-85% of the patients. The CAT simulations showed that individually selected start items improved measurement precision for the initial steps of CATs. The application of individual start items had trivial or no impact on measurement precision when the CAT asked three or more items.</p><p><strong>Conclusions: </strong>Simple linear regression may provide useful cross-domain predictions. Using individualized start items may increase measurement precision of the EORTC CAT Core for the initial steps of CAT which may be of relevance for short CATs.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"23 1","pages":"21"},"PeriodicalIF":3.2,"publicationDate":"2025-03-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11892134/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143585463","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Psychometric properties of the Chinese version of the SF-36v2 in patients with severe mental illnesses in China: factor structure, reliability, and validity.","authors":"Yang Wang, Xia Zhang, Jiajia Dong, Jianwen Zhu, Jie Fu, Sizhe Wang, Jinxin Li, Yue Zhang, Jianxiao Zheng, Lu Wen, Dianjiang Li, Hong Fan","doi":"10.1186/s12955-025-02350-6","DOIUrl":"10.1186/s12955-025-02350-6","url":null,"abstract":"<p><strong>Objective: </strong>Patients with severe mental illnesses(SMIs) often experience a diminished quality of life(QOL), and a validated tool to assess their QOL remains lacking. This study aimed to evaluate the psychometric characteristics of SF-36v2 among Chinese SMIs patients to determine its suitability for assessing their QOL.</p><p><strong>Methods: </strong>We conducted a cross-sectional study involving 924 randomly selected SMIs patients from 23 community health centers in Nanjing, China. The reliability of the SF-36v2 was assessed by Cronbach's alpha and split-half reliability. Factor structure was examined by exploratory factor analysis (EFA) and confirmatory factor analysis (CFA). Convergent validity was evaluated using average variance extracted (AVE) and composite reliability (CR).</p><p><strong>Results: </strong>The SF-36v2 scale demonstrated good internal consistency, with a Cronbach's alpha of 0.941 and split-half reliability of 0.965. A slight ceiling effect was observed in the Social Function dimension (17.6%). CFA confirmed the acceptability of the hypothesized model, with the measurement model meeting all relevant fit metrics (X²/ df = 1.552, p < 0.05, RMR = 0.037, GFI = 0.950, AGFI = 0.942, CFI = 0.984, NFI = 0.955, RMSEA = 0.024). For each dimension, AVE > 0.5 and CR > 0.7, indicating good convergent validity of the scale. The square root of the AVE from the variables was greater than the correlation between the dimensions in the model, supporting the scale's discriminant validity. Additionally, the PCS (43.74 ± 10.28) and MCS (43.74 ± 10.28) scores of patients with SMIs were significantly lower than the Chinese general population norm (p < 0.001).</p><p><strong>Conclusions: </strong>The SF-36v2 demonstrated robust psychometric properties, making it a reliable and valid tool for assessing QOL in SMIs patients. Its application can facilitate an objective evaluation of QOL in this population and inform treatment decisions accordingly.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"23 1","pages":"20"},"PeriodicalIF":3.2,"publicationDate":"2025-03-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11887126/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143572860","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Reliability of the electronic patient reported outcome measures for assessing xerostomia, dysphagia and quality of life in Spanish patients with head and neck cancer: a randomised crossover design.","authors":"Mario Lozano-Lozano, Maria Lopez-Garzon, Paula Cuadrado-Guerrero, Paula Postigo-Martin, Carolina Fernández-Lao, Isabel Tovar-Martín, Noelia Galiano-Castillo","doi":"10.1186/s12955-025-02347-1","DOIUrl":"10.1186/s12955-025-02347-1","url":null,"abstract":"<p><strong>Purpose: </strong>To analyse reliability in terms of concordance (agreement) and equivalence of the Patient Reported Outcome Measures (PROM) with an electronic modality (ePROM) of the recognised questionnaires assessing of xerostomia, dysphagia and quality of life (QoL) in Spanish patients with head and neck cancer (HNC). We hypothesised notable reliability and equivalence between the two modalities.</p><p><strong>Methods: </strong>A total of 24 patients (median age 63.00 years, undergone radiotherapy, either alone or in combination with surgery and/or chemotherapy, and suffering xerostomia) were randomised to either paper-based (PROM) or ePROM in a two-arm crossover design with a within-subject comparison of the two modalities (washout period 90 min). Outcome measures of interest were xerostomia: severity itself (Xerostomia Inventory, XI), perceived xerostomia (visual analogue scale, VAS), regional oral dryness (Regional Oral Dryness Inventory, RODI) and dry mouth/sticky saliva (specific head and neck module European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Head and Neck Module, EORTC QLQ-H&N35 and updated EORTC QLQ-H&N43); dysphagia: swallowing burden (Eating Assessment Tool-10, EAT-10) and swallowing (EORTC QLQ-H&N35 and EORTC QLQ-H&N43); and QoL: global health (EORTC QLQ-Core 30, EORTC QLQ-C30). Data concerning the concordance between modalities was evaluated using Spearman correlation coefficients, intraclass correlation coefficients (ICCs) and Bland Altman plots with limits of agreement. In addition, a two one-sided test to check equivalence with clinical importance changes. Finally, 1-week time span separated test and retest of ePROM (only electronic modality) using Wilcoxon test and ICCs.</p><p><strong>Results: </strong>There was excellent concordance (PROM versus ePROM 0.79-0.96) with most differences fell within the limits of agreement. The equivalence analysis showed that the difference between both modalities was not more than a tolerably small amount (P < 0.05), except for dysphagia and QoL. Analysis over time exhibited from good to excellent (0.81-0.93) test-retest stability for the majority of outcome measures.</p><p><strong>Conclusion: </strong>The newly developed ePROMs embedded into LAXER application have showed high level of reliability that supports their implementation in clinical practice, offering a convenient and efficient alternative to paper-based questionnaires. This study shows that electronic adaptations are possible despite the challenging older target population.</p><p><strong>Trial registration: </strong>The study is part of the LAXER study (2021-11-04 / ClinicalTrials.gov: NCT05106608).</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"23 1","pages":"19"},"PeriodicalIF":3.2,"publicationDate":"2025-03-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11877701/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143541470","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Development and psychometric validation of a novel health literacy scale for family caregivers of preschool children.","authors":"Yitong Jia, Xinqi Zhuang, Yanzi Zhao, Ge Meng, Jianzhong Zhang, Yueying Cao, Yin-Ping Zhang","doi":"10.1186/s12955-025-02349-z","DOIUrl":"10.1186/s12955-025-02349-z","url":null,"abstract":"<p><strong>Background: </strong>Health literacy among family caregivers has been found to be strongly correlated with health exposures and outcomes for their children. Accurate assessment of their health literacy contributes to improving child health outcomes. Given the limited evidence on health literacy measures for family caregivers, the study aimed to develop and validate a novel Health Literacy Scale for Family Caregivers of Preschool Children (HLSFC).</p><p><strong>Methods: </strong>The HLSFC was developed in 4 phases: 1) using Nutbeam's conceptual framework of health literacy as a guide to clarify the content to be measured; 2) generating an item pool; 3) providing feedback on the initial items; 4) psychometric analyses. A cross-sectional survey of 443 family caregivers of preschoolers was conducted in Northwest China. Construct validity was assessed using exploratory factor analysis (n = 213) and confirmatory factor analysis (n = 230). Reliability was assessed using internal consistency, split-half reliability, and test-retest reliability.</p><p><strong>Results: </strong>Thirty-Three items were included in the final instrument. Principal component analysis yielded a three-factor structure explaining 70.013% of the total variance. All fitting indices met the standard based upon confirmatory factor analysis. The composite reliability values of the factors ranged from 0.928 to 0.944 (> 0.7), and the average variance extracted values ranged from 0.552 to 0.590 (> 0.5), indicating acceptable convergent validity. The Cronbach's alpha value was 0.963. The test-retest reliability was good, with an intraclass correlation coefficient of 0.909. Sociodemographic factors, such as caregiver education, occupation, residence, and monthly household income per person, were significantly associated with health literacy scores.</p><p><strong>Conclusion: </strong>The HLSFC demonstrated adequate reliability and validity, and can measure a wide range of health literacy skills: from functional to interactive and critical health literacy. It could be potentially applied as an effective tool for the health literacy assessment among family caregivers of preschoolers.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"23 1","pages":"18"},"PeriodicalIF":3.2,"publicationDate":"2025-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11872333/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143537032","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Measuring the quality of life of patients with diabetic retinopathy in northern India: a comparison of generic and vision specific instruments.","authors":"Neha Purohit, Aarti Goyal, Vishali Gupta, Parul Chawla Gupta, Prakash Singh, Shankar Prinja","doi":"10.1186/s12955-025-02340-8","DOIUrl":"10.1186/s12955-025-02340-8","url":null,"abstract":"<p><strong>Background: </strong>Estimation of health-related quality of life (HRQoL) in diabetic retinopathy (DR) patients is important to assess the impact of disease, to monitor the treatment outcomes, and conduct health technology assessments. The study aimed to measure the HRQoL in DR patients using the generic as well as disease specific instruments, identify the determinants of HRQoL, empirically investigate the concurrent validity between the QoL instruments, and to develop statistical approaches to map NEI-VFQ-25 (National Eye Institute- Visual Function Questionnaire- 25) composite score based on EQ-5D-5 L (EuroQol 5-dimensions 5-levels) utility values.</p><p><strong>Methods: </strong>A facility based cross-sectional study was carried out to measure the HRQoL of 300 DR patients using EQ-5D-5 L, EuroQol visual analogue scale (EQ-VAS), and NEI-VFQ-25 instruments. Mean HRQoL scores, along with DR state specific and visual acuity specific utility values were analysed. Pearson correlation coefficient was used to ascertain concurrent validity between NEI-VFQ-25 composite score and its sub-scale scores, EQ-5D-5L index value, and EQ-VAS score. Lastly, we evaluated statistical models using predictor sets based on the EQ-5D-5 L utility scores to estimate NEI-VFQ-25 scores.</p><p><strong>Results: </strong>The mean EQ-5D-5 L utility value for DR patients was 0.69 (95% CI: 0.65-0.73). The mean NEI-VFQ-25 composite score and EQ-VAS score were 61.1 (95% CI: 57.5-64.5), and 67.6 (95% CI: 65.6-69.5), respectively. Both EQ-5D-5 L and EQ-VAS had a strong concurrent validity with NEI-VFQ-25 composite score. 'Tobit regression with log of composite score' was assessed to the preferred model to predict the NEI-VFQ-25 composite score using EQ-5D-5L utility values.</p><p><strong>Conclusion: </strong>Diabetic retinopathy has a decremental impact on quality of life, which increases with severity in vision loss. Both generic as well as disease-specific outcome measures are equally reliable to determine quality of life of patients with DR. The EQ-5D-5 L can be utilized for measurement of HRQoL in DR in clinical settings to optimize time of clinicians, with further derivation of NEI-VFQ-25 values through application of the crosswalk algorithm for predicting vision- related QoL.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"23 1","pages":"17"},"PeriodicalIF":3.2,"publicationDate":"2025-02-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11846259/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143472465","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}