Health and Quality of Life Outcomes最新文献

{"title":"A life that's worth living - measuring health-related quality of life among people treated for tuberculosis in Viet Nam: a longitudinal EQ-5D-5L survey.","authors":"Luan Nguyen Quang Vo, Rachel Forse, Andrew James Codlin, Huy Ba Huynh, Anja Maria Christine Wiemers, Jacob Creswell, Tushar Garg, Thi Minh Ha Dang, Lan Huu Nguyen, Hoa Binh Nguyen, Luong Van Dinh, Nhung Viet Nguyen, Tom Wingfield, Kristi Sidney Annerstedt, Jad Shedrawy, Knut Lönnroth","doi":"10.1186/s12955-025-02369-9","DOIUrl":"https://doi.org/10.1186/s12955-025-02369-9","url":null,"abstract":"<p><strong>Background: </strong>In many settings, Tuberculosis (TB) represents a catastrophic life event that substantially impairs a person's Health-Related Quality of Life (HRQoL). We aimed to measure HRQoL among people with TB in Viet Nam at initiation and throughout treatment.</p><p><strong>Methods: </strong>This study took place in four provinces from Oct-2020 to Sep-2022. Persons initiated on TB treatment were consecutively recruited across three pathways to access care: passive case finding (NTP); active case finding (ACF); and private sector engagement (PPM). We conducted the EuroQol-5-Dimension-5-Level (EQ-5D-5L) survey during the intensive, continuation, and post-treatment phase. We described participant characteristics, assessed the survey's psychometric properties, and calculated utility indexes using a Vietnamese value set. We reported these alongside visual analog scale (EQ-VAS) scores and EQ-5D-5L dimensions by treatment stage, care pathway and other participant characteristics. Mixed-effect Tobit models were fitted to identify relevant associations with HRQoL, which we compared to general population benchmarks.</p><p><strong>Results: </strong>We recruited 585 participants (23.6% female) with a median age of 51 years. EQ-5D-5L dimensions at baseline showed that 53.8% experienced pain/discomfort and 35.0% felt anxiety/depression, while 33.8%, 30.4%, and 9.6% reported problems with carrying out usual activities, mobility, and self-care, respectively. The mean utility index was 0.83 (95% confidence interval: [0.82, 0.85]) and mean EQ-VAS was 67.1 (95%CI: [65.6, 68.6]). Post-treatment, HRQoL improved significantly on all dimensions and composite measures. While utility indexes were at parity with general population benchmarks (0.90; 95%CI: [0.89, 0.92] vs. 0.91), self-reported EQ-VAS scores remained significantly lower (79.4; 95%CI: [78.1, 80.6] vs. 87.4). HRQoL was higher at baseline in the ACF versus the NTP cohorts on utility index (0.87 vs. 0.82; p = 0.003) and EQ-VAS score (70.4 vs. 65.5; p = 0.015). The EQ-5D-5L tool demonstrated moderate to high validity on Cronbach's alpha (0.75 ≤ α ≤ 0.84) and Spearman's rho (0.4679 ≤ ρ₀ ≤ 0.5651) across treatment stages and various known groups.</p><p><strong>Conclusion: </strong>TB significantly impairs HRQoL among affected Vietnamese people. While treatment partially remedies these impairments, they may persist post-TB. Hence, physical, psychological and social rehabilitation during and after therapy should receive more attention. We found evidence that ACF may mitigate TB-related declines in HRQoL, but tailored studies are needed to substantiate these findings.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"23 1","pages":"43"},"PeriodicalIF":3.2,"publicationDate":"2025-04-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12016289/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143995143","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":"Association of self-efficacy, risk attitudes, and time preferences with health-related quality of life and functioning after total hip or knee replacement - Results of the MobilE-TRA 2 cohort.","authors":"Sebastian Fuchs, Lars Schwettmann, Benedict Katzenberger, Alexander Paulus, Boris Michael Holzapfel, Johanna Theresia Biebl, Martin Weigl","doi":"10.1186/s12955-025-02374-y","DOIUrl":"10.1186/s12955-025-02374-y","url":null,"abstract":"<p><strong>Background: </strong>While total hip and knee replacement (THR/TKR) surgery are effective measures to restore functioning and reduce pain in patients with severe osteoarthritis (OA), long-term treatment effects vary among patients. Following behavioral economic theory, these differences may be partially attributed to the impact of personality traits on individual strategies to approach post-surgical challenges. This study explored the associations between self-efficacy, willingness to take risk regarding health (H-WTTR), and future orientation, and the 3-month course of health-related quality of life (HRQoL) and OA-specific health status.</p><p><strong>Methods: </strong>As part of the prospective and observational MobilE-TRA 2 cohort study, 147 patients aged 60 years and older were assessed by self-administered questionnaires before and three months after THR/TKR at a single German hospital. As indicators for the surgical outcome, HRQoL was assessed by the EuroQol Five-Dimensional Five-Level Questionnaire (EQ-5D-5L), including the visual analogue scale (EQ-VAS), and functioning was assessed by the Western Ontario and McMaster Universities Osteoarthritis Index (WOMAC) using the global score, function score, and pain score. All WOMAC scores were transformed into scales with 0 = worst health and 100 = best health. Self-efficacy was measured using the General Self-Efficacy Short Scale. H-WTTR and future orientation were assessed by single-item questions on 11-point Likert scales. The associations between these personality traits and the 3-month change in the outcome scores were analyzed using linear regression models for THR and TKR respectively.</p><p><strong>Results: </strong>In THR patients a one-point-increase in self-efficacy was associated with improvements in EQ-5D-5L (β=0.0704; p=0.0099), WOMAC global (β=6.6337; p=0.0139), WOMAC function (β=8.2557; p=0.0046), and WOMAC pain (β=5.9994; p=0.0232). For TKR, only the association of self-efficacy with the EQ-VAS change-score was significant (β=5.8252; p=0.0482). Self-efficacy demonstrated weak positive, but not significant associations with all WOMAC scores and a negative association close to zero with the EQ-Index. H-WTTR and future orientation showed no significant associations to changes of the outcome scores.</p><p><strong>Conclusions: </strong>Self-efficacy appears to be a prognostic factor for better THR/TKR outcomes after three months. If these findings can be confirmed in further research, strategies to improve self-efficacy should be considered in prehabilitation programs.</p><p><strong>Trial registration: </strong>Not applicable.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"23 1","pages":"44"},"PeriodicalIF":3.2,"publicationDate":"2025-04-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12020169/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143999177","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":"Perceived treatment burden and health-related quality of life in association with healthcare utilisation among patients attending multiple outpatient clinics.","authors":"Cathrine Bell, Charlotte Weiling Appel, Asger Roer Pedersen, Peter Vedsted","doi":"10.1186/s12955-025-02366-y","DOIUrl":"https://doi.org/10.1186/s12955-025-02366-y","url":null,"abstract":"<p><strong>Introduction: </strong>Patients with multimorbidity who frequently require healthcare may experience a higher treatment burden. In this study, we investigated whether high perceived treatment burden and low perceived health-related quality of life (HRQoL) were associated with healthcare utilisation among patients who attended at least two medical outpatient hospital clinics.</p><p><strong>Methods: </strong>Patients who underwent medical treatment in two or more outpatient medical clinics at Silkeborg Regional Hospital in Denmark in August 2018 were included. The patients received a questionnaire containing the Multimorbidity Treatment Burden Questionnaire and the Short Form-12 questionnaire measuring HRQoL in terms of physical and mental health. Information on healthcare utilisation was collected from electronic registers one year prior to receiving the questionnaire. Logistic regression was applied to estimate the odds of 'no/low' and 'high' perceptions of treatment burden and 'low' self-rated HRQoL in relation to healthcare utilisation.</p><p><strong>Results: </strong>In total, 930 patients (59.8%) answered the questionnaire. The degree of patient-assessed treatment burden was not associated with the number of outpatient contacts, hospital admissions or admission days. A high perceived treatment burden was associated with a high number of general practice contacts, whereas a low treatment burden was associated with fewer contacts in general practice, indicating a dose‒response pattern. The same pattern of associations was observed for perceived physical and mental health.</p><p><strong>Conclusion: </strong>Patients with high perceived treatment burden and low HRQoL seemed to consult their general practitioner primarily despite hospital involvement. These patients may require frequent primary care attention due to other factors than those being treated at the hospital. However, further research is warranted to explore the mechanisms underlying these associations and strategies for reducing treatment burden and enhancing HRQoL in patients with multiple medical conditions.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"23 1","pages":"42"},"PeriodicalIF":3.2,"publicationDate":"2025-04-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12013174/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144011367","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 novel child-centred core palliative care outcome measure for use in clinical practice and research: findings from a multinational validation study.","authors":"Eve Namisango, Fliss E M Murtagh, Katherine Bristowe, Julia Downing, Richard A Powell, Mackuline Atieno, Margaret Sandham, Zipporah Ali, Michelle Meiring, Faith N Mwangi-Powell, Melanie Abbas, Lorna K Fraser, Irene J Higginson, Richard Harding","doi":"10.1186/s12955-025-02346-2","DOIUrl":"https://doi.org/10.1186/s12955-025-02346-2","url":null,"abstract":"&lt;p&gt;&lt;strong&gt;Background: &lt;/strong&gt;Outcome measurement is pivotal to person-centred assessment, quality improvement and research. Children and young people with life-limiting and -threatening illness have high needs and service use, yet there is a lack of evidence for interventions and care models. Efforts to strengthen paediatric palliative care (PPC) services has been hampered by the lack of an appropriate outcome measure.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Objective: &lt;/strong&gt;To determine the validity, reliability, measurement invariance, responsiveness, acceptability, and interpretability properties of the novel Children's Palliative care Outcome Scale (C-POS).&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Methods: &lt;/strong&gt;We recruited children (0-17 years) with life-limiting/life threatening conditions and their families in Kenya, Uganda and South Africa. Using C-POS repeated measurement using over four timepoints. We assessed: 1) construct validity (structural properties, discriminant validity, known groups validity, measurement invariance, differential item functioning by country), 2) reliability (internal consistency and test re-test), 3) responsiveness, 4) acceptability (time to complete) and 5) interpretability.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Results: &lt;/strong&gt;We recruited a cohort of 434 children (response rate 94%). Of these, 302 participated in the repeated measures component and 279 (92%) completed four datapoints. We found evidence for face and content validity as the C-POS items mapped on to themes developed from qualitative interviews, including: pain and other symptoms, pyscho-social well-being, and family wellbeing that matter to children and their families. We confirmed: 1) the two-factor structure (child and family subscales). We also confirmed discriminant and known groups validity, as well as construct equivalence for the child self-report and proxy versions. Controlling for age, we found no differential item functioning by country setting. 2)The sub-scale internal consistency was moderate, given the multi-dimensional nature of the C-POS self and proxy report versions omega scores (0.67 and 0.73, respectively). The test characteristic curve information confirmed the moderate internal subscale consistency scores between 0.3- 0.9 for the proxy version and 0.3-0.5 for the self-report version. Test-retest reliability was acceptable for all items, with weighted kappa range for scores: self-report (0.43-0.57) and proxy version (0.35-0.64) and family items (0.51-0.71). 3)Responsiveness was demonstrated, except for the feeding item. 4)Median completion time at the last visit was 10 min for both versions with minimal missing data. 5)The minimum important difference was 3 for the self and proxy report versions on a scale of 0-30 and 4 for the child and family scale on a scale of 0-55.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Conclusions and relevance: &lt;/strong&gt;The C-POS has good psychometric properties. To further improve the measure, we identified items for potential removal, conceptual gaps that should be addressed and domains f","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"23 1","pages":"41"},"PeriodicalIF":3.2,"publicationDate":"2025-04-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12010634/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143968146","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":"Estimating a preference-based index for patients with myasthenia gravis from the MGQoL-6D measure.","authors":"Richard Huan Xu, Richard Norman, Ji Liu, Dong Dong","doi":"10.1186/s12955-025-02370-2","DOIUrl":"https://doi.org/10.1186/s12955-025-02370-2","url":null,"abstract":"<p><strong>Objective: </strong>Myasthenia gravis is a chronic neuromuscular disease that causes weakness. It's uncertain whether generic health instruments can adequately capture its impact. This study aimed to develop a scoring system to generate utility values for all health states defined by the myasthenia gravis quality of life 6-dimension (MGQoL-6D) classification in Chinese patients with myasthenia gravis (MG).</p><p><strong>Methods: </strong>The data used in this study were obtained from a web-based cross-sectional study conducted in China. Patients with MG were invited to complete an online discrete choice experiment (DCE) survey. Each participant completed 10 randomly assigned choice pairs from a set of 40 choice pairs, with each pair comprising two health states and a duration attribute. Conditional logistic regression analysis was employed to analyse the data, which included responses from 300 patients.</p><p><strong>Results: </strong>Utility decrements estimated by conditional logit regression were generally monotonic, with the largest decrements observed for emotion (- 0.419), social activity (- 0.323), and hobbies and fun activities (- 0.323). The MGQoL-6D utility scores ranged between - 0.559 and 1.</p><p><strong>Conclusion: </strong>This study established utility weights for the MGQoL-6D that can facilitate cost-utility analyses related to MG-related health interventions and technologies.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"23 1","pages":"40"},"PeriodicalIF":3.2,"publicationDate":"2025-04-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12010639/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143984187","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 and measurement invariance of the health behavior scale for cancer patients in Chinese cancer population.","authors":"Xiaoxiao Hu, Yang Li, Hongwen Ma, Lina Xiong, Jiping Tan, Yanfei Jin","doi":"10.1186/s12955-025-02368-w","DOIUrl":"https://doi.org/10.1186/s12955-025-02368-w","url":null,"abstract":"<p><strong>Background: </strong>Health behavior plays a major role in the development, progression, and prognosis of cancer. The Health Behavior Scale for Cancer Patients (HBSCP) can be used to assess the level of health behavior in cancer patients. This study aimed to explore its psychometric properties and Measurement Invariance (MI) in the Chinese cancer population.</p><p><strong>Methods: </strong>A longitudinal study was conducted with 567 cancer patients across two hospitals, and 428 participants underwent a second assessment three months later. Analyses were performed to evaluate reliability (internal consistency), validity (structural validity, convergent validity, and criterion-related validity), and MI of the Chinese version of the HBSCP.</p><p><strong>Results: </strong>The two-factor structural model of the 9-item scale demonstrated an excellent fit in Confirmatory Factor Analysis (CFA). Psychometric analyses indicated strong internal consistency, with Cronbach's alpha coefficients ranging from 0.846 to 0.899 and McDonald's Omega values between 0.847 and 0.897. Convergent validity was supported by Composite Reliability (CR > 0.70) and Average Variance Extracted (AVE > 0.50). Criterion-related validity was established via significant correlations with the Health-Promoting Lifestyle Profile II (HPLP-II; r = 0.653 ~ 0.760). Multi-group CFA further confirmed MI across cancer types (ΔCFI&TLI < 0.01; ΔRMSEA < 0.015) and time groups (3-month interval).</p><p><strong>Conclusions: </strong>This study provides longitudinal evidence supporting the adequate psychometric properties and temporal stability of the Chinese version of the HBSCP, thus validating its utility for measuring health behavior in Chinese cancer populations. The Chinese HBSCP can serve as a tool for healthcare providers to assess the current status and changes in health behavior among cancer patients.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"23 1","pages":"39"},"PeriodicalIF":3.2,"publicationDate":"2025-04-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12001631/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144013840","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":"Associations between sarcopenia and domains of quality of life in older adults: a population-based cross-sectional study.","authors":"Emma C West, Lana J Williams, Jessica A Davis, Julie A Pasco","doi":"10.1186/s12955-025-02358-y","DOIUrl":"https://doi.org/10.1186/s12955-025-02358-y","url":null,"abstract":"<p><strong>Background: </strong>Sarcopenia is an age-related skeletal muscle disorder associated with deleterious health outcomes. Few studies have examined associations between sarcopenia and quality of life (QoL). Therefore, the purpose of this study was to determine whether sarcopenia is independently associated with specific domains of QoL.</p><p><strong>Methods: </strong>This cross-sectional study examined associations between sarcopenia and domains of QoL in a population-based sample of 682 adults aged 60-96 years. Sarcopenia was defined according to the revised European Working Group on Sarcopenia in Older People algorithm. Appendicular lean mass was assessed using dual-energy Xray absorptiometry, handgrip strength by dynamometry, and physical performance using the Timed UupandGo test. The World Health Organisation's abbreviated QoL tool was used to assess QoL across four domains: physical health, psychological, social relationships and environment. Multivariable logistic regression was used to investigate associations between sarcopenia and poor QoL.</p><p><strong>Results: </strong>After adjusting for potential covariates, sarcopenia (either probable or confirmed) was associated with an increased likelihood for poor physical health-related QoL [OR 2.77 (95% CI 1.31-5.88)] and poor psychological-related QoL [OR 2.69 (95% CI 1.41-5.15)]. No associations were detected between sarcopenia and the social relationships or environment domains.</p><p><strong>Conclusions: </strong>These findings highlight the importance of maintaining skeletal muscle health in older age. Interventions to prevent or manage sarcopenia among older adults may contribute to better QoL for this population and warrant further investigation.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"23 1","pages":"38"},"PeriodicalIF":3.2,"publicationDate":"2025-04-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11998198/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144009763","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 artificial intelligence to predict patient outcomes from patient-reported outcome measures: a scoping review.","authors":"Zuzanna Wójcik, Vania Dimitrova, Lorraine Warrington, Galina Velikova, Kate Absolom","doi":"10.1186/s12955-025-02365-z","DOIUrl":"10.1186/s12955-025-02365-z","url":null,"abstract":"<p><strong>Purpose: </strong>This scoping review aims to identify and summarise artificial intelligence (AI) methods applied to patient-reported outcome measures (PROMs) for prediction of patient outcomes, such as survival, quality of life, or treatment decisions.</p><p><strong>Introduction: </strong>AI models have been successfully applied to predict outcomes for patients using mainly clinically focused data. However, systematic guidance for utilising AI and PROMs for patient outcome predictions is lacking. This leads to inconsistency of model development and evaluation, limited practical implications, and poor translation to clinical practice.</p><p><strong>Materials and methods: </strong>This review was conducted across Web of Science, IEEE Xplore, ACM, Digital Library, Cochrane Central Register of Controlled Trials, Medline and Embase databases. Adapted search terms identified published research using AI models with patient-reported data for outcome predictions. Papers using PROMs data as input variables in AI models for prediction of patient outcomes were included.</p><p><strong>Results: </strong>Three thousand and seventy-seven records were screened, 94 of which were included in the analysis. AI models applied to PROMs data for outcome predictions are most commonly used in orthopaedics and oncology. Poor reporting of model hyperparameters and inconsistent techniques of handling class imbalance and missingness in data were found. The absence of external model validation, participants' ethnicity information and stakeholders involvement was common.</p><p><strong>Conclusion: </strong>The results highlight inconsistencies in conducting and reporting of AI research involving PROMs in patients' outcomes predictions, which reduces the reproducibility of the studies. Recommendations for external validation and stakeholders' involvement are given to increase the opportunities for applying AI models in clinical practice.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"23 1","pages":"37"},"PeriodicalIF":3.2,"publicationDate":"2025-04-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11987430/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143993654","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":"Construct validity of measures of care home resident quality of life: cross-sectional analysis using data from a pilot minimum data set in England.","authors":"Stephen Allan, Stacey Rand, Ann-Marie Towers, Kaat De Corte, Freya Tracey, Elizabeth Crellin, Therese Lloyd, Rachael E Carroll, Sinead Palmer, Lucy Webster, Adam Gordon, Nick Smith, Gizdem Akdur, Anne Killett, Karen Spilsbury, Claire Goodman","doi":"10.1186/s12955-025-02356-0","DOIUrl":"10.1186/s12955-025-02356-0","url":null,"abstract":"<p><strong>Background: </strong>To maintain good standards of care, evaluations of policy interventions or potential improvements to care are required. A number of quality of life (QoL) measures could be used but there is little evidence for England as to which measures would be appropriate. Using data from a pilot Minimum Data Set (MDS) for care home residents from the Developing resources And minimum dataset for Care Homes' Adoption (DACHA) study, we assessed the discriminant construct validity of QoL measures, using hypothesis testing to assess the factors associated with QoL.</p><p><strong>Methods: </strong>Care home records for 679 residents aged over 65 from 34 care homes were available that had been linked to health records and care home provider data. In addition to data on demographics, level of needs and impairment, proxy report measures of social care-, capability- and health-related QoL of participants were completed (ASCOT-Proxy-Resident, ICECAP-O, EQ-5D-5L Proxy 2). Discriminant construct validity was assessed through testing hypotheses developed from previous research and QoL measure constructs. Multilevel regression models were analysed to understand how QoL was influenced by personal characteristics (e.g. sex, levels of functional and cognitive ability), care home level factors (type of home, level of quality) and resident use of health services (potentially avoidable emergency hospital admissions). Multiple imputation was used to address missing data.</p><p><strong>Results: </strong>All three QoL measures had acceptable construct validity and captured different aspects of QoL, indicated by different factors explaining variation in each measure. All three measures were negatively associated with levels of cognitive impairment, whilst ICECAP-O and EQ-5D-5L Proxy 2 were negatively associated with low levels of functional ability. ASCOT-Proxy-Resident was positively associated with aspects of quality and care effectiveness at both resident- and care home-level.</p><p><strong>Conclusion: </strong>The study found acceptable construct validity for ASCOT-Proxy-Resident, ICECAP-O and EQ-5D-5L Proxy 2 in care homes, with findings suggesting the three are complementary measures based on different constructs. The study has also provided evidence to support the inclusion of these QoL measures in any future MDS.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"23 1","pages":"33"},"PeriodicalIF":3.2,"publicationDate":"2025-04-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11972536/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143788335","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":"Validation of the Danish translation of the atrial fibrillation severity scale: a study on linguistic and cultural adaptation.","authors":"Mads Hashiba, Trine Bernholdt Rasmussen, Morten Kjøbek Lamberts, Sebastian Kinnberg Nielsen, Signe Stelling Risom","doi":"10.1186/s12955-025-02362-2","DOIUrl":"10.1186/s12955-025-02362-2","url":null,"abstract":"<p><strong>Background: </strong>Atrial fibrillation (AF) stands as the most common cardiac arrhythmia on a global scale with a substantial symptom burden impacting the quality of life (QoL) of patients with AF. Consequently, assessing and monitoring symptoms in patients with AF has gained increased interest, leading to a rise in patient-reported outcome measures (PROMs). PROMs provide valuable insights into the patient's perspective, allowing for a more patient-centric approach to care. One of these PROMs is the Atrial Fibrillation Severity Scale (AFSS), a convenient and straightforward instrument for assessing symptom severity in patients with AF, potentially enabling healthcare professionals to tailor interventions accordingly. However, no Danish version of AFSS exists. This study aims to translate and linguistically validate the AFSS in accordance with MAPI Research Trust Guidelines.</p><p><strong>Methods: </strong>The translation of AFSS from English to Danish was conducted using forward and backward translation, yielding versions 1 and 2, respectively. Afterwards, the translated AFSS was linguistically validated in patients with AF by cognitive interviews producing a third version. The third version was then proofread, finalizing the Danish version of AFSS.</p><p><strong>Results: </strong>Derived from the cognitive interviews, the Danish version of AFSS demonstrated comprehensibility and readability among all included patients with AF. No revisions were deemed necessary based on the patient testing, culminating in the submission of the final version of AFSS for approval.</p><p><strong>Conclusion: </strong>A certified and linguistically validated Danish version of the AFSS has been established and is accessible through MAPI Trust Research.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"23 1","pages":"36"},"PeriodicalIF":3.2,"publicationDate":"2025-04-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11972482/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143788306","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}