Jermaine M Dambi, Fredrick D Purba, Beatrice K Shava, Anotida R Hove, Shalom R Doyce, Tariro Tunduwani, Ben Domingue, Dixon Chibanda, A Simon Pickard
{"title":"A randomised equivalence study of the EQ-5D-5L Shona versions: evaluation of measurement equivalence between digital and paper formats.","authors":"Jermaine M Dambi, Fredrick D Purba, Beatrice K Shava, Anotida R Hove, Shalom R Doyce, Tariro Tunduwani, Ben Domingue, Dixon Chibanda, A Simon Pickard","doi":"10.1186/s12955-026-02575-z","DOIUrl":"10.1186/s12955-026-02575-z","url":null,"abstract":"<p><strong>Introduction: </strong>Routine assessment of health-related quality of life (HRQoL) of people living with HIV (PLHIV) is essential. We evaluated measurement equivalence between the digital and paper versions of the Shona EQ-5D-5L and examined known-groups validity.</p><p><strong>Methods and materials: </strong>We conducted a parallel randomised study in Zimbabwe with 700 participants allocated equally to the digital and paper groups.</p><p><strong>Results: </strong>The study included 611 participants with a mean age of 37.5 years (SD 12.2). Most were female (70.7%), had secondary education (67.9%), and reported financial inadequacy (68.7%). The digital and paper versions of the EQ-5D-5L Shona demonstrated measurement equivalence. Older age (AOR = 0.60; 95% CI 0.41-0.88; p = 0.008), food insecurity (AOR = 1.80; 95% CI 1.20-2.80; p = 0.01), financial insecurity (AOR = 1.72; 95% CI 1.10-2.69; p = 0.017), and elevated CMD symptoms (AOR = 0.45; 95% CI 0.29-0.68; p < 0.001) were associated with lower HRQoL.</p><p><strong>Conclusion: </strong>This study demonstrated measurement equivalence between the digital and paper versions of the EQ-5D-5L Shona. Both versions can therefore be used confidently in routine clinical care and research. The findings also highlight the need for tailored interventions to improve HRQoL among PLHIV.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":" ","pages":""},"PeriodicalIF":3.9,"publicationDate":"2026-06-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13579888/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148351697","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}
Nana Akwasi Owusu Mensah, Josephine Ampomah Boateng, Isaiah Osei Duah Junior, Albert Kwadjo Amoah Andoh, Godsway Commanda Osei, Sylvester Kyeremeh, Sylvia Agyekum, Gabriel Kwaku Agbeshie, Werner Eisenbarth, Kwadwo Owusu Akuffo
{"title":"Childhood visual impairment and health-related quality of life in Ghana: evidence from a cross-sectional study.","authors":"Nana Akwasi Owusu Mensah, Josephine Ampomah Boateng, Isaiah Osei Duah Junior, Albert Kwadjo Amoah Andoh, Godsway Commanda Osei, Sylvester Kyeremeh, Sylvia Agyekum, Gabriel Kwaku Agbeshie, Werner Eisenbarth, Kwadwo Owusu Akuffo","doi":"10.1186/s12955-026-02565-1","DOIUrl":"10.1186/s12955-026-02565-1","url":null,"abstract":"<p><strong>Background: </strong>Although visual impairment (VI) is known to affect children's development, there is limited evidence on how VI influences health-related quality of life (HRQoL) among children in Ghana. This study aimed to assess the relationship between childhood VI and HRQoL.</p><p><strong>Methods: </strong>A cross-sectional study was conducted among children aged 2 to 18 years in selected districts of the Ashanti Region, Ghana. Comprehensive ocular assessments including visual acuity (VA), refraction, and anterior and posterior segment evaluations were performed. Health-related quality of life was measured using the PedsQL 4.0 across physical, emotional, social, and school functioning domains. Data were analyzed using descriptive statistics, independent-sample t-tests, and linear regression.</p><p><strong>Results: </strong>A total of 581 children participated (mean ± SD age: 8.64 ± 4.00 years), with females representing 53.0% of the sample. Both child-reported and parent-reported scores showed significantly reduced HRQoL among children with VI across all PedsQL domains compared with children without VI, with school (p < 0.001) and emotional (p = 0.005) functions of child-reported showing statistical significance. Presenting VI was a significant predictor of poor overall HRQoL in both simple (β= -10.351, p < 0.001) and multiple linear regression models (β= -5.650, p = 0.016). No significant associations (p > 0.05) were found between HRQoL and sociodemographic variables, including sex, age, ethnicity, work status, and health insurance.</p><p><strong>Conclusions: </strong>Childhood VI is associated with substantial reductions in multiple dimensions of HRQoL. These findings underscore the need to strengthen early detection, clinical management, and school-based vision support services to improve pediatric eye care in Ghana.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":" ","pages":""},"PeriodicalIF":3.9,"publicationDate":"2026-06-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13317335/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148338420","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 multicenter longitudinal study on development and validation of the quality of life scale QLICD-DM (V2.0) for diabetes mellitus based on classical test theory and generalizability theory.","authors":"Yuxi Liu, Chen Zhou, Runmin Guo, Xiaoqing Zhang, Qingqing Zhang, Chonghua Wan, Riling Chen","doi":"10.1186/s12955-026-02573-1","DOIUrl":"10.1186/s12955-026-02573-1","url":null,"abstract":"<p><strong>Purpose: </strong>Quality of life (QOL) research in diabetes has long been a concern with many specific instruments being developed, but no scale for diabetes has been developed based on the modular approach. This study aimed to develop and validate the Diabetes Mellitus Scale of the System of Quality of Life Instruments for Chronic Diseases QLICD-DM (V2.0) by a modular approach and mixed methods.</p><p><strong>Methods: </strong>The Scale was developed based on procedural decision-making methods and by combining the general module and the specific module. The instrument was used to assess the quality of life of 242 diabetic patients both before and after treatments. Under Classical Test Theory (CTT), the psychometric properties of the scale were assessed with regard to validity, reliability and responsiveness by correlation analyses, structural equation modeling, as well as t-tests. In addition, G-study and D-study in Generalizability Theory (GT) were used to validate the scale further.</p><p><strong>Results: </strong>The QLICD-DM (V2.0) was developed with a 14-item specific module and a 28-item general module in the final scale. For all domains, Cronbach's α values were greater than 0.70 with the exception of physical function (0.68), the test-retest reliability correlations r and ICCs were greater than 0.80 with the exception of physical and social function (0.65,0.64). The theoretical construct was supported by correlation analyses and confirmatory factor analysis using structural equation modeling, which demonstrated good construct validity. There were significant differences (P < 0.05) in the domains of physical function, specific module and the total scale before and after treatments. The standardized response means (SRMs) of the physical, psychological, social, and the specific module were 0.36, 0.14, 0.11 and 0.28 respectively. All G-coefficients were all greater than 0.70 with the exception of the physical domain (0.683), further confirming the reliability of the scale further. The overall error was found to be small in the G-study and in the D-study, indicating a high level of accuracy.</p><p><strong>Conclusion: </strong>The QLICD-DM (V2.0) not only integrated characteristics of generic and disease-specific instruments but also demonstrated good reliability, validity, and moderate responsiveness, and it could serve as a quality of life assessment tool for diabetes patients.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":" ","pages":""},"PeriodicalIF":3.9,"publicationDate":"2026-06-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13579986/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148338442","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}
Katharina Ecsy, Luke Skinner, Martin Furze, Dawn Hart, Charlotte Sugden Heron, Amy Page, Larissa Dempsey, Adlene Adnan, Arunesh Sil, Richard D A Hudson, Matthew Bradberry
{"title":"Investigating the impact of chronic graft‑versus‑host disease on patient health‑related quality of life: perspectives from patients and carers.","authors":"Katharina Ecsy, Luke Skinner, Martin Furze, Dawn Hart, Charlotte Sugden Heron, Amy Page, Larissa Dempsey, Adlene Adnan, Arunesh Sil, Richard D A Hudson, Matthew Bradberry","doi":"10.1186/s12955-026-02571-3","DOIUrl":"10.1186/s12955-026-02571-3","url":null,"abstract":"<p><strong>Background: </strong>Chronic graft-versus-host disease (cGvHD) is a common complication that can occur following hematopoietic stem cell transplantation. This complex, multisystemic condition often requires multiple lines of therapy to treat both the symptoms of cGvHD and the side effects associated with these treatments. Comprehensive data on the impact of cGvHD on health-related quality of life (HRQoL) of patients who have undergone multiple lines of therapy, remain limited. Greater awareness of these challenges could lead to more personalized treatment plans and inform future research.</p><p><strong>Methods: </strong>We performed a two-part study to gather qualitative and quantitative data on the experiences and HRQoL of adult patients with cGvHD who had received more than two lines of therapy. Participants took part in a virtual, in-depth interview moderated by a facilitator (qualitative interviews) and/or an online survey (quantitative survey). The qualitative interviews were conducted using a discussion guide, while the quantitative survey designed based on the responses to the qualitative interview also included the European Quality of Life 5 Dimensions 5 Level Version questionnaire.</p><p><strong>Results: </strong>The qualitative interview included 10 participants, while the quantitative survey enrolled 27. patients reported that cGvHD has a profound impact on numerous aspects of HRQoL. Treatment side effects, treatment burden, frequency of medical appointments, and the impact on daily life, finances, education, and mental health were all contributors to diminished HRQoL. Patients reported feeling unprepared for the severity and longevity of cGvHD symptoms and highlighted the need for improved communication between healthcare professionals (HCPs) treating the same patient.</p><p><strong>Conclusions: </strong>cGvHD significantly impacts the HRQoL of patients, with physical, emotional, and financial burdens. Improved education and disease awareness, personalized treatment plans, and better communication between HCPs treating the same patient are crucial to address these challenges in current care practices. Enhanced support services could alleviate the emotional and financial impact on patients, ultimately improving their overall quality of life (QoL).</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":" ","pages":""},"PeriodicalIF":3.9,"publicationDate":"2026-06-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13560328/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148328977","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":"Adverse childhood experiences and well-being in middle-aged men in South Korea: mediating role of andropause symptoms.","authors":"Jeongok Park, Youngkyung Kim, Hyunju Lee","doi":"10.1186/s12955-026-02569-x","DOIUrl":"10.1186/s12955-026-02569-x","url":null,"abstract":"<p><strong>Background: </strong>Middle-aged men in South Korea are in a critical period marked by significant physical and psychosocial transitions. While adverse childhood experiences negatively affect lifelong health, the specific mechanisms affecting well-being during midlife remain underexplored. This study aimed to examine the mediating role of andropause symptoms in the relationship between adverse childhood experiences (ACEs) and well-being.</p><p><strong>Methods: </strong>A cross-sectional survey involving 444 community-dwelling Korean men aged 40-64 years was conducted from June to August 2024. Data were collected via an online questionnaire to assess ACEs, andropause symptoms, and well-being. The SAS 9.4 and PROCESS macro were used for data analysis.</p><p><strong>Results: </strong>The participants had a mean age of 50.8 years. High levels of well-being were significantly associated with being married, higher educational attainment, and higher income. Participants reporting high ACEs had significantly lower levels of well-being than those reporting no ACEs. In the mediating analysis, the indirect effect of andropause symptoms on the relationships between ACEs and well-being was statistically significant (β = -0.08, 95% CI = -0.109 to -0.053). This finding suggests that andropause symptoms partially mediate the relationship between ACEs and well-being in middle-aged men.</p><p><strong>Conclusions: </strong>Andropause symptoms appeared to partially mediated the relationship between ACEs and well-being in middle-aged Korean men. Although both ACEs and andropause symptoms are associated with midlife well-being, they have rarely been addressed together. Community-based programs combining trauma-informed counseling and andropause management are needed to improve well-being in middle-aged men.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":" ","pages":""},"PeriodicalIF":3.9,"publicationDate":"2026-06-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13548565/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148301352","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}
Simon Fifer, Ciro Esposito, Ricardo Correa-Rotter, Mai-Szu Wu, Helmut Reichel, Hesham M Elsayed, Juan Jose Garcia Sanchez, Surendra Pentakota, Thames Kularatne, Richard Hull, Steven Chadban
{"title":"Patient and carer treatment preferences for oral medication in chronic kidney disease: a discrete choice experiment across eight countries.","authors":"Simon Fifer, Ciro Esposito, Ricardo Correa-Rotter, Mai-Szu Wu, Helmut Reichel, Hesham M Elsayed, Juan Jose Garcia Sanchez, Surendra Pentakota, Thames Kularatne, Richard Hull, Steven Chadban","doi":"10.1186/s12955-026-02559-z","DOIUrl":"https://doi.org/10.1186/s12955-026-02559-z","url":null,"abstract":"<p><strong>Background: </strong>Chronic Kidney Disease (CKD) affects over 674 million people globally and can lead to kidney failure, which significantly impairs quality and duration of life. While various oral pharmacological treatment options are available, limited research exists on how patients and carers prioritise treatment attributes. This study explored preferences for oral CKD medication across eight countries, involving 2,324 participants (1,511 patients and 813 carers).</p><p><strong>Methods: </strong>A Discrete Choice Experiment (DCE) was conducted in which participants completed seven hypothetical scenarios, each with two unlabelled treatment options and a \"neither\" (or \"stay on current treatment\") option. Five attributes were assessed: delay in dialysis or transplant, life extension, reduced risk of heart failure hospitalisation, risk of side effects, and out-of-pocket costs. Data were analysed using Mixed Multinomial Logit models, generating separate patient and carer models for each country (16 models), enabling cross-country comparisons.</p><p><strong>Results: </strong>Participants across countries placed the highest importance on delaying dialysis or transplant, followed by life extension, with minimising treatment side effects ranked next. They preferred longer delays for dialysis or transplant, with the seven-year delay being most preferred. Regional and patient-carer variations were observed in attribute importance. Model parameters were used to calculate utility for treatment profiles and simulate preference shares, enabling country-level comparisons.</p><p><strong>Conclusion: </strong>Patients and carers consistently prioritised oral medications that delay the need for dialysis or transplant and extend life, although the relative importance of these attributes differed by country and respondent group. The choice of oral medication in CKD is preference-sensitive, and these results have direct implications for shared decision-making in clinical practice. To support application of these findings, we have developed an interactive dashboard that simulates the impact of medication attributes on predicted uptake across all eight countries: https://cappre.shinyapps.io/CKD_Dapa_DCE/.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":" ","pages":""},"PeriodicalIF":3.9,"publicationDate":"2026-06-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148294668","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Population-based changes in oral health-related quality of life in Australia.","authors":"Xiangqun Ju, Liana Luzzi, Lisa M Jamieson","doi":"10.1186/s12955-026-02570-4","DOIUrl":"10.1186/s12955-026-02570-4","url":null,"abstract":"<p><strong>Background: </strong>Good oral health is crucial for overall well-being; yet many people experience pain, discomfort, or social difficulties due to oral problems. Understanding how Australians' oral health and quality of life have changed over time helps identify whether national dental policies and access to care have improved. The study aimed to assess temporal changes in oral health-related quality of life (OHRQoL) and identify associated risk indicators using the short Oral Health Impact Profile (OHIP-14) instrument among Australian adults.</p><p><strong>Methods: </strong>Data were sourced from the two most recent nationally representative surveys in Australia: National Survey of Adult Oral Health, NSAOH-1 (2004-06) and NSAOH-2 (2017-18). Both are population-based cross-sectional studies conducted in Australia, targeting adults aged 15 years and older. The outcome of interest was oral health-related quality of life (OHRQoL), measured using the validated short-form Oral Health Impact Profile (OHIP-14). Survey-weighted negative binomial regression models were employed to estimate both unadjusted and adjusted mean ratios (MRs) and their 95% confidence intervals (CIs) for OHIP-14 scores. Blinder-Oaxaca decomposition analysis was used to assess the contribution of changes in measured population characteristics to differences in mean OHIP-14 scores between two surveys.</p><p><strong>Results: </strong>In total, 4,170 participants completed the OHIP-14 questionnaire in 2004-06, and 2,836 did so in 2017-18. Between the two survey waves, the mean OHIP-14 score decreased from 7.3 to 5.5. After adjusting for all covariates, participants in NSAOH-1 had a 61% higher mean OHIP-14 score compared to those in NSAOH-2 (MR = 1.61; 95% CI: 1.53-1.70). Higher OHIP-14 scores were found among older adults, lower-educated, lower-income individuals, those with poorer health, smokers, frequent toothache sufferers, and people whose last dental visit was for a problem. The decomposition analysis showed that 41% of the difference in mean OHIP-14 scores was explained by measured population characteristics, Household income, and usual reason for dental visiting made the largest contributions to the explained component (80%), followed by smoking status (15%) and education level (9%).</p><p><strong>Conclusion: </strong>OHRQoL among Australian adults improved over 14 years, reflected by lower mean OHIP-14 scores in NSAOH-2 than NSAOH-1. However, poorer OHRQoL remained associated with older age, female sex, socioeconomic disadvantage, poorer self-rated health and oral health, smoking, toothache, and problem-oriented dental visiting. Decomposition analysis suggested that changes in income and dental visiting patterns partly explained this improvement.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":" ","pages":""},"PeriodicalIF":3.9,"publicationDate":"2026-06-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13548665/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148283587","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}
Kathrin Cresswell, An Jacobs, Anne-Lore Scherrens, Lise Rosquin, Julien Antonio Luyten, Elias David Lundereng, Victoria Freitas-Durks, Lorraine Warrington, Tonje Lundeby, Marianne Jensen Hjermstad, Robin Williams, Kim Beernaert, Nicoleta Mitrea, Geana Paula Kurita, Marie Fallon, Stein Kaasa
{"title":"Exploring perceptions of digital patient reported outcome measures: a multi-site qualitative case study in four European oncology outpatient clinics.","authors":"Kathrin Cresswell, An Jacobs, Anne-Lore Scherrens, Lise Rosquin, Julien Antonio Luyten, Elias David Lundereng, Victoria Freitas-Durks, Lorraine Warrington, Tonje Lundeby, Marianne Jensen Hjermstad, Robin Williams, Kim Beernaert, Nicoleta Mitrea, Geana Paula Kurita, Marie Fallon, Stein Kaasa","doi":"10.1186/s12955-026-02574-0","DOIUrl":"10.1186/s12955-026-02574-0","url":null,"abstract":"<p><strong>Background: </strong>Digital Patient Reported Outcome Measures (PROMs) can help to promote patient-centred care (PCC). However, they are currently not routinely used, potentially compromising patient outcomes. In this work we sought to (i) explore existing processes, patient and healthcare professionals' (HCP) perceptions of current gaps in PCC and (ii) their views on how a PROMs-based digital system could help to address these gaps in four European oncology outpatient clinics.</p><p><strong>Methods: </strong>We conducted a qualitative multi-site case study including healthcare staff (organisational leaders, managers and HCPs), patients being treated for cancer and caregivers in four outpatient clinics in Brussels (Belgium), Edinburgh (United Kingdom), Oslo (Norway), and Valencia (Spain). Data were collected through a series of semi-structured interviews to explore existing work practices, needs and attitudes. We also conducted non-participant observations of staff meetings and clinic activities to explore existing processes. Data were analysed through a mixture of inductive and deductive approaches drawing on the Technology, People, Organizations, and Macroenvironmental (TPOM) factors framework.</p><p><strong>Results: </strong>We conducted 99 interviews with HCPs, patients and caregivers and 30 observations across the four sites. PCC was regarded as important across all sites. We observed limited existing efforts on systematically recording psychosocial needs of patients. Participants reported concerns that a new digital system to record PROMs may result in increased workloads for clinical staff and adversely impact patient-clinician relationships. Attitudes were influenced by previous experience with digital systems. Organisational leadership and support were viewed as crucial in facilitating adoption, including efforts to train and engage clinical and patient users, making available sufficient resources, and including end-users in system design.</p><p><strong>Conclusions: </strong>While digital PROMs have the potential to enhance PCC in cancer, their routine use is often hindered by sociotechnical challenges. This issue persists across different countries. Success in developing and implementing digital PROMs will require tailored system design and implementation strategies being cognisant of various stakeholder needs. This may include supplementing technological aspects of interventions with educational strategies, supporting local adaptations of designs, and aligning with clinician and organisational drivers for implementation.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":" ","pages":""},"PeriodicalIF":3.9,"publicationDate":"2026-06-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13548537/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148283640","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}
Yi-Mei Du, Ji Lu, Hong Zhang, Qin Huang, Bing-Hua Wang, Li Liu
{"title":"Translation, cultural adaptation, and psychometric validation of the simplified Chinese EORTC QLQ-SH22 among cancer patients.","authors":"Yi-Mei Du, Ji Lu, Hong Zhang, Qin Huang, Bing-Hua Wang, Li Liu","doi":"10.1186/s12955-026-02567-z","DOIUrl":"10.1186/s12955-026-02567-z","url":null,"abstract":"<p><strong>Background: </strong>Sexual health is a critical aspect of quality of life in cancer patients. The EORTC QLQ-SH22 (SH22) assesses sexual health-related quality of life (SH-QoL), but no Simplified Chinese version has been validated. This study aimed to translate and culturally adapt the SH22 into Simplified Chinese (SH22-C) and to evaluate its psychometric properties in mainland Chinese cancer patients.</p><p><strong>Methods: </strong>This study comprised two phases. Phase I involved translation and cultural adaptation of the SH22, following the standardized EORTC translation procedure to ensure clarity and cultural relevance. Phase II was a cross-sectional survey in outpatient oncology clinics of a tertiary hospital in mainland China, with 270 adults completing the SH22-C and 30 participants completing a retest after 2 weeks. Psychometric properties assessed included internal consistency, test-retest reliability, structural validity, and convergent/discriminant validity.</p><p><strong>Results: </strong>Cognitive interviews led to revisions of ambiguous sexual activity terms, with no further changes in the second round. Phase II demonstrated excellent internal consistency (Sexual Satisfaction α = 0.93; Sexual Pain α = 0.81) and good test-retest reliability (intraclass correlation coefficients = 0.86 and 0.84, respectively; single-item r = 0.73-0.88). Confirmatory factor analysis confirmed a two-factor structure with acceptable fit and factor loadings of 0.62-0.92. Strong convergent validity and low inter-factor correlation (r = - 0.26) supported discriminant validity.</p><p><strong>Conclusions: </strong>The SH22-C showed good cultural equivalence, reliability, and validity in mainland Chinese cancer patients and provides a valid and practical tool for assessing SH-QoL.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":" ","pages":""},"PeriodicalIF":3.9,"publicationDate":"2026-06-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13548554/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148277319","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}
Anouk Lamé, Jan Heijdra Suasnabar, Esmee Adam, Ron Handels, Hanneke J A Smaling, Miriam L Haaksma, M Elske van den Akker-van Marle
{"title":"Preference-based measures in people with dementia: a systematic review of psychometric properties.","authors":"Anouk Lamé, Jan Heijdra Suasnabar, Esmee Adam, Ron Handels, Hanneke J A Smaling, Miriam L Haaksma, M Elske van den Akker-van Marle","doi":"10.1186/s12955-026-02563-3","DOIUrl":"10.1186/s12955-026-02563-3","url":null,"abstract":"<p><strong>Purpose: </strong>Accurate measurement of health and well-being outcomes is essential for economic evaluations of dementia care interventions. However, the suitability of existing preference-based measures (PBMs) for people with dementia remains uncertain. This review aims to provide guidance in measurement choice by assessing the psychometric properties of PBMs in people with dementia.</p><p><strong>Methods: </strong>A systematic review was conducted of studies indexed in PubMed, Embase, PsycINFO and Web of Science up to July 2025. Studies were eligible if they evaluated psychometric properties of PBMs in people with dementia. Title and abstract screening were performed using a validated AI-powered tool, ASReview. The quality of the included studies and psychometric properties of the PBMs were assessed using the COSMIN methodology.</p><p><strong>Results: </strong>A total of 21,347 records were identified, of which 32 studies covering fourteen different PBMs were included. The EQ-5D-3L was used in most studies, and studies focused mainly on construct validity and reliability. Study quality was predominantly high, while most psychometric evidence was inconsistent or insufficient. The ICECAP-O and HUI2 demonstrated the most appropriate psychometric evidence.</p><p><strong>Conclusion: </strong>Evidence of psychometric properties of PBMs is insufficient for some measures and limited for other measures. Therefore, none can yet be recommended as fully appropriate for use in people with dementia. This underscores the need for further validation studies to improve preference-based outcome measurement, and to strengthen economic evaluations of dementia care interventions.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":" ","pages":""},"PeriodicalIF":3.9,"publicationDate":"2026-06-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13548697/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148271326","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}