Jonathan L Nazari, Maja Kuharic, Justin Yu, A Simon Pickard
{"title":"Exploration of visual analogue scale versions with the EQ-HWB-9 to measure health, social care, and carer-related quality of life: a VASt landscape.","authors":"Jonathan L Nazari, Maja Kuharic, Justin Yu, A Simon Pickard","doi":"10.1007/s11136-026-04369-8","DOIUrl":"10.1007/s11136-026-04369-8","url":null,"abstract":"<p><strong>Purpose: </strong>Visual analog scales (VAS) serve as brief, informative patient reported outcome measures. The EQ VAS is an important component of EQ-5D instruments but is not currently included in the EQ-HWB-9. This study qualitatively assessed perceptions of alternative VAS constructs and recall periods for potential inclusion alongside the EQ-HWB-9 and quantitatively examined VAS ratings.</p><p><strong>Methods: </strong>US adults who were: (1) diagnosed with chronic illness; (2) unpaid caregivers; (3) social care users (e.g., received caregiving, living with disability) completed an online survey and interview where they assessed VAS versions with health, health and wellbeing (HWB), and/or quality of life (QoL), as the specified construct. Participants discussed construct interpretation, appropriateness of recall periods (none, today, past 7 days), and whether these influenced their responses. Interviews were analyzed qualitatively through thematic analysis.</p><p><strong>Results: </strong>Among 34 participants, mean (SD) responses for health, HWB, and QoL were 61.9 (SD = 21.3), 60.9 (SD = 21.8) and 66.4 (SD = 21.5), respectively. All three VAS items were strongly correlated (r = 0.84-0.96). Interpretations of health focused on clinical, physical health more than mental/emotional health, HWB indicated mental/emotional health, and QoL evoked broader assessments encompassing finances or social-relationships. Most participants preferred having no specified recall period, allowing consideration of timeframes relevant to their experiences.</p><p><strong>Conclusion: </strong>Although quantitative results suggested that the constructs of health, HWB, and QoL were similar, qualitative results found that they were perceived differently, highlighting the importance of a mixed-methods approach. Further research in larger samples and other countries could help to inform the extent to which constructs and recall periods affect VAS responses.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":"35 9","pages":""},"PeriodicalIF":3.4,"publicationDate":"2026-08-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13451295/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148689777","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Owis Eilayyan, Firas Hudaib, Saionara Camara, Carmen-Lucia Curcio, Cristiano Dos Santos Gomes, Fernando Gomez, Ricardo Oliveira Guerra, Mohammad Auais
{"title":"Comparing the determinants of health perception and quality of life over time in heart and lung diseases: structural equation modeling.","authors":"Owis Eilayyan, Firas Hudaib, Saionara Camara, Carmen-Lucia Curcio, Cristiano Dos Santos Gomes, Fernando Gomez, Ricardo Oliveira Guerra, Mohammad Auais","doi":"10.1007/s11136-026-04357-y","DOIUrl":"10.1007/s11136-026-04357-y","url":null,"abstract":"<p><strong>Purpose: </strong>To estimate the longitudinal interrelationship between health, personal, and environmental predictors of Quality of life (QOL) and their impact on QOL among older adults with heart or pulmonary diseases.</p><p><strong>Methods: </strong>This longitudinal study analyzed data from the International Mobility in Aging Study. Structural equation modeling, guided by Wilson and Cleary model, was used to estimate the relationships among baseline factors (depression, clinical and demographic variables), intermediate outcomes at two-year follow-up (self-efficacy, physical function, and health perception), and QOL at four-year follow-up. Multi-group analysis was conducted to assess differences in health predictors between lung and heart diseases.</p><p><strong>Results: </strong>A total of 479 people were included, with 144 and 335 people reported having pulmonary and heart diseases, respectively. Among people with lung diseases, lower depression, multi-morbidity, and high self-efficacy, health perception, and physical function positively influenced QOL. Among people with heart diseases, lower depression, multi-morbidity, high level of hemoglobin, male gender, non-smoking, high self-efficacy, health perception, and physical function were positively associated with QOL. Heart and pulmonary conditions showed some variations in the strength and significance of these associations; however, multi-group analysis revealed no statistically significant differences between groups.</p><p><strong>Conclusion: </strong>QOL in older adults with heart or lung conditions is associated with a number of interrelated factors, including physical function, psychological factors, and health perception. The results highlight the importance of comprehensive assessment using patient-reported outcome measures and support multidisciplinary rehabilitation and self-management approaches that address physical and psychological burden.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":"35 9","pages":""},"PeriodicalIF":3.4,"publicationDate":"2026-08-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148670712","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
David S Tulsky, Aaron J Boulton, Pamela A Kisala, Callie E Tyner, Jerry Slotkin
{"title":"Examining the factor structure of health-related quality of life in spinal cord injury using confirmatory factor analysis and multidimensional scaling.","authors":"David S Tulsky, Aaron J Boulton, Pamela A Kisala, Callie E Tyner, Jerry Slotkin","doi":"10.1007/s11136-026-04354-1","DOIUrl":"10.1007/s11136-026-04354-1","url":null,"abstract":"<p><strong>Purpose: </strong>Spinal cord injury (SCI) is a complex medical condition and managing the multiple, co-occurring symptoms and functional and social limitations that follow SCI is a challenging task for clinical care providers. Understanding how the various post-SCI symptoms and limitations are interrelated or cluster together can inform patient care and improve clinical workflows. The purpose of this study was to determine the factor structure of the SCI-QOL measurement system and associated symptom clusters that affect health-related quality of life (HRQOL) in individuals with SCI.</p><p><strong>Methods: </strong>Participants were individuals with SCI living in the community (> 1 year after injury) recruited from 8 rehabilitation hospitals in the U.S. who completed 18 Spinal Cord Injury - Quality of Life (SCI-QOL) outcomes measures representing domains of physical, medical, social, and emotional health. Two dimension-reduction techniques, confirmatory factor analysis and multidimensional scaling, were used to analyze the data.</p><p><strong>Results: </strong>Factor analysis results suggest 7 common factors underlying the measures: Physical Symptoms, Physical Function, Negative Affect, Positive Affect, Social Health, Independence, and Pain Interference. The psychosocial factors of Negative Affect, Positive Affect, and Social Health were highly interrelated. Large correlations were also observed between Physical Function and Independence, and between Physical and Social Health. All other interrelations were small to moderate. Results from the multidimensional scaling analysis were largely consistent with those from the factor analysis.</p><p><strong>Conclusion: </strong>Study results will help inform the development of composite scores and symptom profiles in SCI, which will help researchers and clinicians better understand and manage symptoms following SCI.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":"35 9","pages":""},"PeriodicalIF":3.4,"publicationDate":"2026-08-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13433718/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148670639","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Yanna Zhou, Yifan Ding, Jan Busschbach, Xiuquan Shi, Zhihao Yang
{"title":"Studying different variations of ranking method to explore health related quality of life dimensions prioritization.","authors":"Yanna Zhou, Yifan Ding, Jan Busschbach, Xiuquan Shi, Zhihao Yang","doi":"10.1007/s11136-026-04350-5","DOIUrl":"10.1007/s11136-026-04350-5","url":null,"abstract":"<p><strong>Purpose: </strong>Researchers have argued that EQ-5D may not capture all aspects in health-related quality of life (HRQoL), they therefore proposed adding additional dimensions. However, whether additional dimensions are more important than EQ-5D dimensions is unknown. This study aimed to explore the impact of four different ranking tasks on eliciting health preferences and assess which ranking task provides better consistency and test-retest reliability.</p><p><strong>Methods: </strong>Besides the five EQ-5D dimensions, nine HRQoL dimensions were selected, including culturally universal dimensions and culturally specific dimensions relevant to Chinese. To evaluate the impact of dimension descriptions and instructions, we tested four ranking tasks derived from two dimension description versions and two instruction versions. Each participant completed the questionnaires twice, enabling intra-group comparisons, including test-retest reliability when using same questionnaire and consistency when using different questionnaires.</p><p><strong>Results: </strong>The phrase \"moderate problems with [dimension]\" yielded more stable rankings than simply using \"problems\", even when the instruction varied. When dimension descriptions differed, the correlation between rankings was lower (rₛ = 0.859) than when instructions varied (rₛ = 0.961). Additionally, when using the same instruction, aggregate test-retest reliability of \"moderate problems\" was higher (rₛ = 0.972) than that of \"problems\" (rₛ = 0.871). The average median of correlation coefficient of \"moderate problems\" (0.81 (0.56~0.89)) was higher than that of \"problems\" (0.70 (0.45~0.79)).</p><p><strong>Conclusion: </strong>This study shows that ranking method is feasible and that the dimension description influences the outcome. When compared to \"problems\" description, the results using \"moderate problems\" description shows higher aggregate stability and individual-level test-retest consistency.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":"35 9","pages":""},"PeriodicalIF":3.4,"publicationDate":"2026-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13428683/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148654199","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Lynne Broderick, Meaghan O'Connor, Elizabeth Brennan, Martha Bayliss
{"title":"\"Reading level is just one component\": best practices for cognitive debriefing patient-reported outcome instruments with pediatric populations.","authors":"Lynne Broderick, Meaghan O'Connor, Elizabeth Brennan, Martha Bayliss","doi":"10.1007/s11136-026-04352-3","DOIUrl":"10.1007/s11136-026-04352-3","url":null,"abstract":"<p><strong>Purpose: </strong>The purpose of this study was to develop best practices for conducting cognitive debriefing interviews with pediatric populations by drawing on the currently available literature and insights from experts in the health-related quality of life research community.</p><p><strong>Methods: </strong>A scoping review of the literature was conducted to identify existing recommendations, considerations, and methods for conducting cognitive debriefing interviews with pediatric populations. Findings from the review informed the development of a draft set of best practices, which were subsequently reviewed and refined through a two‑round modified Delphi process. The Delphi panel was composed of experts (i.e., researchers) in patient-reported outcome instrument development and evaluation with experience conducting interviews with pediatric populations.</p><p><strong>Results: </strong>Thirty-five articles or guidance documents were included in the final scoping review, contributing insights that were used to develop a draft set of 17 best practices. Following the two rounds of review by the Delphi panel, the final set of 17 best practices, which reflects panel consensus, addresses: developing the interview guide, evaluating the characteristics of the instrument to be debriefed, and interview conduct.</p><p><strong>Conclusion: </strong>The best practices described in this article provide evidence‑based guidance that can help to standardize and strengthen the rigor of cognitive debriefing interviews with pediatric populations while potentially also improving the experience for participants. Broader implementation across drug development programs may enhance the reliability of measurement, improve the quality of pediatric participant input, and promote more patient‑centered decision‑making.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":"35 9","pages":""},"PeriodicalIF":3.4,"publicationDate":"2026-07-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13423988/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148621279","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Tianxin Pan, Nan Luo, Zhuxin Mao, Xin Hong, Chao Li, Jie Wu, Nancy Devlin
{"title":"Challenges with interviewer administration of EQ-5D questionnaires in a large-scale population survey in China: a qualitative analysis.","authors":"Tianxin Pan, Nan Luo, Zhuxin Mao, Xin Hong, Chao Li, Jie Wu, Nancy Devlin","doi":"10.1007/s11136-026-04351-4","DOIUrl":"10.1007/s11136-026-04351-4","url":null,"abstract":"<p><strong>Introduction: </strong>While most adult measures of health-related quality of life (HRQoL) are designed for self-completion, their use in low- and middle-income countries involves interviewer administration. Large-scale population surveys in China that collect EQ-5D data via face-to-face interviews typically show high ceiling effects. We aimed to identify non-standard interviewing approaches in the collection of EQ-5D data in a large-scale population health survey in China and to explore reasons for these non-standard approaches and plausible mechanisms through which these deviations may influence EQ-5D response patterns.</p><p><strong>Methods: </strong>A random sample of routinely recorded interviews from population health surveys in Nanjing, China were thematically analysed to identify interviewing approaches to collecting EQ-5D-3L. Focus group discussions with ten interviewers were used to explore the reasons for those approaches.</p><p><strong>Results: </strong>Six non-standard interviewing approaches were identified: skipping questions; altering question wording; combining multiple dimensions into one question; altering response options; selecting responses based on interviewer interpretation of respondent's narrative; and not asking the interviewee any questions. Three main reasons motivated these non-standard approaches: (a) comprehension and response challenges among low-literacy respondents; (b) survey structure, including overall length, positioning of EQ-5D questions and respondent burden leading to time-saving interview strategies; (c) limited interviewer knowledge of self-reported health measures, including a tendency to view EQ-5D as an observer-assessed instrument.</p><p><strong>Conclusion: </strong>Our findings highlight challenges in interviewer administration of the EQ-5D in large-scale population surveys. The non-standard approaches observed may affect data quality, potentially contribute to ceiling effects, and complicate the interpretation of these data being 'self-reported'. Providing training on EQ-5D data collection to interviewers may be a first step to strengthening data collection processes.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":"35 9","pages":""},"PeriodicalIF":3.4,"publicationDate":"2026-07-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13424218/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148621263","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Jessie T Lu, David K E Chan, Grace X Li, Sophy T F Shih, Deshan F Sebaratnam
{"title":"Dermatology patient-derived health utility of facial angiofibroma associated with tuberous sclerosis complex.","authors":"Jessie T Lu, David K E Chan, Grace X Li, Sophy T F Shih, Deshan F Sebaratnam","doi":"10.1007/s11136-026-04362-1","DOIUrl":"10.1007/s11136-026-04362-1","url":null,"abstract":"<p><strong>Purpose: </strong>The majority of patients with Tuberous Sclerosis Complex have cutaneous manifestations, the most common being facial angiofibroma (FA). The impact of facial angiofibroma on quality of life has not been comprehensively evaluated, and a health state utility has not previously been determined. The purpose of this study was to calculate the health utility of facial angiofibroma from the perspective of dermatology patients and explore any associations between participants' sociodemographic characteristics and the perceived utility of facial angiofibroma.</p><p><strong>Methods: </strong>In a structured interview format, participants recruited from dermatology clinics (n = 100) were asked to imagine themselves in each of four health states (monocular blindness, binocular blindness, almost-clear facial angiofibroma and moderate facial angiofibroma). Visual analogue scale, time trade-off and standard gamble were conducted for each health state and each outcome was converted into a health state utility.</p><p><strong>Results: </strong>The adjusted mean health state utilities were 0.88 [0.84,0.92], 0.95 [0.91,0.99] and 0.94 [0.91,0.98] for almost-clear facial angiofibroma, by Visual Analogue Scale, Time Trade-Off and Standard Gamble, respectively, and 0.68 [0.64,0.72], 0.88 [0.84,0.92] and 0.91 [0.87,0.94] for moderate facial angiofibroma. Participants theoretically elected to sacrifice 6.8 years of their remaining 57 years of life (12%) and accept a 9% risk of immediate death to receive curative treatment for moderate facial angiofibroma.</p><p><strong>Conclusion: </strong>The health state utility of moderate facial angiofibroma was significantly poorer than almost-clear facial angiofibroma. This highlights that reducing the severity of facial angiofibroma can deliver potential gains in quality of life.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":"35 9","pages":""},"PeriodicalIF":3.4,"publicationDate":"2026-07-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13424800/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148631381","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Georga Sallows, Patrick Sharpe, Pip Henderson, Lavender Otieno, Daniel Y Ellis, Nicole Kelly, Mahni Foster, Belinda Gabbe, Mark Fitzgerald, Julieann Coombes, Luke Wolfenden, Brett Shannon, Gerard O'Reilly, Murthy Mittinty, Kate Hunter, Shanti Omodei-James, Hossein Haji Ali Afzali, Maree Toombs, Courtney Ryder
{"title":"Equity, evidence and indigenous knowledges in PROMs in Australian injury research: a systematic review.","authors":"Georga Sallows, Patrick Sharpe, Pip Henderson, Lavender Otieno, Daniel Y Ellis, Nicole Kelly, Mahni Foster, Belinda Gabbe, Mark Fitzgerald, Julieann Coombes, Luke Wolfenden, Brett Shannon, Gerard O'Reilly, Murthy Mittinty, Kate Hunter, Shanti Omodei-James, Hossein Haji Ali Afzali, Maree Toombs, Courtney Ryder","doi":"10.1007/s11136-026-04353-2","DOIUrl":"10.1007/s11136-026-04353-2","url":null,"abstract":"<p><strong>Purpose: </strong>Patient-reported outcome measures (PROMs) are widely used in trauma and injury research to assess health-related quality of life (HRQoL), mental health and functional recovery. However, PROMs are rarely adapted to reflect the lived experiences, cultural values and determinants of health for priority populations, particularly Aboriginal and Torres Strait Islander peoples, who experience a disproportionate burden of injury in Australia. This systematic review addressed the inclusion of health equity indicators and Indigenous knowledges for PROMs used in observational Australian trauma and injury studies for adults (≥ 18 years).</p><p><strong>Methods: </strong>A systematic search of Medline (OVID), CINAHL (EBSCO) and Scopus was performed including prospective cohort or longitudinal designs, focused on trauma-related injuries conducted in Australia. Data were extracted and appraised using the CREATE and PROGRESS-PLUS tools to assess Indigenous engagement and equity-sensitive reporting.</p><p><strong>Results: </strong>Across the 11 included studies, 17 different PROMs were used with SF-36 and PCL-C being the most common. Physical and mental health outcomes were consistently impaired post-injury, with long-term impacts. Equity considerations were largely absent; none of the studies met all PROGRESS-PLUS criteria and Indigenous knowledges were not incorporated. Priority populations, including Aboriginal and Torres Strait Islander peoples, culturally and linguistically diverse (CALD) communities, people with disabilities and women, were frequently underrepresented or excluded.</p><p><strong>Conclusion: </strong>These findings highlight significant gaps in equity-sensitive PROM use and the urgent need for culturally safe and inclusive PROM development that reflects diverse recovery experiences thereby supporting equitable trauma care and follow-up.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":"35 9","pages":""},"PeriodicalIF":3.4,"publicationDate":"2026-07-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13424147/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148621319","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Humanistic and economic burden among caregivers of adults and children with transfusion dependent β-thalassemia: a mixed-methods study.","authors":"Lauren Lilly, Duncan Brown, Nanxin Li, Jennifer Drahos, Melanie Calvert, Laurice Levine, Neelam Dongha, Zahra Pakbaz, Farrukh Shah, Ashley Valentine, Bethany Franks, Idaira Rodriguez Santana","doi":"10.1007/s11136-026-04341-6","DOIUrl":"10.1007/s11136-026-04341-6","url":null,"abstract":"<p><strong>Purpose: </strong>To describe the humanistic and economic burden among informal caregivers of individuals with transfusion-dependent β-thalassemia (TDT) across the US and Europe.</p><p><strong>Methods: </strong>A mixed-methods study was conducted with qualitative interviews in the US and UK and an online survey in the US, UK, France, Italy, and the Netherlands. The survey included CarerQoL-7D, ZBI-12, and WPAI: CG and captured time spent providing informal care and out-of-pocket (OOP) expenses. Interviews were analyzed using the Framework Method, and survey data with descriptive analyses. Monetary values were standardized to US dollars (2025 USD).</p><p><strong>Results: </strong>Interviews with 10 caregivers revealed five key themes: (1) Need for a strong support network; (2) Burden of disease management and constant care; (3) Barriers and facilitators to optimal care; (4) Impact on caregivers' daily life, work, and aspirations; and (5) Emotional distress and impacts on well-being. Seventy caregivers completed the survey. The CarerQoL-7D indicated adverse impacts on quality of life (QoL), with > 60% reporting mental health, daily activity, and physical health problems. On average, US and European caregivers spent 34.7 and 40.5 h per week performing caregiving activities, respectively. WPAI: CG results indicated overall work impairment of 33 and 43% among US and European caregivers, respectively. Average annual OOP expenses were $6000 in the US and $3348 in Europe.</p><p><strong>Conclusion: </strong>Caregivers of people with TDT experience negative impacts on QoL and work productivity. There is a need for healthcare policies to address caregiver's distinct challenges. Improving access to emerging therapies may ease caregiver and patient burden.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":"35 9","pages":""},"PeriodicalIF":3.4,"publicationDate":"2026-07-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148593205","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Aminath Shiwaza Moosa, Ngiap Chuan Tan, Ruiting Chen, Ding Xuan Ng, Karen Jui Lin Choo, Yong Kwang Tay, Nan Luo
{"title":"Development and psychometric evaluation of a new itch assessment questionnaire for use in multi-ethnic Asian population.","authors":"Aminath Shiwaza Moosa, Ngiap Chuan Tan, Ruiting Chen, Ding Xuan Ng, Karen Jui Lin Choo, Yong Kwang Tay, Nan Luo","doi":"10.1007/s11136-026-04342-5","DOIUrl":"10.1007/s11136-026-04342-5","url":null,"abstract":"<p><strong>Purpose: </strong>The study aimed to develop and evaluate an itch assessment questionnaire (IAQ) to determine and monitor itch severity and its impact on quality of life (QOL) in a multi-ethnic Asian population. It addresses limitations of existing tools, which assess only narrow aspects of itch and require multiple instruments for a comprehensive evaluation of itch and its impact on patients' QOL. No single, validated multidimensional questionnaire currently reflects the cultural and ethnic diversity of Asian populations.</p><p><strong>Methods: </strong>An exploratory, sequential, mixed-methods study was conducted in two phases in a primary care setting in Singapore. Phase one used literature review, preliminary qualitative study findings, expert discussions and qualitative interviews with 13 patients and 10 primary care physicians to develop a draft IAQ. In phase two, 250 participants (with and without itch) completed the draft IAQ, 5-D pruritus scale, and Dermatology Life Quality Index (DLQI) over three points, 4-10 days apart. Data was analysed to assess IAQ's validity and reliability.</p><p><strong>Results: </strong>The final IAQ comprised 10 questions across three parts: itch severity, impact on QOL, and itch management. The IAQ demonstrated a strong correlation with the 5-D pruritus scale (ρ = 0.67, p < 0.001) and DLQI (ρ = 0.77, p < 0.001). The overall intraclass correlation coefficient and Cronbach α were 0.93 (95% CI = 0.91 to 0.95) and 0.94 (95% CI = 0.93 - 0.95), respectively.</p><p><strong>Conclusions: </strong>IAQ demonstrated construct validity and excellent reliability, suggesting its suitability for assessing itch severity and impact on QOL in multi-ethnic Asian populations.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":"35 9","pages":""},"PeriodicalIF":3.4,"publicationDate":"2026-07-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13402263/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148593191","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}