Anna Panzeri, Marta Ghisi, Alessandro Alberto Rossi, Andrea Spoto, Giulio Vidotto, Gioia Bottesi
{"title":"The Uncertainty in Illness Questionnaire (UIQ): development and validation of a clinically oriented measure for patients and caregivers.","authors":"Anna Panzeri, Marta Ghisi, Alessandro Alberto Rossi, Andrea Spoto, Giulio Vidotto, Gioia Bottesi","doi":"10.1186/s12955-026-02515-x","DOIUrl":"10.1186/s12955-026-02515-x","url":null,"abstract":"<p><strong>Objective: </strong>The present research aimed to develop and validate the Uncertainty in Illness Questionnaire (UIQ), a self-report tool designed to assess uncertainty in illness (UI) among Italian-speaking patients and caregivers. Across three studies, the psychometric properties of the UIQ were rigorously evaluated in large, diverse samples.</p><p><strong>Methods & results: </strong>In Study 1, the novel exploratory graph analysis (EGA) revealed a robust four-factor structure - uncertainty about symptoms, treatments, future change, and relationships (optimal stability > .90, negligible cross-loadings). Such structure was then confirmed in Study 2, in an independent sample, through confirmatory factor analysis (CFA) with a hierarchical model with four first-order factors showing good fit (robust RMSEA = 0.065[90% CI: 0.056-0.075]; robust CFI=0.958; robust TLI=0.949; SRMR=0.043). UIQ demonstrated strong reliability, internal consistency, and both convergent and divergent validity. Measurement invariance analyses reached latent means invariance, revealing that UIQ is interpreted equivalently by patients and caregivers, supporting meaningful group comparisons. Following recent methodological guidelines, Study 3 demonstrated the discriminant validity of the UIQ with the Intolerance of Uncertainty Scale-Revised, measuring dispositional intolerance of uncertainty.</p><p><strong>Conclusions: </strong>The tool's brevity and clarity make it suitable for both clinical and research settings, especially where respondent burden must be minimized. The UIQ addresses an important gap in the Italian context, providing a validated, context-specific measure of UI. Convenience sampling, predominantly female participants (> 85%), cross-sectional design, and lack of clinical subgroup analyses limit generalizability. The tool requires cross-cultural validation beyond Italian-speaking populations. UIQ offers clinicians and researchers a reliable means to assess and address UI, ultimately supporting tailored interventions to improve psychological health in medical contexts.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":" ","pages":""},"PeriodicalIF":3.9,"publicationDate":"2026-05-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13393619/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148005267","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}
Zhihao Yang, Juan M Ramos-Goñi, Paul Kind, Jan Busschbach
{"title":"An exploratory analysis of interaction effects in EQ-5D valuation using saturated EQ VAS datasets from the Netherlands, the United Kingdom, and China.","authors":"Zhihao Yang, Juan M Ramos-Goñi, Paul Kind, Jan Busschbach","doi":"10.1186/s12955-026-02548-2","DOIUrl":"10.1186/s12955-026-02548-2","url":null,"abstract":"<p><strong>Objectives: </strong>To examine whether interaction terms improve predictive accuracy in EQ-5D valuation models using fully saturated datasets, and to identify parsimonious interaction specifications that balance model performance and feasibility.</p><p><strong>Methods: </strong>A secondary analysis of three saturated EQ-5D visual analogue scale (VAS) datasets was conducted: EQ-5D-3 L from the Netherlands and the United Kingdom, and EQ-5D-5 L from China. The analysis followed three steps. First, main-effects models were estimated as a reference and compared with models including all second-order interaction terms. Second, the contribution of interaction terms was assessed by examining how model performance metrics (RMSE, R², AIC, and BIC) changed with the number of interaction terms included, and by ranking individual interaction terms according to their impact on RMSE across datasets. Third, parsimonious models using summary interaction terms were evaluated to capture key non-additive effects.</p><p><strong>Results: </strong>Including interaction terms consistently improved predictive performance across all three datasets, although absolute improvements were modest. Interaction effects were strongest for combinations of severe health problems, and all interaction coefficients were positive, consistent with diminishing marginal utility. Interactions involving pain/discomfort and anxiety/depression were among the most influential across datasets. Parsimonious specifications incorporating summary interaction terms-N3D1 for EQ-5D-3 L and N45D1 for EQ-5D-5 L-captured much of the performance gain achieved by fully interacted models.</p><p><strong>Conclusions: </strong>Interaction effects are empirically detectable and systematically improve model performance in EQ-5D valuation when saturated data are available. Summary interaction terms provide a practical approach to capturing key non-additive effects while maintaining model parsimony.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":" ","pages":""},"PeriodicalIF":3.9,"publicationDate":"2026-05-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13374271/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147987151","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":"Latent profile analysis identifying symptom clusters of fatigue, sleep disturbance, pain, and anxiety and their associations with health-related quality of life and self-efficacy in patients undergoing peritoneal dialysis: a cross-sectional study.","authors":"Yiting Zeng, Dandan Zhang, Yuzhen Fang, Mingyi Xiao, Chaona Ji, Xisui Chen","doi":"10.1186/s12955-026-02547-3","DOIUrl":"10.1186/s12955-026-02547-3","url":null,"abstract":"<p><strong>Background: </strong>Peritoneal dialysis patients experience a high burden of co-occurring symptoms that impair health-related quality of life and self-efficacy. This study applied latent profile analysis to identify distinct symptom profiles of fatigue, sleep disturbance, pain, and anxiety and to examine factors associated with profile membership and their associations with patient-reported outcomes.</p><p><strong>Methods: </strong>In this cross-sectional study conducted from January to October 2025, 308 peritoneal dialysis patients from a tertiary hospital in Shantou, China, completed the Multidimensional Fatigue Inventory-20, Athens Insomnia Scale, Numerical Rating Scale, Zung Self-Rating Anxiety Scale, 36-Item Short Form Health Survey, and Chronic Disease Self-Efficacy Scale. Latent profile analysis was performed using Mplus 8.3. Factors associated with profile membership were examined using exploratory three-step analyses (R3STEP), and differences in health-related quality of life and self-efficacy across profiles were compared using the BCH approach.</p><p><strong>Results: </strong>Three profiles were identified: Low symptom distress (n = 182, 59.1%), Moderate symptom distress (n = 57, 18.5%), and High symptom distress (n = 69, 22.4%). In exploratory R3STEP analyses accounting for classification uncertainty, higher phosphorus was associated with greater odds of membership in the moderate and high symptom distress profiles relative to the low symptom distress profile, while BMI showed a borderline association. BCH analyses further showed significant differences across profiles in physical and mental health-related quality of life and self-efficacy, with the high symptom distress profile showing the poorest outcomes.</p><p><strong>Conclusions: </strong>Three clinically meaningful symptom profiles exist among peritoneal dialysis patients. Higher symptom distress was associated with poorer health-related quality of life and lower self-efficacy, and exploratory three-step analyses suggested that phosphorus may be an exploratory correlate of membership in the moderate and high symptom distress profiles. These findings suggest that symptom cluster-based screening may help identify peritoneal dialysis patients with greater supportive care needs and may inform future multidisciplinary management strategies.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":" ","pages":""},"PeriodicalIF":3.9,"publicationDate":"2026-05-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13471598/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147987243","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":"Health-related quality of life inequity and influencing factors among urban and rural elderly hypertensive populations: baseline survey of the Northern China Lifestyle Medicine Cohort.","authors":"Huining Li, Yudong Miao, Zhanlei Shen, Dongfang Zhu, Jingbao Zhang, Yuxin Sun, Fang Zhou, Jiajia Zhang, Lihua Ma, Baoyong Hua","doi":"10.1186/s12955-026-02552-6","DOIUrl":"10.1186/s12955-026-02552-6","url":null,"abstract":"<p><strong>Background: </strong>There is a lack of broader, systematic research examining differences in health-related quality of life (HRQoL) among elderly hypertensive populations across urban and rural settings. This study evaluates these disparities and identifies key influencing factors among urban and rural settings.</p><p><strong>Methods: </strong>Data were extracted from the Northern China Lifestyle Medicine Cohort (NCLM-Cohort.</p><p><strong>Registration number: </strong>ChiCTR2500096200; Registration date:2025/01/20) study, which covers four Provinces. Tobit regression and logistic regression analyses were used to assess the relationships between variables and Health Utility Value (HUV), Visual Analogue Scale (VAS) scores, and reported EQ-5D-5L (5L) issues reported in urban and rural participants. The Shapley value decomposition method, which is based on logistic regression analysis, was employed to quantify the weights of each influencing factor. Propensity score matching (PSM) was used to minimize potential confounding bias.</p><p><strong>Results: </strong>A total of 7,062 participants (21.24% urban and 58.16% female) were included. The urban HUV (median 1.000) was greater than the rural HUV (median 0.942), and reported fewer health issues. After PSM, there were net differences in urban-rural HUV (0.009) and reported self-care (7.63%), usual activities (3.37%), and pain/discomfort issues (11.57%). Physical activity was the protective factor for HRQoL and contributed most significantly to decline reporting 5L issues. Medication adherence and the duration of hypertension had conflicting effects on urban-rural HRQoL. Urban HRQoL was driven primarily by clinical and health factors and educational factors, whereas rural HRQoL was influenced predominantly by modifiable health behaviors and economic factors.</p><p><strong>Conclusions: </strong>Compared with rural counterparts, urban participants demonstrated superior HRQoL and fewer health issues, indicating a significant urban-rural health disparity. To address this gap, policymakers should implement differentiated intervention strategies: Urban interventions should integrate mental health services into primary care and strengthen hypertension-related health literacy. For rural populations, policies must prioritize infrastructure development and economic subsidies, and healthcare providers should support them in maintaining adequate sleep and good medication adherence.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":" ","pages":""},"PeriodicalIF":3.9,"publicationDate":"2026-05-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13352706/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147972042","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}
Sarah E Hughes, Catherine M Sucher, Emma Laird, Melanie A Ferguson
{"title":"Living with Cochlear Implants (LivCI): development and validation of a new patient-reported outcome measure (PROM) of personal factors associated with living with cochlear implants.","authors":"Sarah E Hughes, Catherine M Sucher, Emma Laird, Melanie A Ferguson","doi":"10.1186/s12955-026-02541-9","DOIUrl":"10.1186/s12955-026-02541-9","url":null,"abstract":"<p><strong>Background: </strong>There is a paucity of research that considers personal factors that have recently been shown to be important to those who use cochlear implants (CI). This study aimed to develop the Living with Cochlear Implants (LivCI) questionnaire, a patient-reported outcome measure (PROM) of personal factors important to living with cochlear implants, and evaluate its psychometric properties using Rasch and classical test theory (CTT) analyses.</p><p><strong>Methods: </strong>Multi-phase, prospective observational design. CI candidates and recipients (n = 267) completed a 54-item draft LivCI. The item pool was assessed for Rasch model fit, including overall scale and item fit, local dependency, rating scale functioning, differential item functioning (DIF), reliability and unidimensionality. Results guided iterative refinements to produce a definitive LivCI. LivCI scales were evaluated in a second sample (n = 145) using CTT for internal consistency reliability (Cronbach's alpha) and criterion and construct validity. A hypothesis testing approach, comparing LivCI scores with participants' scores on five comparator PROMs, was used.</p><p><strong>Results: </strong>We constructed a 22-item version of the LivCI comprising four unidimensional subscales: (1) function and participation; 2) psychosocial and wellbeing; 3) stigma; and 4) device aesthetics and management. Scales represented domains of a co-developed conceptual framework. All met the Rasch model requirements of fit, unidimensionality, local item independence and item invariance for age and gender (DIF), except the Device Aesthetics and Management scale with one dependent item pair. A 4-point response category structure was adopted to address threshold disordering. Person separation reliability (range = 0.57 to 0.85) and internal consistency reliability (Cronbach's [Formula: see text] = 0.64 to 0.94) were acceptable with exception of the Device Aesthetics and Management Scale. The LivCI was highly correlated (r > 0.6) with PROMs considered to measure similar constructs, sufficient evidence of criterion validity (Pearson correlation value range = 0.62 to 0.75, 100% of a priori hypotheses met). Construct validity was partially supported with 54% (15/28) of predefined hypotheses confirmed.</p><p><strong>Conclusions: </strong>The 22-item LivCI, comprising four standalone scales, met Rasch model requirements for unidimensionality, invariance, local independence and item fit. With further validation, the LivCI has potential for implementation in routine care and as a research tool. (350 words).</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":" ","pages":""},"PeriodicalIF":3.9,"publicationDate":"2026-05-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13343667/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147941402","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}
Merel Engelaar, Iris van der Heide, Nanne Bos, Willemijn Schäfer, Carina Dantas, Laura Pinnavaia, Giovanni Apolone, Cinzia Brunelli, Augusto Caraceni, Norbert Couespel, Olatz Garin, Mogens Groenvold, Stein Kaasa, Gennaro Ciliberto, Claudio Lombardo, Ricardo Pietrobon, Gabriella Pravettoni, Aude Sirven, Hugo Vachon, Alexandra Gilbert, Jany Rademakers
{"title":"Exploring health system factors related to the quality of life of people with (a history of) cancer: a rapid review.","authors":"Merel Engelaar, Iris van der Heide, Nanne Bos, Willemijn Schäfer, Carina Dantas, Laura Pinnavaia, Giovanni Apolone, Cinzia Brunelli, Augusto Caraceni, Norbert Couespel, Olatz Garin, Mogens Groenvold, Stein Kaasa, Gennaro Ciliberto, Claudio Lombardo, Ricardo Pietrobon, Gabriella Pravettoni, Aude Sirven, Hugo Vachon, Alexandra Gilbert, Jany Rademakers","doi":"10.1186/s12955-026-02545-5","DOIUrl":"10.1186/s12955-026-02545-5","url":null,"abstract":"<p><strong>Background: </strong>Cancer is a leading cause of death in Europe, and it has a major impact on the quality of life of those affected by it. Quality of life is a multifaceted concept affected by a range of factors, namely individual, organisational, and national health system factors. Despite existing research on individual and organisational aspects, little is known about the association between health system factors and quality of life. Therefore, the aim of this study is to explore the health system factors that relate to the quality of life of people with (a history of) cancer and to identify potential gaps in literature.</p><p><strong>Methods: </strong>We conducted a rapid review to gain insight into what is known in scientific literature regarding health system factors that are related to the quality of life of people with (a history of) cancer. We complemented our findings with a broad search in various grey literature databases.</p><p><strong>Results: </strong>The rapid review included 31 studies, which were supplemented by six health policy reports and one book chapter. Based on the review of scientific and grey literature, we constructed a list of ten health system factors that may relate to the quality of life of people with (a history of) cancer.</p><p><strong>Conclusions: </strong>We compiled a list of ten health system factors that may relate to the quality of life of people with (a history of) cancer. Seven factors were identified from and described in scientific literature. Three factors, namely 'policy and vision', 'research and innovation', and 'quality of care delivery', were identified in grey literature. The relation of these health system factors needs to be studied further to better understand what may impact on the quality of life of people with (a history of) cancer.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":" ","pages":""},"PeriodicalIF":3.9,"publicationDate":"2026-05-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13340385/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147928919","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}
Patrick A Flume, Robert J Nordyke, Donald Han, Ashok Jha, Gina Nicholson, John Devin Peipert
{"title":"Patient-reported outcome measures developed for non-cystic fibrosis bronchiectasis may be applied to cystic fibrosis bronchiectasis.","authors":"Patrick A Flume, Robert J Nordyke, Donald Han, Ashok Jha, Gina Nicholson, John Devin Peipert","doi":"10.1186/s12955-026-02546-4","DOIUrl":"10.1186/s12955-026-02546-4","url":null,"abstract":"<p><strong>Background: </strong>Bronchiectasis (BE) is a chronic lung disease that impacts health-related quality of life (HRQoL). BE has historically been separated into cystic fibrosis (CF)-related BE (CFBE) and non-CF-related BE (NCFBE [where NCFBE is etiologically heterogeneous or idiopathic]), despite both sharing similar pathophysiology. Patient-reported outcome measures (PROMs) assessing BE symptoms and impacts on HRQoL have largely been developed and validated in NCFBE. This study assessed whether PROMs developed for NCFBE reflect HRQoL experiences of people with CFBE.</p><p><strong>Methods: </strong>A preliminary conceptual model of symptoms and HRQoL impacts most relevant to people with CFBE was developed based on expert opinion, the content of existing PROMs, and previous qualitative research. Items from 11 existing PROMs were mapped to this preliminary conceptual model. A focus group discussion guide was created from the preliminary conceptual model. US participants aged ≥ 19 years with a self-reported diagnosis of CF and BE were eligible for participation in one of two focus groups (December 2023 or January 2024). Focus groups were recorded and transcribed verbatim, and thematic analysis (ATLAS.ti Web) was used to identify recurring themes from the discussions. Final themes were mapped back to the preliminary conceptual model to identify potential gaps between existing PROMs and relevant HRQoL impacts.</p><p><strong>Results: </strong>A total of 19 people with CFBE participated in the virtual focus groups. Most participants were female (63%) and non-Hispanic White (95%), ranging from 22 to 67 years of age. Focus group discussions revealed five primary themes: Emotional Symptoms, Physical Function, Physical Symptoms, Social Health, and Treatment Burden. A total of 242 unique mentions of BE-related symptoms and impacts on HRQoL were mapped to the model. Generally, concerns about symptoms and HRQoL impacts expressed by participants were consistent with the model. Potential discrepancies included feelings of loss of control, sinusitis, and hemoptysis. Although not included in the model, loss of control likely overlapped with anxiety or treatment burden. Hemoptysis, although raised during focus group discussions, was not captured in the model, but is captured in several PROMs.</p><p><strong>Conclusions: </strong>Measures developed to assess patient‑reported outcomes in NCFBE may be extended to CFBE, pending cognitive and psychometric validation.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":" ","pages":""},"PeriodicalIF":3.9,"publicationDate":"2026-05-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13188592/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147928949","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}
Jiseon Lee, Yeonjung Lim, Youngha Kim, Minji K Lee, Felix Fischer, Matthias Rose, Danbee Kang, Juhee Cho
{"title":"Convergence and divergence between PROMIS<sup>®</sup> global health and EQ-5D-3L in a national population sample.","authors":"Jiseon Lee, Yeonjung Lim, Youngha Kim, Minji K Lee, Felix Fischer, Matthias Rose, Danbee Kang, Juhee Cho","doi":"10.1186/s12955-026-02550-8","DOIUrl":"10.1186/s12955-026-02550-8","url":null,"abstract":"<p><strong>Background: </strong>To compare correlation, agreement, and residual patterns between Patient-Reported Outcomes Measurement Information System (PROMIS) Global Health (GH) and EQ-5D-3 L and to identify areas of convergence and divergence across health domains in a nationally representative Korean population.</p><p><strong>Methods: </strong>A total of 2,699 adults completed PROMIS GH and EQ-5D-3 L between December 2021 and January 2022. A linear regression model was used to predict EQ-5D-3 L index values from PROMIS physical and mental health T-score. Agreement between predicted and observed EQ-5D values was assessed using intraclass correlation coefficients (ICC) and root mean squared error (RMSE). Residuals between observed and predicted EQ-5D values were examined to detect systematic discrepancies across demographic, clinical subgroups, and EQ-5D domain severity levels.</p><p><strong>Results: </strong>The relationship between PROMIS GH and EQ-5D showed consistent agreement (RMSE = 0.079). Approximately 9.8% of participants showed large discrepancies (absolute residual > 0.1) between observed and PROMIS-predicted EQ-5D values. Divergence was most pronounced in those with mobility, self-care, or usual activities problems, and poor PROMIS Physical Health was the strongest predictor of large discrepancies (Odds ratio = 3.68).</p><p><strong>Conclusions: </strong>PROMIS GH and EQ-5D-3 L showed overall agreement but also systematic discrepancies across subgroups. Larger differences were observed in individuals with functional limitations, particularly in mobility, self-care, and usual activities domains. These patterns suggest that the two instruments may capture related but not identical aspects of health.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":" ","pages":""},"PeriodicalIF":3.9,"publicationDate":"2026-05-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13335168/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147928878","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}
Theresa Thölking, Frank Müller, Tim Riester, Viktoria Lampe, Lena-Marie Theil, Eva Hummers, Kousha Sarpari, Alexandra Dopfer-Jablonka, Christine Happle, Sandra Steffens, Mareike Meier-Maiwald, Marie Mikuteit, Dominik Schröder
{"title":"Impact of post-exertional malaise frequency and fatigue in Long COVID patients on health-related quality of life.","authors":"Theresa Thölking, Frank Müller, Tim Riester, Viktoria Lampe, Lena-Marie Theil, Eva Hummers, Kousha Sarpari, Alexandra Dopfer-Jablonka, Christine Happle, Sandra Steffens, Mareike Meier-Maiwald, Marie Mikuteit, Dominik Schröder","doi":"10.1186/s12955-026-02523-x","DOIUrl":"10.1186/s12955-026-02523-x","url":null,"abstract":"<p><strong>Purpose: </strong>The aim of this study was to investigate the impact of post-exertional malaise (PEM) frequency and PEM severity on health-related quality of life (HRQoL) among individuals with Long COVID.</p><p><strong>Methods: </strong>We conducted a cross-sectional online survey including adults in Germany with self-reported Long COVID and PEM. Fatigue severity was assessed with the Fatigue Assessment Scale (FAS), and HRQoL was measured using the EQ-5D-3L (descriptive index and visual analogue scale [EQ-VAS]). Associations between PEM frequency, fatigue, and HRQoL were examined using correlations and non-parametric group comparisons. Multiple linear regression models were fitted to predict HRQoL while controlling for age, sex, employment status, and subjective social status.</p><p><strong>Results: </strong>Higher PEM frequency was associated with significantly lower EQ-5D index scores (ρ = - 0.32, p<.001). PEM severity was also strongly correlated with reduced HRQoL (EQ-5D index: ρ = - 0.43, p<.001). In multivariable regression models, greater fatigue and higher PEM frequency independently predicted poorer HRQoL, even after adjustment for sociodemographic factors.</p><p><strong>Conclusion: </strong>Both PEM frequency and PEM severity substantially impair HRQoL in individuals with Long COVID. These findings underscore the clinical relevance of PEM as a key symptom and highlight the need for targeted management strategies to mitigate its impact on daily life.</p><p><strong>Clinical trial number: </strong>German Clinical Trials Register DRKS00026007; registration date: 9 September 2021.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"24 1","pages":""},"PeriodicalIF":3.9,"publicationDate":"2026-05-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13162394/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147873967","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 evaluation of the Korean version of the Child Oral Health Impact Profile Short Form (COHIP-SF 19): a cross-sectional study.","authors":"Ji-Soo Song","doi":"10.1186/s12955-026-02540-w","DOIUrl":"10.1186/s12955-026-02540-w","url":null,"abstract":"<p><strong>Background: </strong>The Child Oral Health Impact Profile Short Form 19 (COHIP-SF 19) is widely used to assess oral health-related quality of life (OHRQoL). However, its psychometric properties have not been evaluated in Korea. This study aimed to examine the factor structure of the Korean COHIP-SF 19 and to assess its reliability and validity in schoolchildren.</p><p><strong>Methods: </strong>Data were obtained from 980 fourth-grade elementary school students (aged 10 years) participating in a 2023 national oral health program. Children completed the COHIP-SF 19 online, and clinical examinations recorded caries, malocclusion, gingivitis, and oral hygiene status. Exploratory and confirmatory factor analyses were performed. Reliability was assessed using Cronbach's alpha, corrected item-total correlations, and test-retest intraclass correlation coefficients (ICC). Convergent and discriminant validity were evaluated using self-rated oral health, perceived treatment need, and clinical findings.</p><p><strong>Results: </strong>Exploratory factor analysis supported a four-factor solution with separation of the self-image subscale. Confirmatory factor analysis showed better fit for the modified model than the original structure. The total score demonstrated excellent test-retest reliability (ICC = 0.905). Cronbach's alpha for the 19 items was 0.729, with higher values in the modified model. Convergent validity was confirmed by correlations with self-rated oral health and treatment need. Discriminant validity was supported: children with caries or malocclusion had lower scores, whereas gingivitis and oral hygiene showed no associations. Gender differences appeared only in the modified model, with girls reporting lower functional well-being and social well-being scores.</p><p><strong>Conclusions: </strong>The Korean COHIP-SF 19 demonstrated satisfactory psychometric properties in 10-year-old schoolchildren. The modified model showed improved structural validity, higher internal consistency, and better subgroup discrimination, including by gender. These findings support its use in clinical and epidemiological research.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":" ","pages":""},"PeriodicalIF":3.9,"publicationDate":"2026-05-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13326366/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147864013","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}