Health and Quality of Life Outcomes最新文献

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

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

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

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

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

{"title":"Psychometric properties of the Arabic versions of the perceived social competence scale and the prosociality scale.","authors":"Sarah Gerges, Vanessa Azzi, Zeinab Bitar, Mariam Dabbous, Sahar Obeid, Feten Fekih-Romdhane, Souheil Hallit","doi":"10.1186/s12955-025-02341-7","DOIUrl":"10.1186/s12955-025-02341-7","url":null,"abstract":"<p><strong>Background: </strong>Prosocial behaviors refer to a variety of voluntary actions intended to benefit others and the society. They have consistently proven their capacity to promote individuals' well-being and personal development. Nevertheless, these constructs remain largely underexplored in the Arab world. Providing validated measures of prosocial behaviors in the Arabic language for the Lebanese population could direct research attention towards assessing these behaviors and their promoting factors, thereby enhancing positive psychology. In this regard, we aimed to psychometrically validate the Standard Arabic-translated versions of the Perceived Social Competence scale (PSCS) and Prosociality Scale (PS) among a sample of Lebanese adults.</p><p><strong>Methods: </strong>A total of 403 Lebanese adults (27% men and 73% women) completed an online questionnaire containing the PSCS and PS, as well as the Buss-Perry aggression questionnaire-short form, the Jong-Gierveld loneliness scale, and the depression anxiety stress scale.</p><p><strong>Results: </strong>Both of the PSCS and PS yielded a unidimensional factor structure and demonstrated high levels of composite reliability, with McDonald ω values of 0.83 and 0.95, respectively. The analysis also supported configural, metric, and scalar invariance across gender for the two scales. Convergent validity was evidenced by a high correlation between the PSCS and PS, both measuring prosocial behaviors. In addition, weak and/or non-significant relations between prosocial behaviors and non-theoretically relevant variables (i.e., aggression, loneliness, and psychological distress) provided evidence for the divergent validity of both scales.</p><p><strong>Conclusion: </strong>Our study cautiously suggested that the Standard Arabic versions of the PSCS and PS are psychometrically valid for measuring prosocial behaviors. This study should prompt further research in the field of social competence/prosocial behaviors for the sake of promoting positive psychological interventions in Lebanon. Future research should prioritize the inclusion of more diverse samples, encompassing a wider range of sociodemographic characteristics, in order to enhance the generalizability of these findings to the broader Lebanese population.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"23 1","pages":"16"},"PeriodicalIF":3.2,"publicationDate":"2025-02-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11846321/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143476039","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Development of updated population norms for the SF-36 for Hungary and comparison with 1997-1998 norms.","authors":"Alex Bató, Valentin Brodszky, Fanni Rencz","doi":"10.1186/s12955-025-02343-5","DOIUrl":"10.1186/s12955-025-02343-5","url":null,"abstract":"<p><strong>Background: </strong>Hungarian SF-36 population norm data were last collected in 1997-1998 and have not been updated since, reducing their relevance and limiting their usability and comparability. This study aimed to establish contemporary normative data for the SF-36 domain and standardised summary scores in Hungary and compare them to the previous population norms.</p><p><strong>Methods: </strong>An online cross-sectional survey, including the SF-36v1, was conducted among 1,700 members of the Hungarian adult general population in 2020. The sample demonstrated good representativeness across key sociodemographic characteristics. Normative data were calculated for domains using raw scores and for summary scores using country-specific factor score coefficients derived from exploratory factor analysis. Multivariate linear regression models were performed to examine the association of domain and summary scores with sociodemographic and health-related characteristics. Raw domain scores were compared with the 1997-1998 norms.</p><p><strong>Results: </strong>Males reported higher scores (better health) in seven out of eight domains (p < 0.001). Mean standardised PCS scores decreased, whereas MCS scores increased with age (p < 0.001). Compared to the 1997-1998 population norms, the 18-24 and 25-34 age groups reported lower, while the 65 + age group reported higher scores in all eight domains. Higher scores were reported in 2020 from the 35-44 age group onward on the role physical, bodily pain, social functioning, and role emotional domains.</p><p><strong>Conclusions: </strong>This study established contemporary population norms for the SF-36 in Hungary. Our results highlight the changes in health status in the general population, particularly in young adults, compared to the 1997-1998 population norms, and provide valuable input to inform decision-makers.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"23 1","pages":"14"},"PeriodicalIF":3.2,"publicationDate":"2025-02-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11831779/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143440711","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":"Personality traits and quality of life: a cross-sectional study in a middle-aged Iranian general population.","authors":"Danial Habibi, Roqayeh Parsaei, Hamidreza Roohafza, Awat Feizi","doi":"10.1186/s12955-025-02344-4","DOIUrl":"10.1186/s12955-025-02344-4","url":null,"abstract":"<p><strong>Introduction: </strong>Despite considerable research on the association between Personality Traits (PT) and Quality of Life (QoL) in patients and older adults, this association remains poorly understood among the middle-aged general population.This investigation examines how each PT is associated with total QoL and its dimensions.</p><p><strong>Methods: </strong>The present investigation utilized data collected from a cross-sectional survey involving 786 families in Isfahan (644 female/wife respondents), Iran. QoL and PT were assessed using the validated WHOQOL-BREF and NEO-FFI questionnaires. Other data including demographic and socioeconomic status (SES) were also collected. Statistical analyses included bivariate correlation and simple and multiple linear and logistic regressions.</p><p><strong>Results: </strong>Mean value of Psychological health [Mean difference = -4.34, P = 0.003], Physical health [mean difference = -3.93, P = 0.004], and total score of QoL [mean difference = -3.21, P = 0.049] were all significantly lower in women than men. Higher SES score was consistently associated with greater QoL scores (r > 0, P < 0.05). The physical domain and total QoL scores have been negatively correlated with the spouse's age (r < 0, P < 0.05). In crude and adjusted models, higher Neuroticism scores were inversly associated with higher scores of all QoL domains and total QoL (OR < 1, P < 0.05, for all models) while others personality traits except Openness showed a direct association (OR > 1, P < 0.05). Linear regression analysis also confirmed that higher Neuroticism scores were linked to poorer QoL scores (Beta_coefficient < 0, P < 0.05), while all other traits, except Openness, showed a positive association (Beta_coefficient > 0, P < 0.05).</p><p><strong>Conclusion: </strong>This study provides robust evidence about the significant association of PT with QoL outcomes in middle aged people. This significant association highlights the importance of considering these traits in clinical applications, as tailored interventions based on personality profiles can effectively enhance the well-being of middle-aged individuals.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"23 1","pages":"13"},"PeriodicalIF":3.2,"publicationDate":"2025-02-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11831848/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143440717","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":"Evaluating the implementation of PROMs and PREMs in routine clinical care: co-design of tools from the perspective of patients and healthcare professionals.","authors":"Clara Amat-Fernandez, Yolanda Pardo, Montse Ferrer, Guillermo Bosch, Catalina Lizano-Barrantes, Renata Briseño-Diaz, Maria Vernet-Tomas, Lluís Fumadó, Marc Beisani, Dolores Redondo-Pachón, Anna Bach-Pascual, Olatz Garin","doi":"10.1186/s12955-025-02333-7","DOIUrl":"10.1186/s12955-025-02333-7","url":null,"abstract":"<p><strong>Background: </strong>Implementation of patient-reported measures (PRMs) is an integral element for patient-centered models; however, there is still hardly any quantitative evidence regarding its impact in routine care settings. The objective of this study was to codesign two concise tools that allow for a standardized and longitudinal assessment of the implementation of PRMs in routine care in terms of acceptability and perceived value from the perspective of both patients and healthcare professionals.</p><p><strong>Methods: </strong>A list of constructs and items to be presented, separately, to patients and healthcare professionals was created from evidence gathered through a narrative literature review. Focus groups, composed of either patients or healthcare professionals from different chronic conditions, were conducted for the co-design of independent assessments. Once agreement was reached, the content validity was examined in separate consensus meetings.</p><p><strong>Results: </strong>A total of 10 patients and 10 healthcare professionals participated in the focus groups. After 7 focus groups, the PRMs Implementation Assessment Tool for patients (PRMIAT-P) was developed with 33 items in 9 constructs, and the tool for healthcare professionals (PRMIAT-HP) had 33 items in 16 constructs. Content validity was confirmed for both tools.</p><p><strong>Conclusions: </strong>The perspective of patients and healthcare professionals regarding the implementation of PRMs in routine care can be evaluated quantitively with the PRMIAT tools. These tools are understandable, concise and comprehensive, and can be used in multiple settings and for different chronic conditions. They have been codesigned as a standard set to facilitate both longitudinal assessments and performing benchmarking among different initiatives.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"23 1","pages":"15"},"PeriodicalIF":3.2,"publicationDate":"2025-02-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11834580/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143440714","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 COSMIN systematic review of instruments for evaluating health-related quality of life in people with Hereditary Angioedema.","authors":"Irene Baroni, Giulia Paglione, Giada De Angeli, Miriam Angolani, Edward Callus, Arianna Magon, Gianluca Conte, Stefano Terzoni, Maura Lusignani, Rosario Caruso, Andrea Zanichelli","doi":"10.1186/s12955-025-02342-6","DOIUrl":"10.1186/s12955-025-02342-6","url":null,"abstract":"<p><strong>Background: </strong>Hereditary angioedema (HAE) adversely affects health-related quality of life (HRQoL). HAE often compromises the HRQoL due to the impact on functional capacity caused by edema, pain, other symptoms, and psychosocial factors. Patient-Reported Outcome Measures (PROMs) focus on HRQoL and are crucial tools for evaluating the burden of the disease and choosing the most appropriate interventions for this population. However, no comprehensive evaluations of the characteristics of the available measurements to assess HRQoL have been conducted for this population.</p><p><strong>Aim: </strong>To identify, analyze, and summarize the PROMs assessing HRQoL in individuals with HAE-C1-INH, addressing the gap in standardized assessment tools.</p><p><strong>Methods: </strong>A systematic review was conducted up to December 2023 in PubMed, Scopus, Web of Science, Embase, and CINAHL databases, following PRISMA guidelines without language or time restrictions. Psychometric properties of the identified PROMs were appraised using COSMIN standards, and evidence was synthesized using a modified GRADE approach.</p><p><strong>Results: </strong>From seven studies, five HRQoL PROMs were identified: two generic (SF-36 and SF-36v2) and three disease-specific (HAE-QoL, HAEA-QoL, and AE-QoL). These PROMs generally lacked comprehensive content, structural and cross-cultural validation, with none meeting the criteria for measurement invariance. This limitation affects their applicability across different demographics and cultures. However, the HAE-QoL and AE-QoL instruments were recognized for having moderate quality evidence, suggesting their potential reliability and validity.</p><p><strong>Conclusions: </strong>This systematic review provides a moderate recommendation for the use of HAE-QoL and AE-QoL in assessing HRQoL in adults with HAE. Despite identified gaps, the moderate evidence quality for these tools supports their use, pending further validation, involving younger age groups and disease-specific contents in the assessments. Developing culturally and demographically adaptable PROMs is, therefore, a priority to improve the accuracy of PROMs in this field.</p><p><strong>Review registration number: </strong>PROSPERO registration number is CRD42023440137.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"23 1","pages":"12"},"PeriodicalIF":3.4,"publicationDate":"2025-02-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11823193/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143414050","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}