Tracy C W Tang, Mun Wong, Jian-Bin Li, Derwin K C Chan
{"title":"Development and initial validation of the health-related quality of life pictorial inventory for children (HEALTH-PIC).","authors":"Tracy C W Tang, Mun Wong, Jian-Bin Li, Derwin K C Chan","doi":"10.1007/s11136-025-03988-x","DOIUrl":"https://doi.org/10.1007/s11136-025-03988-x","url":null,"abstract":"<p><strong>Purpose: </strong>This 3-study paper aimed to develop and validate a self-reported Health-Related Quality of Life Pictorial Inventory for Early Childhood Children (HEALTH-PIC). The scale was designed to overcome existing barriers of parent-proxy response styles such as observation bias and offer an alternative to age-suited literary questionnaires to assess self-reported health-related quality of life, including physical health, emotional health, social health and school health in early childhood.</p><p><strong>Methods: </strong>Each study targeted a specific aspect of scale development, employing distinct samples to refine and validate the inventory. Study 1 involved item development/revision, which utilized a panel of 10 experts (Mean<sub>age</sub> = 34.8, SD = 4.9) and 25 parents (Mean<sub>age</sub> = 38.9; SD = 4.1) via the Delphi method to revise the scale and establish agreement. Study 2 is a cross-sectional study that invited a sample of 22 primary school students (Mean<sub>age</sub> = 6.18, SD = 0.39) and 20 kindergarten students (Mean<sub>age</sub> = 4.55, SD = 0.50) to establish face validity amongst primary respondents. Finally, Study 3 is a cross-sectional study that invited 342 parent and child (Mean<sub>age</sub> = 6.30, SD = 1.31) dyads to complete the HEALTH-PIC and reference health-related quality of life (HRQoL) questionnaires to establish the questionnaire's factorial, concurrent, discriminant and criterion validity in addition to internal consistency.</p><p><strong>Results: </strong>Scale items in Study 1 were developed alongside experts and parents with a strong theoretical and statistical support calculated using Aiken's agreement (Aiken's V p < 0.05), ensuring that the items were clear, accurate and applicable for children. In Study 2, we ensured that primary respondents of different ages were able to accurately identify the pictorial images (Aiken's V p < 0.05) and complete the questionnaire when the scripted instructions were read aloud. In Study 3, structural equation modelling of the HEALTH-PIC demonstrated a robust factor structure (CFI and TLI > 0.99; RMSEA and SRMR ≤ 0.08), concurrent validity, discriminant validity, criterion validity and an acceptable level of internal consistency (i.e., Cronbach's α = 0.60-0.66).</p><p><strong>Conclusion: </strong>The findings of the three studies provide preliminary evidence to support the content validity and construct validity of the HEALTH-PIC. This novel pictorial scale not only provides a reliable and valid assessment of the multidimensional aspects of health-related quality of life among children but can also overcome existing barriers of parent-proxy or age-suited questionnaires.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-05-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144079795","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}
Renee Jones, Kim Dalziel, Harriet Hiscock, Alexander van Heudsen, Nancy Devlin
{"title":"Use of a generic Paediatric Patient Reported Outcome Measure (P-PROM) in Routine hospital Outpatient Care for Kids (ROCK): A qualitative exploration of adolescent, caregiver and service provider perspectives (P-PROM ROCK Phase 1).","authors":"Renee Jones, Kim Dalziel, Harriet Hiscock, Alexander van Heudsen, Nancy Devlin","doi":"10.1007/s11136-025-03990-3","DOIUrl":"https://doi.org/10.1007/s11136-025-03990-3","url":null,"abstract":"<p><strong>Purpose: </strong>To explore patient, caregiver, and service provider perspectives on the implementation of a generic Paediatric Patient Reported Outcome Measure (P-PROM), their perspectives on the EQ-5D-Y-5L, and to consider how these insights can be used to co-design routine use of EQ-5D-Y-5L in paediatric outpatient care.</p><p><strong>Methods: </strong>Individual semi-structured interviews were conducted with adolescent patients, caregivers, and providers (allied health, nurses, doctors) who had provided or received outpatient care at The Royal Children's Hospital, Australia. Interview transcripts were analysed using framework analysis and subsequent themes were mapped to an acceptability framework.</p><p><strong>Results: </strong>Interviews were conducted in June and July 2023 with six service providers, five caregivers and three adolescent patients. Despite service provider concerns that generic P-PROMs may be too broad; all were open to their use. Participants did not see value in patients simply completing a generic P-PROM; it was emphasised that such information needed to be used and responded to. Participants were largely supportive of using the EQ-5D-Y-5L in clinical care, although some were concerned about the short recall period and negative framing. Displaying EQ-5D-Y-5L responses by item was preferred by participants. These different perspectives were summarised into enablers and barriers of acceptability.</p><p><strong>Conclusions: </strong>Perspectives gathered from this study highlight that generic P-PROMs, such as EQ-5D-Y-5L, may have potential for use in paediatric outpatient care. However, to have a meaningful impact, careful consideration is needed regarding implementation. Results have informed co-design of the P-PROM ROCK Program.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-05-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144064549","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}
Jeffrey A Johnson, Mathieu F Janssen, Fatima Al Sayah, Henry Bailey, Mihir Gandhi, Dominik Golicki, Nils Gutacker, Erica Lubetkin, Brendan Mulhern, Fredrick Dermawan Purba, Juan M Ramos-Goñi, Desiree Scott, Hilary Short, Trudy Sullivan, Rosalie Viney, Zhihao Yang, Victor Zárate
{"title":"EuroQol data for assessment of population health needs and instrument evaluation (EQ-DAPHNIE): a study for enhancing population health assessment.","authors":"Jeffrey A Johnson, Mathieu F Janssen, Fatima Al Sayah, Henry Bailey, Mihir Gandhi, Dominik Golicki, Nils Gutacker, Erica Lubetkin, Brendan Mulhern, Fredrick Dermawan Purba, Juan M Ramos-Goñi, Desiree Scott, Hilary Short, Trudy Sullivan, Rosalie Viney, Zhihao Yang, Victor Zárate","doi":"10.1007/s11136-025-03983-2","DOIUrl":"https://doi.org/10.1007/s11136-025-03983-2","url":null,"abstract":"<p><strong>Background: </strong>Methods for collecting self-reported health status measures in population health surveys vary significantly across countries, presenting challenges to comparability. The EuroQol Data for Assessment of Population Health Needs and Instrument Evaluation (EQ-DAPHNIE) project aims to address this issue by developing infrastructure to generate representative datasets across multiple countries. This initiative aims to standardize data collection methodologies and to evaluate the performance of various health status measures, providing a foundation for reliable population health assessments. This paper describes the rationale, design and data collection methods for the EQ-DAPHNIE project.</p><p><strong>Methods/design: </strong>EQ-DAPHNIE employs a cross-sectional online survey design targeting the general adult population across various countries. Participants were recruited through an online panel provider. Each country had a target sample of 4500 responses, with quota sampling to ensure representativeness based on age, sex, income, region, and language. The survey collected comprehensive data on social determinants of health at both individual and neighbourhood levels. Participation was voluntary, and measures were taken to maintain data anonymity and ensure data quality through pre-testing and various quality assurance approaches.</p><p><strong>Discussion: </strong>The EQ-DAPHNIE project represents a significant advancement in generating large, representative, and comparable population health datasets across multiple countries. By employing precise sampling strategies, robust recruitment and data collection methods, and rigorous quality control measures, the project aims to provide a valuable resource for assessing and understanding population health and evaluating various health-related quality of life (HRQoL) and wellbeing instruments.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-05-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144050580","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}
Quality of Life ResearchPub Date : 2025-05-01Epub Date: 2025-01-28DOI: 10.1007/s11136-025-03904-3
Hye Jin Nam, Ju Young Yoon
{"title":"The role of different health information sources in moderating the impact of health literacy on health-related quality of life: evidence from a population-based study in Korea.","authors":"Hye Jin Nam, Ju Young Yoon","doi":"10.1007/s11136-025-03904-3","DOIUrl":"10.1007/s11136-025-03904-3","url":null,"abstract":"<p><strong>Purpose: </strong>Health literacy is a key aspect of healthy living and is widely recognized as a crucial determinant of health outcomes and disparities. Health literacy enables individuals to make informed decisions by accessing, understanding, and utilizing health-related information effectively. Access to and use of health information are essential for optimal health outcomes. This study explores whether different health information sources, such as active, interpersonal, and passive sources, moderate the relationship between health literacy and health-related quality of life (HRQoL).</p><p><strong>Methods: </strong>This study analyzed data from the 2021 Korea Health Panel (Version 2.1) including 4164 eligible samples. Health literacy was assessed using the Korean version of the European Health Literacy Survey Questionnaire. Complex sample analysis was used to compute descriptive statistics of the study variables. To determine the moderating effects of health information sources, this study used Hayes's PROCESS macro (Model 1).</p><p><strong>Results: </strong>Among the weighted sample of 16,351,227 participants, 76.1% used active sources to obtain health information, whereas 13.5% and 10.5%, respectively, used interpersonal and passive sources. Regression analysis showed that the moderating effects of health information sources were positively significant. The associations between health literacy and HRQoL were stronger in the interpersonal source group compared to the active or passive source groups.</p><p><strong>Conclusion: </strong>This study highlights the moderating role of interpersonal health information sources in enhancing the relationship between health literacy and health-related quality of life. Interventions targeting interpersonal communication channels may be effective in improving health outcomes, particularly among populations with limited health literacy.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"1333-1344"},"PeriodicalIF":3.3,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143053461","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}
Quality of Life ResearchPub Date : 2025-05-01Epub Date: 2025-02-21DOI: 10.1007/s11136-025-03914-1
Noelle J M C Vrancken Peeters, Roos Kerklaan, Carla Vlooswijk, Rhodé M Bijlsma, Suzanne E J Kaal, Jacqueline M Tromp, Monique E M M Bos, Tom van der Hulle, Maaike de Boer, Janine Nuver, Mathilde C M Kouwenhoven, Winette T A van der Graaf, Olga Husson
{"title":"Long-term health-related quality of life among adolescent and young adult breast cancer survivors.","authors":"Noelle J M C Vrancken Peeters, Roos Kerklaan, Carla Vlooswijk, Rhodé M Bijlsma, Suzanne E J Kaal, Jacqueline M Tromp, Monique E M M Bos, Tom van der Hulle, Maaike de Boer, Janine Nuver, Mathilde C M Kouwenhoven, Winette T A van der Graaf, Olga Husson","doi":"10.1007/s11136-025-03914-1","DOIUrl":"10.1007/s11136-025-03914-1","url":null,"abstract":"<p><strong>Purpose: </strong>As the prognosis for adolescents and young adults (AYAs) with breast cancer has improved, long-term health-related quality of life (HRQoL) has become increasingly important. This study aimed to analyze the long-term HRQoL of AYA breast cancer survivors compared to an age-matched normative population and to identify factors associated with HRQoL.</p><p><strong>Methods: </strong>Secondary analyses were conducted using data from the SURVAYA study. The European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core-30 (EORTC QLQ-C30) was used to assess HRQoL. The Mann-Whitney U test was used to compare HRQoL scores of AYA breast cancer survivors with those of the normative population (n = 409). Linear regression models were constructed to identify patient and treatment characteristics associated with HRQoL.</p><p><strong>Results: </strong>A total of 944 female AYA breast cancer survivors were included, with a median age of 36.0 years and a median follow-up of 12.2 years. AYA breast cancer survivors scored significantly lower on five functional scales: physical, role, emotional, cognitive, and social, and higher on five symptom scales: fatigue, pain, dyspnea, insomnia, and financial impact compared to the normative population. Being in a relationship, having a positive body image, and adaptive coping were positively associated with HRQoL, while older age, chemotherapy, unemployment, and maladaptive coping were negatively associated.</p><p><strong>Conclusion: </strong>AYA breast cancer survivors experience significantly compromised long-term HRQoL compared to an age-matched normative population. These results highlight the need for tailored follow-up care and long-term support, as well as the importance of shared decision-making about the benefits and risks of treatments before initiation.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"1483-1500"},"PeriodicalIF":3.3,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12064603/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143468887","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":"Identifying potential action points for reducing kinesiophobia among atrial fibrillation patients: a network and DAG analysis.","authors":"Limei Chen, Xinyu Gou, Shenglan Yang, Hui Dong, Fengwei Dong, Jing Wu","doi":"10.1007/s11136-025-03897-z","DOIUrl":"10.1007/s11136-025-03897-z","url":null,"abstract":"<p><strong>Purpose: </strong>Kinesiophobia is prevalent among patients with atrial fibrillation (AF), leading to a notable decrease in exercise tolerance and quality of life (QoL). AF-related kinesiophobia encompasses a complex cascade reaction, influenced by psycho-physiological and behavioral factors. To investigate the complex interconnections associated with kinesiophobia among AF patients and identify potential intervention points for its management.</p><p><strong>Methods: </strong>From June 2021 to November 2022, we collected data through paper surveys, using convenience sampling to invite patients with AF. 541 AF patients were included in this study. Data were collected using Tampa Scale for Kinesiophobia Heart (TSK-SV Heart), the Atrial Fibrillation Effect on Quality-of-Life (AFEQT), the Brief Illness Perception Questionnaire (BIPQ), and Medical Coping Modes Questionnaire (MCMQ), respectively. Network analysis and directed acyclic graphs (DAG) were used to visualize the intricate relationships of the factors.</p><p><strong>Results: </strong>The network structure identifies \"Avoidance of Exercise\" as a central node, which, alongside \"Illness Perception\" and \"Resignation,\" acting as bridges that link and activate other factors of AF-related kinesiophobia. The DAG suggests that AF symptoms, located upstream, may act as a trigger, initiating a cascade effect impacting illness perception and coping styles.</p><p><strong>Conclusions: </strong>\"AF symptoms,\" along with psychological factors such as \"illness perception,\" and \"coping styles,\" may serve as potential action points to reduce AF-related kinesiophobia and ultimately improve the overall QoL for AF patients.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"1253-1264"},"PeriodicalIF":3.3,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143382985","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}
Quality of Life ResearchPub Date : 2025-05-01Epub Date: 2025-01-30DOI: 10.1007/s11136-025-03898-y
Ida Blomqvist, John Eric Chaplin, Eva Henje, Inga Dennhag
{"title":"Psychometric properties and post-hoc CAT analysis of the pediatric PROMIS® item banks anxiety and depressive symptoms in a combined Swedish Child and Adolescent Psychiatry and School sample.","authors":"Ida Blomqvist, John Eric Chaplin, Eva Henje, Inga Dennhag","doi":"10.1007/s11136-025-03898-y","DOIUrl":"10.1007/s11136-025-03898-y","url":null,"abstract":"<p><strong>Purpose: </strong>The objective of this study is to assess the psychometric properties and reliability of the Swedish Patient-Reported Outcomes Measurement Information System (PROMIS) item banks for anxiety and depressive symptoms with item response theory analysis and post-hoc computerized adaptive testing in a combined Swedish Child and Adolescent Psychiatry (CAP) and school sample.</p><p><strong>Methods: </strong>Participants (n = 928, age 12-20) were recruited from junior and high schools and Child and Adolescent Psychiatry Clinics in the region of Västerbotten. Unidimensionality, local independence, and monotonicity was tested. We fitted a graded response model to the data and tested differential item functioning (DIF) for sex, age group, sample type, and language (Swedish vs. U.S.). Moreover, a post-hoc computer adaptive testing (CAT) simulation was performed. All analysis were made in R.</p><p><strong>Results: </strong>Unidimensionality, local independence, and monotonicity were acceptable. The graded response model yielded acceptable item fit, discriminative, and threshold values for all items in both item banks. DIF for language (Swedish vs. U.S.) was found for two items from the anxiety and one item from the depressive symptoms item banks. A Stocking-lord transformation was used for the items displaying language DIF, and post-hoc CAT simulations were performed. The post-hoc CAT simulation showed reliability around 0.9 for both Swedish and official U.S. item parameters T-scores calibration from within normal limits to severe anxiety and depressive symptoms.</p><p><strong>Conclusion: </strong>The Swedish pediatric PROMIS item banks of anxiety and depressive symptoms are appropriate to assess mild to severe symptoms of anxiety and depressive symptoms in Swedish school- and CAP samples.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"1265-1275"},"PeriodicalIF":3.3,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12064460/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143067536","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}
Quality of Life ResearchPub Date : 2025-05-01Epub Date: 2024-12-16DOI: 10.1007/s11136-024-03866-y
Constantin Yves Plessen, Felix Fischer, Claudia Hartmann, Gregor Liegl, Ben Schalet, Aaron J Kaat, Rodrigo Pesantez, Alexander Joeris, Marilyn Heng, Matthias Rose
{"title":"Differential item functioning between English, German, and Spanish PROMIS® physical function ceiling items.","authors":"Constantin Yves Plessen, Felix Fischer, Claudia Hartmann, Gregor Liegl, Ben Schalet, Aaron J Kaat, Rodrigo Pesantez, Alexander Joeris, Marilyn Heng, Matthias Rose","doi":"10.1007/s11136-024-03866-y","DOIUrl":"10.1007/s11136-024-03866-y","url":null,"abstract":"<p><strong>Purpose: </strong>We investigated the validity of the German and Spanish translations of 35 new high functioning items added to the Patient Reported Outcomes Measurement Information System (PROMIS®) Physical Function item bank 2.0. We assessed differential item functioning (DIF) between three general population samples from Argentina, Germany, and the United States.</p><p><strong>Methods: </strong>PROMIS Physical Function data was collected in online panels from 3601 individuals (mean age, 41.6 years old; range, 18-88 years; 53.7% female). Of these, 1001 participants completed the Spanish version, 1000 completed the German version, and 1600 completed the English version. DIF was assessed by a multiverse analysis that systematically varied analytic choices across the entire range of plausible options within the logistic ordinal regression framework.</p><p><strong>Results: </strong>Translated items generally met the assumptions of unidimensionality, monotonicity, and local independence. The 272 different analyses suggest consistent DIF between languages in four items. Test characteristic curves suggested that the magnitude and impact of DIF on the test scores were negligible for all items at the test level. After correcting for potential DIF, we observed greater scoring for physical functioning in Argentina compared to the US, Cohen's d = 0.25, [0.17, 0.33], and Argentina compared to Germany, Cohen's d = 0.23, [0.15, 0.32].</p><p><strong>Conclusions: </strong>Our findings support the universal applicability of PROMIS Physical Function items across general populations in Argentina, Germany, and the U.S. The sensitivity analyses indicate that the identification of DIF items was robust for different data analytic decisions. Multiverse analysis is a promising approach to address lack of clear cutoffs in DIF identification.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"1377-1391"},"PeriodicalIF":3.3,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12064622/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142829704","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}
Jose Marquez, Margarita Panayiotou, Reihaneh Farzinnia, Qiqi Cheng, Neil Humphrey
{"title":"Correction: Longitudinal relationships across sleep, physical activity, and mental wellbeing in early-to-mid-adolescence: a developmental cascades investigation.","authors":"Jose Marquez, Margarita Panayiotou, Reihaneh Farzinnia, Qiqi Cheng, Neil Humphrey","doi":"10.1007/s11136-025-03921-2","DOIUrl":"10.1007/s11136-025-03921-2","url":null,"abstract":"","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"1251"},"PeriodicalIF":3.3,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12064443/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143670375","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":"Patient-reported outcome measures (PROMs) used among liver transplant recipients: a systematic review and methodological quality appraisal.","authors":"Qi Zhang, Xiao Chen, YiChen Kang, JingXian Yu, YuXia Zhang","doi":"10.1007/s11136-025-03893-3","DOIUrl":"10.1007/s11136-025-03893-3","url":null,"abstract":"<p><strong>Aim: </strong>To identify instruments used to measure patient-reported outcomes after LT, and critically evaluate their measurement properties.</p><p><strong>Methods: </strong>Five online databases were searched to find English-language LT-specific PROMs from their inception to October 2024. Studies describing the development or validation of PROMs were included. Two reviewers extracted and synthesized information about the characteristics of the studies and instruments. The methodological quality of the included studies was evaluated using the Consensus-Based Standards for the Selection of Health Measurement Instrument (COSMIN). Two reviewers independently evaluated the methodological quality of the included instruments.</p><p><strong>Results: </strong>A total of 17 studies involving 14 PROMs met the inclusion criteria and were included in this review. The included PROMs assessed a range of outcomes, including health-related quality of life, therapeutic adherence, symptom experience, social participation, feeling for the donor, satisfaction and informational needs. None of the 14 scales reported the ten boxes of measurement properties outlined by the COSMIN. Among all the measurement properties, content validity from expert (64.3%, 9/14) and internal consistency (57.1%, 8/14) were the two most frequently measured attributes. Less than half of the studies evaluated the content validity from the patients' perspective. Four studies evaluated structural validity using exploratory factor analysis, but no study conducted confirmatory factor analysis or used IRT method to measure the structural validity.</p><p><strong>Conclusion: </strong>This systematic review provided an overall picture and detailed analysis of LT-specific PROMs, and highlighted the paucity of well-developed and validated instruments. Further studies are urgently needed, both in terms of exploring patients' health concerns after LT and validating the instruments.</p><p><strong>Reporting method: </strong>This study is reported according to the PRISMA Statement.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"1179-1193"},"PeriodicalIF":3.3,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143009847","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}