Journal of Patient-Reported Outcomes最新文献

{"title":"Psychometric properties of the EQ-5D-5L in diabetes mellitus patients in Spain.","authors":"Amaia Bilbao-González, Marta González-Sáenz de Tejada, Montse Ferrer, Yolanda Ramallo-Fariña, Miguel Paja-Fano, Carlos García-Forero, Daniela Mestre, Iñigo Gorostiza-Hormaetxe","doi":"10.1186/s41687-025-00874-5","DOIUrl":"10.1186/s41687-025-00874-5","url":null,"abstract":"<p><strong>Background: </strong>The EQ-5D-5L five-dimensional instrument, is one of the most widely used generic preference-based questionnaires to measure health-related quality of life and to estimate utility indices for use in economic evaluation. This study aimed to assess the psychometric properties of the Spanish EQ-5D-5L questionnaire in patients with Diabetes Mellitus (DM) assessing reliability, validity, and item-level properties such as item functioning.</p><p><strong>Methodology: </strong>We included 133 patients with DM who completed the EQ-5D-5L, the Audit on Diabetes-Dependent Quality of Life (ADDQoL), the Hospital Anxiety and Depression Scale (HADS), one question about general health and sociodemographic, and clinical data. The reliability was assessed by Cronbach's alpha, and the item functioning by the item response theory (IRT). Convergent validity was tested using the Spearman correlation coefficient between EQ-5D-5L, ADDQoL, HADS and the general health question. We examined known-groups validity by comparing the EQ-5D-5L scores between subgroups defined by age, gender, BMI, regular physical activity, disease duration, glycemic control by glycosylated blood hemoglobin (HbA1c) (%), type of DM, general health and anxiety and depression level using t-test, ANOVA, Wilcoxon or Kruskal-Wallis tests.</p><p><strong>Results: </strong>The reliability was supported with a Cronbach's alpha of 0.78. The IRT results supported the unidimensionality and showed adequate item functioning, except for the anxiety/depression dimension. The item with highest discriminatory power was usual activities dimension, followed by self-care and mobility dimensions. The EQ-5D-5L showed adequate convergent validity, with high correlation with the ADDQoL, HADS and general health. Older age, women, obese, no regular physical activity, ≥ 10 years of disease duration, poor glycemic control, poorer general health and higher anxiety and depression level linked with lower EQ-5D-5L scores.</p><p><strong>Conclusions: </strong>These findings support the adequate psychometric properties of the EQ-5D-5L in patients with DM, supporting its use for clinicians and researchers as an outcome measure and for use in economic evaluation studies.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"9 1","pages":"60"},"PeriodicalIF":2.4,"publicationDate":"2025-05-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12122406/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144175148","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Structural validity and test-retest reliability of the Patient Reported Inventory of Self-Management of Chronic Conditions (PRISM-CC) in a Swedish population of seventy-year-olds with long-term health conditions.","authors":"Ingrid Olsson, George Kephart, Tanya Packer, Sabine Björk, Ulf Isaksson, Yu-Ting Chen, Anna Nordström, Åsa Audulv","doi":"10.1186/s41687-025-00892-3","DOIUrl":"10.1186/s41687-025-00892-3","url":null,"abstract":"<p><strong>Background: </strong>Self-management is internationally recognized as important to maintain independence, quality of life and to minimize the risk of poor health outcomes, especially among persons with multi-morbidity. Self-management can be especially challenging for older adults, who have higher rates of multi-morbidity and experience diverse impacts of long-term health conditions on everyday life. Good measures of self-management are currently lacking. The Patient Reported Inventory of Self-Management of Chronic Conditions (PRISM-CC) is a new, generic, multidimensional measure of self-perceived ease or difficulty with self-management, that overcomes many of the limitations of existing measures.</p><p><strong>Objectives: </strong>To test the structural validity and test-retest reliability of the Swedish version of the PRISM-CC among seventy-year-olds with long-term health conditions.</p><p><strong>Methods: </strong>Translation of PRISM-CC items into Swedish followed the Patient-Reported Outcome (PRO) Consortium process. Survey data (n = 516 Swedish seventy-year-olds with ≥1 long-term health condition) was used to assess structural validity of the 36-item PRISM-CC using multidimensional item response theory (IRT) models. Test-retest reliability was assessed on a subsample of 58 individuals using intra-class correlation coefficient (ICC) and Bland-Altman Plots.</p><p><strong>Results: </strong>The Swedish PRISM-CC demonstrated good internal consistency with Cronbach's alpha >0.8 for all domains, and good fit to a graded response IRT model (RMSEA 0.034, SRMSR 0.050, CFI 0.952 and TLI 0.945). All 36 items had standardized loadings >0.7. ICC showed moderate to good test-retest reliability for all seven domains. The Bland-Altman plots showed minimal bias and good test-retest agreement for all domains.</p><p><strong>Conclusion: </strong>The Swedish PRISM-CC showed good structural validity and test-retest reliability in this sample of relatively healthy seventy-year-olds with long-term health condition(s). Further validation in a population with more severe health issues is needed.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"9 1","pages":"59"},"PeriodicalIF":2.4,"publicationDate":"2025-05-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12119446/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144162802","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","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 (HRQoL) after transcatheter aortic valve implantation in aortic stenosis patients: exploring a novel threshold for clinically significant improvement after 12 months.","authors":"Marte Sævik, Marit Helen Andersen, Jan Otto Beitnes, Lars Aaberge, Per Steinar Halvorsen","doi":"10.1186/s41687-025-00894-1","DOIUrl":"10.1186/s41687-025-00894-1","url":null,"abstract":"<p><strong>Aim: </strong>The study aimed to determine the proportion of patients with significant improvements in Health-Related Quality of Life (HRQoL) 12 months after Transcatheter Aortic Valve Implantation (TAVI), using a threshold for physical function (PF) and physical role (RP) domains of the SF-36 questionnaire. Additionally, we explored shared baseline characteristics of patients reporting these improvements.</p><p><strong>Methodology: </strong>In this prospective observational study, 88 patients with symptomatic, severe aortic stenosis (AS) and preserved ejection fraction were enrolled between April 2017 and February 2020. Exclusion criteria were clinical instability, pacemaker, chronic AF, comorbidities with life expectancy < 1 year. HRQoL was evaluated before and 12 months after transfemoral TAVI using the Norwegian version 2.0 of SF-36, and presented as mean (95% confidence interval). Other outcome measures were 6-minute walking test and NYHA- classification. Independent samples t-test or Mann-Whitney U test was used for between-group comparisons as appropriate. Logistic regression or Chi2-test were used to explore associations between changes in PF and RP and clinical parameters. Statistical significance was set at p ≤ 0.05, and clinically significant changes in HRQoL were defined as increase of ≥ 15 points in the PF and RP categories.</p><p><strong>Results: </strong>Mean age of the cohort was 80 ± 6 years. 44 (50%) patients reported clinically significant improvement in PF, and 46 (52%) in the RP domain. Baseline scores were significantly lower in patients reporting clinical improvement after TAVI, with PF scores pre intervention 43.07 (37.37-48.78) vs. 65.34 (59.01-71.68), p < 0.001, and RP 36.01 (29.56-42.46) vs. 59.92 (50.91-68.92), p < 0.001. No significant associations were found between improvement in domain scores and parameters from the routine baseline examination, but having ≥ 15-point improvement correlated to baseline PF and RP scores.</p><p><strong>Conclusion: </strong>Our study highlights the importance of defining a uniform threshold for clinically significant improvement in the SF-36 HRQoL questionnaire for patients undergoing TAVI. Half of the patients reported favorable long-term outcome for PF and RP aspects of SF-36. This emphasizes the importance of HRQoL assessment in the preoperative work up for patients undergoing TAVI.</p><p><strong>Trial registration: </strong>https://www.</p><p><strong>Clinicaltrials: </strong>gov/ 05.04.2017 with ID NCT03107923.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"9 1","pages":"58"},"PeriodicalIF":2.4,"publicationDate":"2025-05-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12106267/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144143867","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Translation, cross-cultural adaptation, and validation of the Norwegian version of the Keratoconus Outcomes Research Questionnaire.","authors":"Eilin Lundanes, Svein Magne Roten, Helle Kristine Falkenberg, Lena Leren, Vibeke Sundling","doi":"10.1186/s41687-025-00896-z","DOIUrl":"10.1186/s41687-025-00896-z","url":null,"abstract":"<p><strong>Purpose: </strong>To translate and adapt the Keratoconus Outcomes Research questionnaire (KORQ) to Norwegian language, culture, and environment, and to validate the translated version in a Norwegian population with keratoconus.</p><p><strong>Methods: </strong>KORQ was translated to Norwegian using a multi-step methodology. Persons with keratoconus submitted responses to KORQ-NO and NEI VFQ-25 through a digital platform, and a retest of KORQ-NO was performed over the telephone. Additional data from a clinical intervention study was included. The psychometric properties of KORQ-NO were assessed by Rasch analysis. Test-retest reliability, construct validity, and responsiveness were explored by Intraclass Correlation Coefficients, Spearman correlations and Wilcoxon Signed-rank test.</p><p><strong>Results: </strong>KORQ-NO and NEI VFQ-25 were completed by 165 participants with keratoconus. With few adjustments, the \"Activity limitations\" (AL) and \"Symptoms\" (S) subscales of KORQ-NO exhibit acceptable psychometric properties with good model fit, high internal reliability, and well-targeted items to the population. Deletion of four items (AL3, AL3b, AL12, AL15) improved dimensionality of the \"Activity limitations\" subscale. Differential item functioning was present in two items (AL4 and AL6). Participants and optometrists confirmed content validity, and KORQ-NO exhibited good test-retest reliability (AL ICC = 0.90 and S ICC = 0.81), construct validity, and responsiveness.</p><p><strong>Conclusions: </strong>Successful translation and adaptation of KORQ to Norwegian language, culture and environment was confirmed by acceptable psychometric properties, with good validity, reliability, and responsiveness. The authors support the use of KORQ-NO in research, clinical practice, and as documentation for national insurance benefit applications.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"9 1","pages":"57"},"PeriodicalIF":2.4,"publicationDate":"2025-05-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12098238/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144120319","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Psychometric validation of the EORTC QLQ-OES18 in patients with advanced or metastatic esophageal squamous cell carcinoma.","authors":"Lauren Podger, Daniel Serrano, Liyun Li, Lin Zhan, Boxiong Tang, Gisoo Barnes","doi":"10.1186/s41687-025-00891-4","DOIUrl":"10.1186/s41687-025-00891-4","url":null,"abstract":"<p><strong>Background: </strong>The EORTC QLQ-OES18 has previously demonstrated clinical validity; however, there are limited published psychometric data for patients with advanced esophageal squamous cell carcinoma (ESCC). We evaluated the measurement properties of the QLQ-OES18 in a clinical trial population of patients with advanced or metastatic ESCC.</p><p><strong>Methodology: </strong>Analyses used data from RATIONALE 302 (NCT03430843), a randomized phase 3 study of tislelizumab versus investigator-chosen chemotherapy as second-line treatment for patients with advanced or metastatic ESCC. Psychometric validation of the QLQ-OES18 included tests of reliability, construct validity, ability to detect change, and estimation of anchor-based meaningful within-patient change (MWPC) thresholds-the latter two being exploratory given that the trial was not powered to detect efficacy in patient-reported outcome endpoints.</p><p><strong>Results: </strong>In total, 512 patients were randomized to either tislelizumab or chemotherapy; the average age was 61.5 years, and 84.4% were male. Three of the 4 QLQ-OES18 multi-item scales (dysphagia, eating, and pain) and the index scale met the prespecified criterion for acceptable internal consistency as well as acceptable test-retest reliability. Associations between baseline QLQ-OES18 scores and convergent/discriminant validators were generally as expected (i.e., the QLQ-OES18 pain score had a strong positive correlation with the QLQ-C30 pain score). For known-groups validity, 88.6% of analyses demonstrated the hypothesized direction of effect, suggesting that the expected differences in baseline QLQ-OES18 scores between prespecified groups were observed. Ability to detect change analyses indicated that several QLQ-OES18 domain scores demonstrated sensitivity in detecting possible treatment effects, although many patients reported minimal symptoms at baseline, which limited the ability to detect significant improvement.</p><p><strong>Conclusion: </strong>Overall, a collection of psychometric evidence indicated that the EORTC QLQ-OES18 reliably and validly measured symptom severity in the RATIONALE 302 population. Specifically, the dysphagia domain consistently demonstrated robust psychometric properties. Limitations in data reduced the interpretability of MWPC thresholds and are discussed in detail.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"9 1","pages":"56"},"PeriodicalIF":2.4,"publicationDate":"2025-05-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12095746/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144111248","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The relationship among patient reported outcome measure scores with health care costs and inpatient admission: results from Utah mEVAL and value driven outcomes.","authors":"Rachel Kroencke, Zoe Gombart, Yue Zhang, Haojia Li, Rachel Hess","doi":"10.1186/s41687-025-00889-y","DOIUrl":"10.1186/s41687-025-00889-y","url":null,"abstract":"<p><strong>Background: </strong>Patient-reported outcomes measures (PROMs) profile patient health status, have been found to be helpful in identifying high health care utilizers, and may be useful in providing targeted interventions to decrease health care costs. In 2013 the University of Utah Health (UU Health) began collecting mental and physical health PROMs using Patient Reported Outcomes Measurement Information System (PROMIS) instruments through a tool called My Evaluation (mEVAL). In 2012 UU Health began cataloguing inpatient and outpatient healthcare-associated costs. The objective of this study was to identify association of poor PROMIS physical function and depression scores with (1) likelihood of inpatient hospitalization and (2) overall inpatient healthcare costs.</p><p><strong>Methodology: </strong>This study was a retrospective observational cohort study including patients seen at UU Health between 1/2013 and 12/2017 who completed PROMIS instruments at an outpatient visit using the mEVAL platform. PROMIS instruments were completed prior to outpatient visits. The primary outcome was time to incident hospitalization modeled by using the Cox proportional hazards approach. For cost analysis, raw inpatient healthcare costs were fitted using a median regression model. Both results were adjusted.</p><p><strong>Results: </strong>Of 92,383 people, the average age was 48 (SD 18.6); 57% were female; and 87% identified as non-Hispanic white. A total of 11,909 patients who completed one or both of the mEVAL PROMIS instruments were admitted. The average PROMIS physical function and depression scores were 44.9 and 51.1, respectively. Those with worse physical function scores and worse depression scores were more likely to be hospitalized [HR = 1.77, 95% confidence interval (CI) (1.678, 1.872); HR (95% CI) = 1.149 (1.059, 1.246), respectively]. A physical function score 1.5 SD below the mean was associated with an increased median hospitalization cost of $2496; there was no statistically significant association between depression score 1.5 SD above mean and hospitalization costs.</p><p><strong>Conclusions: </strong>Poor physical function scores were associated with an increased risk of hospitalization and higher inpatient health costs, while poor depression scores were only associated with increased risk of hospitalization. Future work should examine if improvement in these PROMs alters these metrics.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"9 1","pages":"55"},"PeriodicalIF":2.4,"publicationDate":"2025-05-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12089542/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144095121","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","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, physical and mental capacity at one year follow up of COVID-19 ICU patients: A prospective cohort study.","authors":"Anders Ersson, Henrik Överengen Reuterborg, Anestis Divanoglou, Richard Levi, Lotti Orwelius","doi":"10.1186/s41687-025-00883-4","DOIUrl":"10.1186/s41687-025-00883-4","url":null,"abstract":"<p><strong>Purpose: </strong>In 2020 as COVID-19 rapidly overwhelmed ICU resources, patient care capacity was reduced thus increasing the risk of development of post intensive care syndrome (PICS). Therefore, an increased incidence of survivors with neurocognitive and neuromuscular impairment could be anticipated. This study aimed to describe residual reductions in health-related quality of life (HRQoL) and risk factors for PICS as they pertain to outcomes one year after intensive care.</p><p><strong>Patients and methods: </strong>Between 01-03-2020 and 31-08-2020, all adult COVID-19 ICU patients discharged alive in two Swedish ICU were included. At 2-, 6- and, 12-months post discharge follow up was conducted. Primary outcome parameters were HRQoL up to 12-months after ICU discharge. Secondary outcome parameters were clinimetric results for physical, mental, and cognitive functions at 6 months after intensive care stay.</p><p><strong>Results: </strong>Data from 41 patients were analyzed. Fatigue, anxiety, respiratory impairments, and experienced decline in physical stamina were the dominating findings at 6 months. Criteria for PICS were fulfilled in 93% of the study population and a 60% reduction in overall HRQoL, compared with a normal age adjusted population, was seen at follow up. A slight improvement was seen at 6 months whereafter no further significant improvement in HRQoL was detected. Fatigue was the most dominant complaint, expressed by almost all patients at follow up.</p><p><strong>Conclusion: </strong>Long term outcome reported in this study showed longstanding impairment in HRQoL, mostly related to reduced well-being and perceived limitations in physical ability. Overall, our findings show similarities with previously reported recovery patterns after intensive care. However, the COVID-19 cohort displayed a more profound reduction in HRQoL paralleled with severe fatigue and respiratory limitations. This signals the need for a deeper understanding of pathophysiological mechanisms of COVID-19 induced residual impairments and more precise instruments to tailor an individually designed aftercare.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"9 1","pages":"52"},"PeriodicalIF":2.4,"publicationDate":"2025-05-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12078742/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144037809","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Quality of Life after Brain Injury in children aged six and seven years (QOLIBRI-KIDDY) - development and scale analysis of the first disease-specific self-report instrument for young children after traumatic brain injury.","authors":"Nicole von Steinbuechel, Marina Zeldovich, Fabian Bockhop, Ugne Krenz, Dagmar Timmermann, Anna Buchheim, Inga K Koerte, Michaela Veronika Bonfert, Steffen Berweck, Matthias Kieslich, Knut Brockmann, Maike Roediger, Sven Greving, Axel Neu, Ulrike Wartemann, Joachim Suss, Christian Auer, Holger Muehlan, Katrin Cunitz","doi":"10.1186/s41687-025-00890-5","DOIUrl":"10.1186/s41687-025-00890-5","url":null,"abstract":"<p><p>To date, there are no age-appropriate instruments for assessing the subjective impact of pediatric traumatic brain injury (TBI) sequelae on multiple domains of health-related quality of life (HRQoL) in young children. The present study therefore aims to develop and examine the psychometric properties of a new disease-specific, self-reported HRQoL instrument, the Quality of Life after Brain Injury for children aged 6-7 years (QOLIBRI-KIDDY). Questionnaire development included focus group interviews, cognitive debriefings, and Delphi expert panels. The pilot version of the instrument was tested in 72 children (6.00-7.92 years of age; 60% boys; 86% after mild TBI). After item reduction based on a confirmatory scale analysis considering the six-factor structure of the questionnaire versions for older children, adolescents, and adults (Cognition, Self, Daily Life & Autonomy, Social Relationships, Emotions, Physical Problems), its reliability and validity were investigated. The final version of the QOLIBRI-KIDDY comprises 23 items. Psychometric analyses indicated internal consistency to be satisfactory (ɑ = 0.49-0.72; ω = 0.57-0.78). Construct validity suggested the expected overlap between generic HRQoL and TBI-specific HRQoL (r = 0.17-0.36). There were small (r > 0.2) to moderate (r > 0.3) correlations between lower TBI-specific HRQoL and participants with lower learning rates, anxiety, depression, and post-concussion symptoms, particularly on the Cognition, Social Relationships, Emotions, and Physical Problems scales. The comparison of known groups revealed significant moderate and significant effects for lower HRQoL in children with depressive symptoms on the Emotions scale (d = - 0.46) and with post-concussion symptoms on the Cognition (d = - 0.42) and Social Relationships scales (d = - 0.56). The QOLIBRI-KIDDY is a comprehensive, yet economical tool, comparable in content and items to the other age-adapted QOLIBRI versions. Its application has the potential to provide longitudinal data on subjects after TBI from childhood to older age, with a subjective perspective that can contribute to improving the therapy, rehabilitation, and daily life of young children.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"9 1","pages":"53"},"PeriodicalIF":2.4,"publicationDate":"2025-05-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12078902/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144019461","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Research trends among new investigators at ISOQOL: a bibliometric analysis from 2019 to 2023.","authors":"Jae-Yung Kwon, Manraj N Kaur, Ellen B M Elsman, Ava Mehdipour, Lori Suet Hang Lo, Ahmed M Y Osman, Sandrine Herbelet, Carrie-Anne Ng, Lotte van der Weijst","doi":"10.1186/s41687-025-00878-1","DOIUrl":"10.1186/s41687-025-00878-1","url":null,"abstract":"<p><strong>Background: </strong>New investigators (NI), encompassing graduate students, recent doctoral graduates, and early-career faculty, are instrumental in advancing quality of life (QoL) research through innovative methodologies and diverse perspectives. Within the International Society for Quality of Life Research (ISOQOL), the New Investigators Special Interest Group (NI-SIG) fosters collaboration and supports this community. This study utilizes bibliometric analysis to examine the contributions of NI-SIG members, focusing on publication trends, collaboration patterns, and thematic developments in QoL research.</p><p><strong>Methodology: </strong>Data on publications authored by 56 NI-SIG members between 2019 and 2023 were extracted from Web of Science and Scopus. A two-step screening process, guided by the Wilson and Cleary model of QoL, identified 561 unique documents for analysis. Descriptive metrics included publication trends, citations, journal impact factors, and geographic distribution, while network analysis explored co-authorship patterns. Thematic mapping was conducted using clustering algorithms to identify established and emerging research areas.</p><p><strong>Results: </strong>Publication output rose steadily from 2019 to 2022, peaking at 163 publications before declining to 135 in 2023, accompanied by a reduction in average citations per document from 4.8 to 1.3. The majority of publications appeared in leading journals such as Quality of Life Research (n = 128), Journal of Patient-Reported Outcomes (n = 17), and BMJ Open (n = 15). Geographic analysis revealed that most contributors were from high-income countries, with the United States, Canada, and Australia accounting for over 50% of publications. Co-authorship network analysis highlighted a robust, interconnected cluster of authors, though opportunities remain to enhance global partnerships, particularly with low- and middle-income countries. Thematic analysis identified well-established areas, including psychometric validation and cancer, alongside emerging topics such as mixed methods in QoL research.</p><p><strong>Conclusion: </strong>This study highlights robust collaborations among NI-SIG members while identifying opportunities to enhance international collaboration and methodological innovation. Expanding partnerships with underrepresented regions and embracing advanced technologies such as natural language processing could foster inclusivity and drive transformative advancements in QoL measurement and application.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"9 1","pages":"54"},"PeriodicalIF":2.4,"publicationDate":"2025-05-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12078741/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143989587","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Psychometric validation of the Spanish for Ecuador Family Reported Outcome Measure (FROM-16) and its application to measure impact on family members of patients with skin diseases.","authors":"Andrea Cueva, Faraz M Ali, Jeffrey Johns, Andrew Y Finlay, Sam Salek","doi":"10.1186/s41687-025-00866-5","DOIUrl":"https://doi.org/10.1186/s41687-025-00866-5","url":null,"abstract":"<p><strong>Background: </strong>The Family Reported Outcome Measure (FROM-16) is a generic tool to measure the impact of health conditions on patients' family members and partners (FMs). This study aimed to translate, validate, evaluate, and implement FROM-16 in Ecuadorian Spanish and to assess the quality of life (QoL) of FMs of patients with skin diseases.</p><p><strong>Methods: </strong>A cross-sectional study of patients and their FMs was performed using FROM-16 and a five-point-Likert scale to evaluate patient´s skin health by the FM and physician. Construct validity, confirmatory factor analysis and item response modelling of FROM-16 were assessed.</p><p><strong>Results: </strong>195 FMs completed Ecuadorian FROM-16. Inter-item correlation was 0.40 and factor analysis confirmed the original two-factor model: Cronbach's alpha 0.89, with factor loadings of 0.44-0.76. Mean age of patients = 41.8 ± 31.1 years and of FMs = 47.3 ± 7; diseases were classified as inflammatory (n = 88) or non-inflammatory (n = 107). The mean FROM-16 score was 12.5 ± 7 meaning \"a moderate effect on QoL;\" however, scores of 29.2% (57 of 195) indicated a \"very large\" (n = 47) or \"extremely large\" (n = 10) effect. Populations with the highest burden were adult children main carers, not cohabiting with their sick parents (mean FROM-16 = 17 ± 7.7, n = 8, p = 0.05 versus those cohabiting), and FM of patients with inflammatory conditions (mean = 14 ± 6.9, n = 88, p = 0.006 versus those with non-inflammatory dermatoses).</p><p><strong>Conclusion: </strong>The FROM-16 is a succinct, well-structured two-domain instrument. It can be used to identify the largely overlooked impact on FMs of dermatology patients. Understanding this impact may contribute to better holistic care, inform physicians' decisions, and encourage further support for families.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"9 1","pages":"51"},"PeriodicalIF":2.4,"publicationDate":"2025-05-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12064521/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144051045","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}