Journal of Patient-Reported Outcomes最新文献

{"title":"A head-to-head comparison of the adult EQ-5D-5L and youth EQ-5D-Y-5L in adolescents with idiopathic scoliosis.","authors":"Joshua M Bonsel, Charles M M Peeters, Max Reijman, Tim Dings, Joost P H J Rutges, Diederik H R Kempen, Jan A N Verhaar, Gouke J Bonsel","doi":"10.1186/s41687-025-00842-z","DOIUrl":"https://doi.org/10.1186/s41687-025-00842-z","url":null,"abstract":"<p><strong>Background: </strong>Multiple diseases, such as Adolescent Idiopathic Scoliosis (AIS), present at adolescent age and the impact on quality of life (QoL) prolongs into adulthood. For the EQ-5D, a commonly used instrument to measure QoL, the current guideline is ambiguous whether the youth or adult version is to be preferred at adolescent age. To assess which is most suitable, this study tested for equivalence along predefined criteria of the youth (EQ-5D-5L) and adult (EQ-5D-Y-5L) version in an adolescent population receiving bracing therapy for AIS.</p><p><strong>Methodology: </strong>107 adolescents were recruited from 4 scoliosis centers in the Netherlands between March 2022 and January 2023; they completed both EQ-5D's and the SRS-22r (scoliosis-specific questionnaire). The following criteria were evaluated using the individual and sum of domains (level-sum-score (LSS)). Our primary criterion for non-equivalence of the EQ-5D's was less than excellent (≤ 0.9) intra-individual agreement using Intraclass Correlation Coefficient (ICC) analysis for LSS and weighted (quadratic) kappa for domains. Secondary criteria were differences in ceiling using McNemar test; a different number of quantified hypotheses for construct validity achieved using the SRS-22r as comparator; differences in test-retest reliability by comparing ICC/kappa values using a Z-test.</p><p><strong>Results: </strong>Adolescents had a mean age of 14 years (range 12-18), and 78% were female. Ceiling was mostly comparable between EQ-5D's, ranging from 78 to 81% for mobility and self-care, 52-54% for usual activities, and 31-36% for pain/discomfort. The EQ-5D-5L showed more ceiling (57%) compared to the EQ-5D-Y-5L (41%) on anxiety/depression (p = 0.006). Agreement between the EQ-5D's did not meet our criterion for the LSS (ICC 0.79 (95% confidence interval 0.70-0.85)), and decreased further at the domain-level. Both EQ-5D's achieved 5/7 validity hypotheses. Test-retest reliability was slightly better for EQ-5D-5L LSS (ICC 0.76 (0.64-0.84)) compared to EQ-5D-Y-5L LSS (ICC 0.69 (0.55-0.79)), although this was statistically insignificant (p = 0.284). This pattern was similar for most domains.</p><p><strong>Conclusions: </strong>The EQ-5D versions showed insufficient agreement, and cannot be considered fully equivalent. While they were similar in terms of validity and test-retest reliability, differences in score distribution were present. Taken together, we advise using the EQ-5D-5L to monitor the QoL in adolescent patients with AIS, as it avoids switching instruments and thus data discontinuities. Future studies should verify these findings in different patient groups and the general population.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"9 1","pages":"13"},"PeriodicalIF":2.4,"publicationDate":"2025-01-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143060848","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Development of the PRECIOUS Short-Form (PRECIOUS-SF) quality of care measure for children with serious illnesses.","authors":"Felicia Jia Ler Ang, Yin Bun Cheung, Mihir Gandhi, Rahul Malhotra, Truls Ostbye, Chetna Malhotra, Cristelle Chu-Tian Chow, Poh Heng Chong, Zubair Amin, Teresa Shu Zhen Tan, Eric Finkelstein","doi":"10.1186/s41687-025-00844-x","DOIUrl":"10.1186/s41687-025-00844-x","url":null,"abstract":"<p><strong>Background: </strong>Rising number of children with complex medical conditions necessitate regular healthcare quality evaluation to achieve optimal outcomes. To address the need for a periodic and quick assessment of quality of care in serious childhood illnesses, we developed a short version of previously validated 45-item PaRental Experience with care for Children with serIOUS illnesses (PRECIOUS) measure.</p><p><strong>Methodology: </strong>PRECIOUS was administered by parents of children living with serious illnesses at two time-points (baseline and two weeks) in an online survey. PRECIOUS Short-Form (PRECIOUS-SF) items were derived from the full PRECIOUS measure, which comprises five scales, using an exploratory factor analysis and best subset regression. The measurement properties of PRECIOUS-SF scales were assessed using the concurrent validity using Pearson correlation (r) with the PRECIOUS scales, internal consistency (Cronbach's α) within each scale, convergent validity with overall QoC rating, and test-retest reliability (intraclass correlation coefficient, ICC) between baseline and two-week responses.</p><p><strong>Results: </strong>PRECIOUS-SF included 10 items across four scales - (1) access to financial and medical resources (2), collaborative and goal-concordant care (3), caregiver support and respectful care and (4) reduction of caregiving stressors. A fifth and optional scale was suggested for hospitalization-specific processes. PRECIOUS-SF scales correlated strongly with corresponding PRECIOUS scales (r = 0.91 to 0.98) and demonstrated satisfactory internal consistency (α = 0.77 to 0.91) and test-retest reliability (ICCs > 0.70).</p><p><strong>Conclusions: </strong>PRECIOUS-SF demonstrated internal consistency, convergent validity, test-retest reliability, and concurrent validity with PRECIOUS. PRECIOUS-SF offers a practical tool for routine quality of care assessment in pediatric serious illnesses for promoting timely service evaluation and quality improvement.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"9 1","pages":"12"},"PeriodicalIF":2.4,"publicationDate":"2025-01-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11759730/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143042281","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":"Patient-centered outcomes for clinical trials in chronic rhinosinusitis with or without nasal polyps and allergic fungal rhinosinusitis.","authors":"Brittany Klooster, Kaitlin Chatterton, Nazifa Ibrahim, Madison C Bernstein, Alan L Shields, Veleka Allen","doi":"10.1186/s41687-024-00833-6","DOIUrl":"10.1186/s41687-024-00833-6","url":null,"abstract":"<p><strong>Background: </strong>Chronic rhinosinusitis (inclusive of subtypes with nasal polyps [CRSwNP], without nasal polyps [CRSsNP], and allergic fungal rhinosinusitis [AFRS]) causes inflammation of the nose mucosa and paranasal sinuses. Unfortunately, evidence supporting use of clinical outcome assessments (COAs) in regulated clinical trials to assess key measurement concepts of these conditions is limited.</p><p><strong>Objective: </strong>To identify key disease-related symptoms and impacts, potential outcomes of interest for new treatments, and COAs available to measure those outcomes among adult and adolescent individuals living with CRSwNP, CRSsNP, and AFRS.</p><p><strong>Methods: </strong>Literature, clinical trial, and product label reviews were conducted to identify symptoms, impacts, and COAs used to assess CRSwNP, CRSsNP, and AFRS patient experiences in clinical trials. The disease related concepts identified in the literature were mapped to selected COAs to determine conceptual coverage of each COA.</p><p><strong>Results: </strong>Twenty-five articles, twenty-five clinical trial records, and four product labels were included in the review. Across conditions, nasal obstruction, nasal discharge, and altered smell were the most frequently identified symptoms. The most frequently identified impacts of CRSwNP and CRSsNP were on emotional functioning and sleep, and adopting new behaviors for AFRS. Findings for key symptoms and impacts in adolescents were limited. More than 20 COAs used in these conditions were identified, and 14 COAs (e.g., Sinonasal Outcome Test [SNOT-22]) were evaluated for conceptual coverage of the concepts identified in the literature.</p><p><strong>Conclusion: </strong>Results specify several symptom and impact outcomes, that if improved, would reflect treatment benefit for patients living with CRSwNP, CRSsNP, and/or AFRS. Several COAs demonstrated coverage of key measurement concepts and warrant further evaluation for use in clinical trials.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"9 1","pages":"11"},"PeriodicalIF":2.4,"publicationDate":"2025-01-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11757837/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143025096","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":"High fatigue levels among psychiatric outpatients - the validity of the Danish Patient Reported Outcomes Measurement Information System Fatigue Short-Form (PROMISF-SF).","authors":"Ragnar Klein Olsen, Sidse M Arnfred, Christina Madsen, Oliver Rumle Hovmand","doi":"10.1186/s41687-025-00837-w","DOIUrl":"10.1186/s41687-025-00837-w","url":null,"abstract":"<p><strong>Background: </strong>Patient Reported Outcomes Measurement Information System Fatigue Short-Form (PROMIS-F-SF) is a self-administered, patient reported outcome (PRO) designed to assess fatigue in healthy and clinical populations and for tracking progress during treatment for disorders complicated with fatigue.</p><p><strong>Methods: </strong>Patients in the Mental Health Service Outpatient Clinics and healthy volunteers were invited to complete a survey, which included the Danish translation of the PROMIS-F-SF, the Chalder Fatigue Scale (CFS-11), and measures of depression and anxiety. We conducted a confirmatory factor analysis of the previously suggested single-factor structure of the instrument. We furthermore evaluated the construct validity of the PROMIS-F-SF by means of its relationship with the CFS-11. Finally, we evaluated the utility of the PROMIS-F-SF to identify patient-status by conducting receiver operating characteristic curves.</p><p><strong>Results: </strong>70 healthy volunteers and 62 patients completed the instruments. The PROMIS-F-SF had a average fit to the previously reported single-factor structure. Cronbach's alpha and McDonald's omega showed good internal reliability (α = 0.96, ωtotal = 0.97). PROMIS-F-SF score was positively correlated with the CFS-11 (r =.76) and it correlated highly with depression (r =.78) and anxiety (r =.74) score. The optimal cut-off point in the ROC-analyses was 15, which yielded a sensitivity of 89% and a specificity of 67% in the prediction of patient status.</p><p><strong>Conclusions: </strong>Level of fatigue among psychiatric outpatients is high in patients with psychiatric illness, compared to levels measured in healthy volunteers. The Danish PROMIS-F-SF shows good psychometric properties in this combined sample of healthy adults and psychiatric patients with non-psychotic disorders and it is recommended as PRO measure for psychiatric populations. Examination of psychometric properties in patient populations with somatic disorder could be a natural next step.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"9 1","pages":"10"},"PeriodicalIF":2.4,"publicationDate":"2025-01-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11751349/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143012844","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":"First-time use of electronic patient-reported outcome measures in a cluster randomized trial: a qualitative study.","authors":"Terese Solvoll Skåre, Tonje Lundeby, Jo Åsmund Lund, Marianne Jensen Hjermstad, May Helen Midtbust","doi":"10.1186/s41687-025-00840-1","DOIUrl":"10.1186/s41687-025-00840-1","url":null,"abstract":"<p><strong>Background: </strong>Although there is clear evidence supporting the beneficial effects of regularly assessing patient-reported outcomes (PROs), the comprehensive integration of patient-reported outcome measures (PROMs) into routine cancer care remains limited. This study aimed to explore the facilitators and barriers encountered by principal investigators (PIs) (oncologists) and study nurses during the implementation of the Eir ePROM within a cluster randomized trial (c-RCT) in cancer outpatient clinics. Additionally, we sought to examine the influence of Eir on the working routines of the participants.</p><p><strong>Methods: </strong>Individual semi-structured interviews and a focus group were conducted with nine oncologists and study nurses involved in the implementation of the ePROM tool Eir. Interviews elucidated their experiences of barriers and facilitators when implementing Eir through a cluster randomized trial. Data were analysed according to Framework Analysis, using both an inductive and deductive approach. The Consolidated Framework for Implementation Research (CFIR) was used in the deductive stages of analysis.</p><p><strong>Results: </strong>Three overarching themes were identified from the data: (1) Willingness to invest; accepting that new eras come with a cost, (2) Management anchoring; changes start at the top, and (3) Creation of a cohesive framework; fostering collective comprehension. We found a notable disparity between oncologists and nurses in their willingness to invest time and effort in implementing the tool. While participants recognized the need to transform patient consultation methods to benefit from digital symptom management, opinions varied on whether the potential benefits justified the associated cost. Furthermore, the degree of management anchoring at various levels significantly impacted the implementation process. At the local level, it was seen as either a facilitator or a barrier, influencing the outcome of the implementation. Additionally, establishing a cohesive framework was crucial, as this fostered a collective understanding among those involved in the implementation.</p><p><strong>Conclusions: </strong>Our study underscores the importance of considering the diverse perspectives of health care professionals and fostering interprofessional collaboration for the successful implementation of ePROMs in healthcare settings. Future research should explore strategies to bridge professional disparities and promote a shared understanding of the value provided by ePROMs.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"9 1","pages":"9"},"PeriodicalIF":2.4,"publicationDate":"2025-01-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11746995/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143012644","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 psychometric evaluation of the Serbian Ankylosing Spondylitis Quality of Life (ASQoL) Questionnaire (refers to r-axSpA) and its relations with disease activity and functional status indices.","authors":"Mirjana Zlatkovic-Svenda, Ana Djokic, Andjela Perunicic, Marija Zdravkovic, Slavica Pavlov Dolijanovic, Jeanette Thorpe, Dejan Dudok, Jelena Milicevic, Dejana Petrovic, Goran Radunovic","doi":"10.1186/s41687-025-00838-9","DOIUrl":"10.1186/s41687-025-00838-9","url":null,"abstract":"<p><strong>Objectives: </strong>To translate, cross-culturally adapt and validate the Serbian Ankylosing Spondylitis Quality of Life (ASQoL) questionnaire, e.g. according to the new nomenclature Radiographic-Axial Spondyloarthritis (r-axSpA), and to relate it to disease activity and functional status domains.</p><p><strong>Methods: </strong>Four stages were accomplished: (1) Bilingual and lay panel for translation and cross-cultural adaptation (2) Cognitive debriefing interviews (assessing the language and cultural equivalence of the concepts used in the Serbian ASQoL translation) for face and content validity (3) Psychometric evaluation: (a) convergent validity by NHP as a comparator scale and (b) known group validity by correlations with disease activity and overall health status and reliability (internal consistency and test-retest reliability) (4) Independent regression analyses for relations between ASQoL and ASDAS, BASDAI, BASFI, Schober's test, respiratory index and SPARCC were used. The statistical program SPSS (version 21; IBM, Armonk, NY, USA) was used.</p><p><strong>Results: </strong>The bilingual panel made a unified version of the translated documents, a lay panel confirmed the clarity of the questionnaire. Cognitive debriefing interviews with 10 patients evaluated the Serbian ASQoL as clear, precise, easy to complete. The psychometric properties with 60 randomly selected patients showed good convergent validity between ASQoL and NHP domains of pain (r = 0.79), emotional reactions (r = 0.78), physical activity (r = 0.77) and energy (r = 0.75). The internal reliability was 0.95 and 0.91 (1st and 2nd administration), respectively, and the test-retest reliability was 0.84. Regression analyses showed highly significant relationships (p < 0.001) between ASQoL and ASDAS (R²=0.403), BASDAI (R²=0.564) and BASFI (R²=0.444).</p><p><strong>Conclusion: </strong>The Serbian ASQoL demonstrated good psychometric properties and significant relationships with disease activity and functional status and is recommended for quality of life assessment in Serbian-speaking ankylosing spondylitis (radiographic axial spondyloarthritis) patients, both in clinical practice and clinical research.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"9 1","pages":"8"},"PeriodicalIF":2.4,"publicationDate":"2025-01-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11735697/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142985013","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":"Patient-reported outcomes of zirconia dental implants: a systematic review and future directions.","authors":"Behrouz Arefnia, Omid Fakheran, Norbert Jakse, Michael Payer","doi":"10.1186/s41687-025-00839-8","DOIUrl":"10.1186/s41687-025-00839-8","url":null,"abstract":"<p><strong>Purpose: </strong>Zirconia dental implants show excellent biocompatibility and tissue integration, low affinity for plaque, and favorable biomechanical properties. However, these objective measures do not adequately replicate the patient's perception. This systematic review evaluated the evidence on patient-reported outcome (PROs) in zirconia dental implant treatment.</p><p><strong>Methods: </strong>A systematic literature review was conducted following the PRISMA guidelines, utilizing six electronic databases, and supplemented by a manual search of relevant journals and websites to ensure a thorough and comprehensive screening process. The identified studies were subjected to preidentified inclusion criteria. Only controlled clinical trials published in English were considered without limitations on the year of publication. Data on the study characteristics (follow-up, survival rate (%), implant system, number of implants, and type of treatment), PROMs, level of evidence, and Methodological Index for Nonrandomized Studies (MINORS) Bias Score were extracted.</p><p><strong>Results: </strong>The initial database and hand search yielded 596 articles; 189 were included in the title and abstract screening after excluding the duplicates. Eighteen articles were selected based on the inclusion criteria, among which six were excluded because they did not match the research question. Thus, the final selection comprised 12 articles. Most PROMs (aesthetics, speaking, comfort, chewing ability, and general satisfaction) at prosthetic delivery revealed significantly improved average scores than those at pretreatment.</p><p><strong>Conclusions: </strong>Despite the respective limitations of the articles included in this systematic review, patients revealed high satisfaction levels with regard to zirconia dental implants. A high level of heterogeneity was observed among the instruments used for measuring the patient-reported outcomes in patients with zirconia implants, thus highlighting the need to develop specific PROMs in the future.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"9 1","pages":"7"},"PeriodicalIF":2.4,"publicationDate":"2025-01-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11732800/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142980132","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":"Development of a brief screening measure of unmet supportive care needs (SCNS-P&C-6) in caregivers of people with high-grade glioma.","authors":"Jill Chen, Joanne M Shaw, Haryana M Dhillon, Georgia K B Halkett, Emma McDougall, Anna K Nowak, Rachel Campbell","doi":"10.1186/s41687-024-00835-4","DOIUrl":"10.1186/s41687-024-00835-4","url":null,"abstract":"<p><strong>Purpose: </strong>Informal caregivers of people with high grade glioma (HGG) often have high levels of unmet support needs. Routine screening for unmet needs can facilitate appropriate and timely access to supportive care. We aimed to develop a brief screening tool for HGG caregiver unmet needs, based on the Supportive Care Needs Survey-Partners & Caregivers (SCNS-P&C).</p><p><strong>Methods: </strong>Secondary analysis was performed on responses to the SCNS-P&C from 188 HGG caregivers, who participated in the Care-IS trial. SCNS-P&C items were assessed against four criteria: factor loadings; prevalence; variation in domain score; diagnostic accuracy. Supplementary analysis was conducted at two timepoints (T1 & T2) on the final selected items to identify caregivers indicating no needs on the screening items but reported a need on the original SCNS-P&C, suggesting they would be \"missed\" by the screening items.</p><p><strong>Results: </strong>Six items performed best against psychometric criteria, capturing two domains: Cancer impact needs and Information and communication needs. Supplementary analysis showed screening items failed to identify only 7.4% (14/188) of caregivers with other unmet needs at T1 and 11.4% (18/158) at T2. Of those missed at T1, only four were missed again at T2.</p><p><strong>Conclusions: </strong>We identified six-items for inclusion in a brief screening tool, the SCNS-P&C-6, demonstrating good sensitivity in detecting unmet needs of caregivers of people with HGG. Use of this tool in clinical practice has the potential to improve access to care and the cancer experience for both the caregiver and person with brain tumor.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"9 1","pages":"6"},"PeriodicalIF":2.4,"publicationDate":"2025-01-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11723857/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142956228","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":"COping with Rheumatic Stressors (CORS) questionnaire: validated German translation and cross-cultural adaptation for patients with axSpA.","authors":"Kristina Vaupel, David Kiefer, Sofia Ramiro, Uta Kiltz, Wim van Lankveld, Ludwig Hammel, Xenofon Baraliakos","doi":"10.1186/s41687-024-00828-3","DOIUrl":"10.1186/s41687-024-00828-3","url":null,"abstract":"<p><strong>Background: </strong>Patients with Rheumatic and Musculoskeletal Diseases, including axial spondyloarthritis (axSpA), may suffer from stressors like pain and functional impairments leading to limitations in their self-perceived health status. The COping with Rheumatic Stressors (CORS) questionnaire was developed to analyze how patients cope with these stressors. The CORS is currently not available in German.</p><p><strong>Objective: </strong>First, to translate, cross-culturally adapt and to linguistically validate the original Dutch CORS into German. Second, to test the pre-final German translation through cognitive debriefing in patients with axSpA.</p><p><strong>Methodology: </strong>The original Dutch CORS underwent a multistep cross-cultural adaptation process, as described by Beaton. It was first independently translated into German by bilingual Dutch-German lay and expert translators. Subsequently, it was translated back from the German version into Dutch. Remaining discrepancies were resolved by a scientific committee, resulting in a pre-final German version. This version was then tested through cognitive debriefing by 10 patients with axSpA across a broad spectrum of sociodemographic backgrounds.</p><p><strong>Results: </strong>Forward and backward translations of the CORS revealed minor discrepancies, mainly based on the degree of formal versus informal language usage, minor semantic errors or unusual syntax, which led to minor modifications in the wording. Reviewed by the scientific committee, the pre-final consensus German version was linguistically validated by cognitive debriefing by 10 patients with axSpA. Cognitive debriefing confirmed and ensured closest linguistic validity for German in Germany and highest equivalence to the Dutch original version.</p><p><strong>Conclusion: </strong>The German CORS was shown to have high cross-cultural and face validity for the assessment of coping with rheumatic stressors.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"9 1","pages":"5"},"PeriodicalIF":2.4,"publicationDate":"2025-01-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11718023/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142956165","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":"Patient-reported outcome measures to assess mental and physical health status, functionality, and quality of life in patients with major depression or schizophrenia.","authors":"Luis San, Belen Arranz, Carlota Romans, Berta García, Marta Coromina, Sonia Ortiz, Miriam Vilaplana, Víctor Soto, Ruth Villaescusa, Joan Alvaros","doi":"10.1186/s41687-024-00804-x","DOIUrl":"10.1186/s41687-024-00804-x","url":null,"abstract":"<p><strong>Background: </strong>Patient-reported outcomes measures (PROMs) are standardized self-administered tools that assess the patient's opinion on the level of health, quality of life, and disability among other aspects. The objective of this study was to gather information on physical and mental health in patients with major mental illness using PROMs.</p><p><strong>Methods: </strong>This was an observational, naturalistic, prospective study carried out in adult stabilized outpatients attended at nine Adult Mental Health Centers in Barcelona, Spain. All participants had a confirmed diagnosis of major depression disorder or schizophrenia (DSM-5) and were currently on drug treatment. Participants (n = 508) self-completed a baseline questionnaire for clinical data and PROMs scales (PHQ-19, SF-12, and WHODAS 2.0) at baseline and 9 months thereafter (n = 482).</p><p><strong>Results: </strong>Mean (SD) age was 50.9 (13.2) years, and 83% of patients lived with their families. Although 93.9% of patients recognized having a mental illness, 15.7% did not know their diagnosis. When asked if they considered that during the last year their treatment had offered some type of improvement, 83.9% answered affirmatively. Patients reported that their degree of adherence to treatment was high (77%) and most of them (80%) believed the medication had a beneficial effect. Depressed patients showed both at baseline and at follow up significantly more depressive symptoms than the group with schizophrenia. In the schizophrenia group, a statistically significant improvement in depressive symptoms was noted at 9 months follow-up. We did not find significant differences within or between groups in quality of life (SF-12 scores) obtained at baseline and after 9 months of follow-up Both at baseline and at follow-up, patients with depression reported a significantly higher degree of disability (WHODAS scores) than those with schizophrenia.</p><p><strong>Conclusions: </strong>PROMs can be used in real-world conditions to assess severity of disease, quality of life, and disability in major depression and schizophrenia. The present results are relevant for both patients and clinicians.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"9 1","pages":"4"},"PeriodicalIF":2.4,"publicationDate":"2025-01-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11718024/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142956329","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}