Journal of Patient-Reported Outcomes最新文献

{"title":"Health-related quality of life among Mongolian-speaking women with breast cancer receiving adjuvant endocrine therapy in China: a cross-sectional study.","authors":"Rila Su, Claire Snyder, Laura Morlock, Albert W Wu, Alden L Gross, Jiafu Ji","doi":"10.1186/s41687-026-01101-5","DOIUrl":"10.1186/s41687-026-01101-5","url":null,"abstract":"<p><strong>Background: </strong>Breast cancer (BC) is the most common malignancy among women worldwide. Women in Mongolia, China, with BC face distinct socioeconomic and cultural barriers that may affect their health-related quality of life (HRQoL), particularly during adjuvant endocrine therapy (AET). This study assessed the HRQoL of Mongolian-speaking BC patients undergoing AET.</p><p><strong>Methodology: </strong>This descriptive, cross-sectional study included Mongolian-speaking BC patients from two hospitals in Inner Mongolia, China. Participants provided their sociodemographic and clinical information. They completed the Mongolian versions of the Functional Assessment of Cancer Therapy-Endocrine Symptoms (FACT-ES). Eastern Cooperative Oncology Group (ECOG) performance status was assessed by an oncologist during the clinical encounter and recorded for study purposes.</p><p><strong>Results: </strong>Of 215 patients approached, 200 participated and completed the questionnaires. Mean(SD) age = 55.45 ± 9.63 years; 72.5% were Stages I-II, 76% had a mastectomy, and 12% had breast-conserving surgery. Fourteen symptoms were reported by over 20% of participants. The most frequently reported were joint pain (82%), hot flashes (72%), cold sweats (61%) and mood swings (60%). Emotional well-being scores were lower than those reported in healthy females and female cancer patients, while functional well-being scores were relatively higher. Univariate analysis revealed significant differences in various subscales and overall FACT-ES scores across different characteristics, including annual income, occupational status, previous surgical procedures, cancer stage at diagnosis, and ECOG performance status (all P<.05). In multivariate regression analysis, ECOG performance status was negatively associated with most subscales and the overall FACT-ES (P<.001).</p><p><strong>Conclusions: </strong>These findings highlight the complex relationships between AET and HRQoL, as well as the specific challenges for Mongolian-speaking BC patients receiving AET in Inner Mongolia, China, underscoring the need for multidimensional approaches to improving HRQoL.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-05-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13424016/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148057247","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":"Implementation of patient-reported outcomes in personalized lung cancer care: a qualitative study from the perspective of patients and health care providers.","authors":"Vanessa Mildenberger, Dusan Simic, Leonie Eilers, Anika Kästner, Marie Naumann, Anna Rasokat, Anna Kron, Daniel Armbrust, Anna Spier, Neeltje van den Berg, Wolfgang Hoffmann, Jürgen Wolf, Florian Kron, Stephanie Stock","doi":"10.1186/s41687-026-01091-4","DOIUrl":"10.1186/s41687-026-01091-4","url":null,"abstract":"<p><strong>Background: </strong>Patient-Reported Outcomes (PROs) in personalized lung cancer care aim to facilitate a targeted therapeutic management approach. This study explores the implementation of PROs as an intervention component within a precision medicine program, with a focus on identifying facilitating factors and barriers from the perspectives of health care providers (HCPs) and patients with stage IV non-small-cell lung cancer (NSCLC).</p><p><strong>Methodology: </strong>Semi-structured individual interviews were conducted with HCPs and NSCLC patients over two rounds in 2023 and 2024, respectively. Verbatim transcripts were analyzed using qualitative content analysis. The framework of Grol and Wensing was employed, which divides healthcare into six dimensions.</p><p><strong>Results: </strong>The structured documentation of symptoms and quality of life constitutes a benefit in that it enables intervention by the treating physician. From the perspective of HCPs, incorporating PROs into daily clinical practice was associated with considerable organizational challenges and the need for logins into an additional system to access the results. This required a substantial investment of time and personnel, which resulted in a lack of acceptance. The predominant motivation of patients who participated in the PRO questionnaires was a desire to contribute to scientific research. In general, the regular administration of the questionnaire has proven unfeasible for the NSCLC cohort, given the high disease burden often experienced in stage IV.</p><p><strong>Conclusions: </strong>Despite implementation challenges, PROs can improve symptom monitoring, communication, and patient-centered care in advanced NSCLC when key barriers are addressed.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"10 1","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-05-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13219689/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148044115","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":"Asthma daytime and nighttime symptom diaries: content validity and qualitative exploration of meaningful change in patients with moderate-to-severe asthma.","authors":"Tom Keeley, Katie Forde, Hannah Elwick, Adam Gater, Sophie Lawrie, Agkreta Leventi, Rafael Alfonso-Cristancho","doi":"10.1186/s41687-026-01079-0","DOIUrl":"10.1186/s41687-026-01079-0","url":null,"abstract":"<p><strong>Background: </strong>Asthma symptom severity can be assessed using the Asthma Daytime and Nighttime Symptom Diaries (ADSD and ANSD), which provide an accurate and standardized patient-reported option for symptom assessment during different periods of the day (i.e. daytime and nighttime), as these can vary significantly. Earlier development and validation work for the ADSD and ANSD was conducted in a broad (i.e. ranging from mild to severe) asthma population, and a US Food and Drug Administration qualification statement noted the need for further evaluation of their measurement properties, including content validity. The current study, which builds upon earlier work, was designed to ensure that the ADSD and ANSD are content-valid in patients with moderate-to-severe asthma.</p><p><strong>Methodology: </strong>Qualitative semi-structured concept elicitation and cognitive debriefing interviews were conducted in adults with moderate-to-severe asthma to investigate understanding of ADSD and ANSD instructions, items, recall period, response options, and concept relevance. Changes in total and item scores that were meaningful to patients were explored. General feedback on the measures was also requested.</p><p><strong>Results: </strong>The study recruited 15 patients with moderate-to-severe asthma. Content validity findings were consistent with previous studies, supporting inclusion of six core symptoms (i.e. wheezing, cough, difficulty breathing, shortness of breath, chest tightness and chest pain) as items in the ADSD and ANSD that occur during a typical day or night and impact upon patient well-being and functioning. A high level of understanding and relevance of the diary items to patients was demonstrated; instructions were confirmed to be easy to follow. In supportive analyses, meaningful levels of improvement on the ADSD and ANSD ranged from 0.5 to 3.5 and 0.2 to 5.0 respectively. Meanwhile, meaningful levels of worsening on the ADSD and ANSD ranged from 1.0 to 5.8 and 0.5 to 6.7 respectively.</p><p><strong>Conclusions: </strong>The ADSD and ANSD are content-valid measures for the measurement of daytime and nighttime symptoms and their severity in patients with moderate-to-severe asthma. Additional confirmatory studies are required to confirm the psychometric properties of the ADSD and ANSD in a moderate-to-severe population and to quantitatively estimate the threshold for meaningful improvement and worsening.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-05-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13219637/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148044024","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, cultural adaptation, and validation of the amharic version of the Minnesota Living with Heart Failure Questionnaire (MLHFQ).","authors":"Henok Mulugeta, Peter M Sinclair, Suzanne Sheppard-Law, Amanda Wilson","doi":"10.1186/s41687-026-01089-y","DOIUrl":"10.1186/s41687-026-01089-y","url":null,"abstract":"<p><strong>Background: </strong>Heart failure has a significant impact on the health-related quality of life of affected individuals. The Minnesota Living with Heart Failure Questionnaire (MLHFQ) is one of the most widely used instruments for measuring the health-related quality of life of people with heart failure. This study aimed to translate, culturally adapt, and validate the psychometric properties of the Amharic MLHFQ among people with heart failure in Ethiopia.</p><p><strong>Methods: </strong>A hospital-based cross-sectional study was conducted among adults with heart failure attending the cardiac outpatient clinics of two tertiary-level public hospitals in Ethiopia. The health-related quality of life of these people was measured using the Amharic version of the MLHFQ. The study was conducted in two phases: translation and cultural validation, followed by psychometric testing to assess the reliability and validity of the instrument. The translation and cross-cultural adaptation process involved forward translation, synthesis, back translation, expert panel review, and pre-testing. The scale level content validity index (S-CVI) was calculated to assess content validity. The internal consistency of the tool was evaluated using reliability test, while construct validity was examined using confirmatory factor analysis (CFA).</p><p><strong>Results: </strong>A total of 383 adults with heart failure participated in the study. The scale-level content validity index (S-CVI) was 0.87, indicating good content validity. The Cronbach's α coefficient for the Amharic version of the MLHFQ was 0.90, demonstrating strong internal consistency. Confirmatory factor analysis (CFA) results revealed that the two-factor model provided an acceptable fit to the data (CFI = 0.92, RMSEA = 0.10, SRMR = 0.10, χ² = 278.047, p < 0.001). There were significant differences in MLHFQ scores across age groups, depression status, New York Heart Association (NYHA) class and social support levels.</p><p><strong>Conclusion: </strong>The Amharic version of the MLHFQ demonstrated good reliability and acceptable validity, supporting its use as a culturally appropriate tool for assessing the health-related quality of life of Amharic-speaking Ethiopian people with heart failure. Health care providers can use this tool in both clinical practice and research settings to better evaluate and monitor patient-reported outcomes. Future research is recommended to confirm and strengthen the findings of this study.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-05-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13424004/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148036078","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":"A clustering-based approach to characterize autonomy profiles among multiple sclerosis patients: an application of the Qluster method in the FOCAL-MS2 study.","authors":"David Pau, Alexandre Civet, Cécile Donzé, Géraud Paillot, Claude Mekies, Mikael Cohen, Lucie Brechenmacher, Catherine Mouzawak, Patrick Vermersch, Cyril Esnault, Svetlana Le Ralle","doi":"10.1186/s41687-026-01074-5","DOIUrl":"10.1186/s41687-026-01074-5","url":null,"abstract":"<p><strong>Background and objectives: </strong>Many Multiple Sclerosis (MS) patients have symptoms that impact on their autonomy, defined as being able to perform the roles that are most important to oneself, with or without help. This research aimed to identify distinct phenotypic autonomy profiles among People with MS (PwMS) and evaluate their 1-year longitudinal trajectories using the newly developed 10-dimension Multiple Sclerosis Autonomy Scale (MSAS).</p><p><strong>Methods: </strong>Data were drawn from the prospective, non-interventional FOCAL-MS2 study following 199 PwMS in France over 12 months. To uncover patient profiles, we applied an unsupervised clustering method using clinical and social parameters at baseline. Cluster stability was validated via bootstrap resampling and the Jaccard similarity index. Within-patient 1-year changes in MSAS subscales were evaluated against a Minimum Clinically Important Difference (MCID) threshold.</p><p><strong>Results: </strong>The analysis yielded six highly stable patient clusters (Jaccard indices ranging from 0.90 to 0.98). Cluster 1 (n = 30) comprised middle-aged patients on sick leave who were severely impacted regarding activities with others. Cluster 2 (n = 42) was characterized by a younger population (40-49 years) requiring occasional walking assistance. Cluster 3 (n = 42) consisted of middle-aged patients who maintained high levels of personal activities. Cluster 4 (n = 30) represented the oldest (≥60 years) and most disabled group at baseline; paradoxically, this subgroup showed an improvement in autonomy across most dimensions over the year. Finally, Cluster 5 (n = 19, without activities) and Cluster 6 (n = 36, professionally active women) both represented younger patients (<40 years) exhibiting high functional autonomy at baseline.</p><p><strong>Conclusion: </strong>Our study identified six unique clusters that differ not only in their baseline symptom burden but also in their 1-year trajectory of autonomy. This underlines the necessity to address specific socio-professional and psychosocial dimensions of autonomy unique to each patient's profile.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-05-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13396066/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148017823","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 and research benefit and burden in siblings of children with life-limiting conditions: a prospective multicentre cohort study.","authors":"Anne-Kathrin Gerber, Karin Zimmermann, Michèle Widler, Michael Simon, Nicolas von der Weid, Stefan Mitterer, Eva Bergsträsser","doi":"10.1186/s41687-026-01096-z","DOIUrl":"10.1186/s41687-026-01096-z","url":null,"abstract":"<p><strong>Background: </strong>Siblings of children suffering from a life-limiting condition (LLC) may experience impaired psychological and social well-being and strained family functioning. Due in part to concerns about research burden, evidence on siblings' quality of life (QoL) remains limited. This study aimed to examine longitudinal changes in QoL among well siblings of children with a (LLC) during the palliative care and bereavement phases, and to assess their perceived benefits and burdens of research participation.</p><p><strong>Methodology: </strong>This prospective multicentre cohort study was conducted within the SPhAERA project. Data were collected using paper-and-pencil questionnaires at predefined care and bereavement time points. QoL was assessed using the KIDSCREEN-52 instrument, and perceived research benefit and burden were measured using eight self-developed items. Analyses were primarily descriptive. Siblings aged 8-18 years were recruited from three Swiss University Children's hospitals between November 2019 and May 2022.</p><p><strong>Results: </strong>Twelve siblings participated. QoL scores were above the Swiss normative values across all domains except psychological well-being. QoL varied over time in all participants. The median research burden score was 1.4 (scale from 0 to 10), and no consistent benefits or burdens were reported.</p><p><strong>Conclusions: </strong>Care for children with a (LLC) should include screening to identify siblings with low QoL and increased support needs. Further research is required to examine factors influencing QoL and its fluctuations across the palliative and bereavement phases, in order to inform targeted support strategies.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-05-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13385311/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148006966","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 instruments in pediatric disorders of gut-brain interaction: a COSMIN-based systematic review.","authors":"Zehui Zhao, Yueyue Chen, Huiyu Zeng, Yuqi Fang, Siyuan Hu","doi":"10.1186/s41687-026-01093-2","DOIUrl":"10.1186/s41687-026-01093-2","url":null,"abstract":"<p><strong>Background: </strong>Functional gastrointestinal disorders, now referred to as disorders of gut-brain interaction (DGBI), impose substantial functional and psychosocial burdens on affected children and their families. Health-related quality of life (HRQoL) has become an important patient-reported outcome in this field. This review aimed to systematically evaluate the measurement properties of instruments used to assess HRQoL in pediatric DGBI.</p><p><strong>Methods: </strong>A systematic review was conducted following the COSMIN methodology. PubMed, Embase, and Web of Science were searched from database inception to Oct 23, 2025. Studies evaluating the measurement properties of patient-reported outcome measures assessing HRQoL in children aged 0-18 years with disorders of gut-brain interaction were included.</p><p><strong>Results: </strong>14 studies evaluating nine health-related quality of life instruments were included. These comprised four generic instruments (PedsQL 4.0, EQ-5D-Y, CHU-9D, and the PedsQL Family Impact Module) and five disease-specific instruments (PedsQL Gastrointestinal Symptoms Scales, PedsQL Gastrointestinal Worry Scales, Infant Colic Questionnaire, PedFCQuest-PR, and the Defecation Disorder List). The instruments were evaluated across six pediatric DGBI subtypes: cyclic vomiting syndrome, infant colic, functional dyspepsia, irritable bowel syndrome, functional abdominal pain-not otherwise specified, and functional defecation disorders.</p><p><strong>Conclusion: </strong>Among generic instruments, PedsQL 4.0 has the most comprehensive supporting evidence and can be used when a broad assessment of health status is required. Disease-specific instruments, particularly the PedsQL Gastrointestinal Symptoms Scales and the PedsQL Gastrointestinal Worry Scales, align more closely with gastrointestinal-related impacts and may be better suited for evaluating DGBI-related outcomes. Evidence for several measurement properties remains incomplete, especially for structural validity and responsiveness. More systematic evaluation of these instruments will help improve outcome measurement and strengthen the interpretation of treatment effects in pediatric DGBI.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-05-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13381409/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147989332","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":"Validity, reliability, and longitudinal measurement properties of the Asthma Daytime and Nighttime Symptom Diaries in patients with moderate-to-severe asthma.","authors":"Tom Keeley, Dara O'Neill, Vita Dikariyanto, Gerasimos Dumi, Piper Fromy, Fedor Markov, Anna Richards, Rafael Alfonso-Cristancho","doi":"10.1186/s41687-026-01066-5","DOIUrl":"10.1186/s41687-026-01066-5","url":null,"abstract":"<p><strong>Background: </strong>The Asthma Daytime and Nighttime Symptom Diaries (ADSD and ANSD) were developed to provide an accurate and standardized instrument for assessing patient-reported severity of asthma symptoms. While previous evidence supports the content validity and cross-sectional measurement properties of the ADSD and ANSD, the US Food and Drug Administration (FDA) qualification statement for these tools recommended further evaluation of their longitudinal measurement properties and the interpretation of within-patient meaningful change (WPMC). Therefore, two complementary studies were designed to assess cross-sectional and longitudinal measurement properties and estimate thresholds for WPMC for the ADSD/ANSD in patients with moderate-to-severe asthma, responding to measurement gaps identified in the FDA statement.</p><p><strong>Methodology: </strong>Quantitative evaluation of ADSD/ANSD (score range 0 to 10) measurement properties was performed in a real-world observational study (RWS; ≥16 years old; moderate-to-severe asthma) and a randomized controlled trial (RCT; ≥12 years old; severe asthma with type 2 inflammation). Cross-sectional and longitudinal measurement properties were assessed and WPMC thresholds estimated.</p><p><strong>Results: </strong>A total of 576 patients with moderate-to-severe asthma were recruited across both studies. The RWS (n = 241) and RCT (n = 335) both found the ADSD/ANSD to have high internal consistency and test-retest reliability with Cronbach's α-coefficients ≥0.94 and intraclass correlation coefficients ≥0.90. Evidence in support of the unidimensional scoring solution for both the ADSD and ANSD was established via confirmatory factor analysis across timepoints and studies, and evidence of construct validity was demonstrated via convergent and known-groups validity testing. In the blinded RCT analysis, the threshold for WPMC was estimated at 1.2 for the ADSD and 1.5 for the ANSD. In the RWS, the WPMC threshold for within-patient improvement was estimated to be from 0.6 to 1.3 for ADSD and from 0.8 to 1.4 for ANSD across 6- and 10-week intervals.</p><p><strong>Conclusions: </strong>This study directly addresses the evidence gaps identified by the FDA, demonstrating that the ADSD and ANSD are reliable and valid tools for the measurement of daily symptoms in patients with moderate-to-severe asthma, and are capable of detecting WPMC. Values derived from the RCT analysis support a recommendation for thresholds for meaningful within-patient change of 1.2 and 1.5 for the ADSD and ANSD, respectively.</p><p><strong>Clinical trial registration: </strong>GSK ID: 217640; NCT04719832.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-05-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13219701/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147976058","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 the long COVID - 6 dimensions quality of life (LC-6D-QoL) scale: a Delphi study.","authors":"Esther Ortega-Martin, Javier Alvarez-Galvez","doi":"10.1186/s41687-026-01084-3","DOIUrl":"10.1186/s41687-026-01084-3","url":null,"abstract":"<p><strong>Background: </strong>Long COVID significantly impairs quality of life through multi-systemic complexity, including fatigue, cognitive dysfunction, and dysautonomia. Existing generic tools fail to capture these manifestations, limiting patient-centered assessment. To address this gap, this study proposed a patient-focused, 16-item scale developed and content-refined through expert consensus, to evaluate quality of life in people with Long COVID.</p><p><strong>Methods: </strong>A two-round Delphi study involved two rounds of questionnaires and feedback. 37 experts with clinical or research experience in Long COVID participated in the first round, and 26 completed the second. In the first round, experts rated the relevance of proposed indicators. The second questionnaire incorporated modifications based on the experts' comments. Quantitative data were analyzed using descriptive statistics and agreement measures, while qualitative comments were thematically coded.</p><p><strong>Results: </strong>Experts reached substantial agreement, above 83%, on the dimensions covering the main aspects of quality of life. Based on participants' comments, the initial scale was modified, and a consensus between 80 and 92% was reached in all dimensions. The Delphi process resulted in a scale composed of 6 dimensions and 16 items, which include dysautonomia assessment and affective-sexual life impact, omitted in generic tools. The dimensions of the LC-6D-QoL Scale were: (1) general health; (2) physical health; (3) mental health; (4) daily functioning; (5) social relationships and support; and (6) economic and work-related aspects.</p><p><strong>Conclusions: </strong>This study establishes an expert-informed foundation for future validation of the LC-6D-QoL Scale, integrating clinical and experiential knowledge to refine its preliminary structure. The LC-6D-QoL Scale is a patient-centered instrument capturing six key dimensions often missed in generic tools-such as dysautonomia, mental fatigue, and work-related impact-to better assess quality of life in Long COVID.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-05-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13421521/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147976053","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 latent difference score model is a viable alternative to arithmetic difference score-based anchor-driven minimal important change calculation.","authors":"Levent Dumenci, Daniel L Riddle","doi":"10.1186/s41687-026-01085-2","DOIUrl":"10.1186/s41687-026-01085-2","url":null,"abstract":"<p><strong>Background: </strong>Traditional MIC estimates contain measurement error from PROMs. The LDSM offers a viable alternative to estimate MIC controlling for measurement error. We also propose a conceptual framework for considering the multiple steps necessary to calculate anchor-based MICs.</p><p><strong>Methodology: </strong>Data from KASTPain, a no-effect multi-center randomized clinical trial of 364 participants with knee osteoarthritis and who underwent knee arthroplasty, were used to illustrate the LDSM to estimate MIC. Based on a structural equation modeling framework, we used LDSMs to estimate MICs of three commonly used patient-reported outcomes of pain and functional status.</p><p><strong>Results: </strong>We reported nine MIC estimates, three PROMs crossed with three post-intervention measurement occasions, from the LDSM. Results from the receiver operating curve analysis indicated that the area under curve was high (median: 0.88 range: 0.77-0.90) for all analyses.</p><p><strong>Conclusions: </strong>Latent variable modeling of PROM change excludes PROM measurement error and may offer advantages over more traditional forms of MIC estimation.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-05-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13369083/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147983714","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}