Rila Su, Claire Snyder, Albert W Wu, Alden L Gross, Jiafu Ji, Jiaming Zhang, Laura Morlock
{"title":"A systematic review of patient-reported outcome measures (PROMs) to assess health-related quality of life (HRQoL) for breast cancer patients who are undertaking adjuvant endocrine therapy.","authors":"Rila Su, Claire Snyder, Albert W Wu, Alden L Gross, Jiafu Ji, Jiaming Zhang, Laura Morlock","doi":"10.1007/s11136-025-04004-y","DOIUrl":"https://doi.org/10.1007/s11136-025-04004-y","url":null,"abstract":"<p><strong>Purpose: </strong>Breast cancer (BC) is the most prevalent cancer among women, with hormone receptor-positive BC making up approximately 70% of cases. Adjuvant Endocrine Therapy (AET) is critical in reducing recurrence in this patient population. Still, it often leads to side effects that negatively impact patients' health-related quality of life (HRQoL). Patient-reported outcome measures (PROMs) are widely used to assess HRQoL, but there is inconsistency in the instruments used to evaluate the impact of AET on BC patients. This systematic review aimed to identify and evaluate PROMs that assess HRQoL in BC patients undergoing AET, using the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) guidelines.</p><p><strong>Methods: </strong>A systematic search was conducted across MEDLINE, EMBASE, Cochrane Library, and Google Scholar for studies published between 2007 and 2023. Studies that developed and validated PROMs for BC patients on AET were included. The measurement properties of each PROM were appraised following COSMIN guidelines, and their relevance, comprehensiveness, and comprehensibility were assessed.</p><p><strong>Results: </strong>The review included 24 studies assessing six PROMs. The European Organization for Research and Treatment of Cancer-Breast Cancer45 (EORTC BR45) and Functional Assessment of Cancer Therapy-Endocrine Symptoms (FACT-ES) demonstrated sufficient content validity and covered the majority of AET-related symptoms. Both instruments were rated highly for structural validity, internal consistency, cross-cultural validity, and reliability. FACT-ES also demonstrated strong responsiveness to treatment-related changes.</p><p><strong>Conclusions: </strong>EORTC BR45 and FACT-ES are the most suitable PROMs for assessing HRQoL in BC patients undergoing AET due to their robust psychometric properties and comprehensive coverage of AET-related symptoms.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-06-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144326726","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Associations between dyadic coping, mutuality, and quality of life among maintenance hemodialysis patients and caregivers: an actor-partner interdependence mediation model.","authors":"Yan Liu, Zhenying Wei, Libao Jing, Zhun Sui, Pengcheng Fu, Xiurong Chen, Guiling Yu","doi":"10.1007/s11136-025-03991-2","DOIUrl":"https://doi.org/10.1007/s11136-025-03991-2","url":null,"abstract":"<p><strong>Purpose: </strong>Maintenance hemodialysis patients and their caregivers is experiencing poor quality of life. The dyadic illness management theory has linked dyadic coping and mutuality to quality of life. This study explored the effects of dyadic coping on mental/ physical quality of life and the mediating role of mutuality in these relationships among maintenance hemodialysis patients and their caregivers.</p><p><strong>Methods: </strong>A cross-sectional study was conducted with 302 patient-caregiver dyads recruited from four blood purification centers in Jinan, Qingdao, Yantai, and Zaozhuang, China, between May 2024 and November 2024. Data were collected using a sociodemographic characteristics questionnaire, the dyadic coping inventory, the mutuality scale, and the 12-item short-form health survey. Data analysis was performed using the actor-partner interdependence mediation model.</p><p><strong>Results: </strong>The findings revealed that in terms of actor effects, dyadic coping directly impacted mental and physical quality of life in maintenance hemodialysis patients and mental quality of life in caregivers (p < 0.01). The relationships were mediated through their own mutuality (p < 0.05). In terms of partner effects, caregivers' dyadic coping directly impacted maintenance hemodialysis patients' mental and physical quality of life (p < 0.05), with mutuality of both maintenance hemodialysis patients and their caregivers serving as a mediator (p < 0.05).</p><p><strong>Conclusion: </strong>The study confirms the significant dyadic relationships between dyadic coping, mutuality, and mental/ physical quality of life among maintenance hemodialysis patients and their caregivers. The findings suggest that it is essential to develop effective dyadic interventions based on dyadic coping strategies or mutuality to improve mental and physical quality of life for both members.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-06-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144317791","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Jahan Shabnam, Mette Raunkiær, Maiken Bang Hansen, Mogens Grønvold, Anders Løkke, Edina Nikolett Barna, Camilla Lykke, Tina Broby Mikkelsen, Cecilie Lindstöm Egholm
{"title":"Patients' experiences of responding to a Patient-Reported Outcome Measure for palliative care: a mixed method study.","authors":"Jahan Shabnam, Mette Raunkiær, Maiken Bang Hansen, Mogens Grønvold, Anders Løkke, Edina Nikolett Barna, Camilla Lykke, Tina Broby Mikkelsen, Cecilie Lindstöm Egholm","doi":"10.1007/s11136-025-04006-w","DOIUrl":"https://doi.org/10.1007/s11136-025-04006-w","url":null,"abstract":"<p><strong>Background: </strong>Worldwide, there is growing interest in using Patient-Reported Outcome Measures (PROM) in palliative care. The Danish Health Data Authority has developed a new PROM called PRO-Pall, which was launched for nationwide use in patients with heart, lung, and kidney diseases, as well as cancer.</p><p><strong>Aim: </strong>To explore patients' experiences of responding to the PRO-Pall and using it in a consultation about palliative care needs in non-specialised palliative care settings.</p><p><strong>Methods: </strong>This is a multicentre, mixed-methods study combining a quantitative approach using structured questionnaires (n = 270) and a qualitative analysis based on semi-structured interviews (n = 17). The quantitative survey included items assessing relevance, ease of use, and perceived benefits of PRO-Pall in preparing for consultations. Qualitative data collection involved interviews focusing on patients' experiences with PRO-Pall and its integration into clinical discussions. Quantitative data were analysed descriptively as numbers (n) and proportions (%), while qualitative data were analysed using thematically using to identify key themes.</p><p><strong>Results: </strong>A total of 270 patients completed the survey, and 17 patients participated in interviews. The analysis revealed that the patients evaluated the PRO-Pall positively. The patients strongly agreed or agreed that the PRO-Pall was relevant (85%), easy to fill out (85%), helped to become aware of symptoms (61%) and a good way to prepare for the consultation (70%). The qualitative findings further supported these results, highlighting that patients found PRO-Pall relevant, appropriate, and convenient. Participants emphasized that PRO-Pall responses should be actively discussed during consultations with healthcare professionals to enhance its impact. Additionally, they noted that the timing of completing PRO-Pall was crucial, as patients' conditions fluctuate over time, potentially influencing their responses.</p><p><strong>Conclusion: </strong>Most patients found the PRO-Pall relevant, appropriate, and easy to fill out. However, its effectiveness depends on healthcare professionals actively integrating patient responses into consultations. Otherwise, it would serve merely as documentation rather than an avenue for patients to discuss their concerns.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-06-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144294815","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Anthony Raborn, Andrea Savord, Carrie R Houts, Sheryl Pease, Kayla Scippa, Sindhu Ramchandren
{"title":"Psychometric analysis of the Neuro-QoL Fatigue in generalized Myasthenia Gravis (gMG) using data from a phase 3 trial.","authors":"Anthony Raborn, Andrea Savord, Carrie R Houts, Sheryl Pease, Kayla Scippa, Sindhu Ramchandren","doi":"10.1007/s11136-025-03998-9","DOIUrl":"https://doi.org/10.1007/s11136-025-03998-9","url":null,"abstract":"<p><strong>Objectives: </strong>To evaluate the psychometric properties of the Neuro-QoL Fatigue patient-reported outcome measure and its short form when used to assess fatigue in adults living with generalized Myasthenia Gravis (gMG).</p><p><strong>Methods: </strong>Data from Vivacity-MG3 (ClinicalTrials.gov Identifier: NCT04951622), a double-blind placebo-controlled phase 3 study of nipocalimab enrolled 196 participants living with gMG were analyzed. Psychometric analyses of Neuro-QoL Fatigue scores (19-item version and short-form version) focused on data from Baseline and the 24-week double-blind interventional phase of the trial. Factor analytic and classical test theory (CTT) analyses were performed to investigate support for intended Neuro-QoL Fatigue score use, along with convergent and discriminant relationships, known groups analyses, and sensitivity to change analyses. Thresholds to define meaningful within-person change (improvement) over time were also investigated.</p><p><strong>Results: </strong>The full form factor analytic analyses showed evidence that a unidimensional model adequately fits the data (TLI = 0.99, RMSEA = 0.07), CTT analyses showed high internal consistency (alpha = 0.95), and high test-retest reliability for stable participants (r = 0.92); similar results were observed for the short form. Both versions' scores were correlated with a variety of reference variables at expected levels, demonstrated the ability to differentiate between clinically meaningfully distinct groups, and were significantly correlated with changes in other reference variables. Analyses suggested 19-item and short-form score changes of 6.7 and 7.6, respectively, as showing meaningful improvement over time.</p><p><strong>Conclusions: </strong>Results provided robust psychometric evidence that supports the use of Neuro-QoL Fatigue scores for assessing fatigue in adults living with gMG.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-06-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144294816","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Marie Buzzi, Karen A Patte, Yan Kestens, Grégory Moullec, Laetitia Minary, Jennifer O'Loughlin, Scott T Leatherdale, Nelly Agrinier, Jonathan Epstein
{"title":"Validation of the ecological momentary well-being instrument (EMOWI) in Canadian adolescents.","authors":"Marie Buzzi, Karen A Patte, Yan Kestens, Grégory Moullec, Laetitia Minary, Jennifer O'Loughlin, Scott T Leatherdale, Nelly Agrinier, Jonathan Epstein","doi":"10.1007/s11136-025-04001-1","DOIUrl":"https://doi.org/10.1007/s11136-025-04001-1","url":null,"abstract":"","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-06-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144275828","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Jonas Dreher, Andreas Meryk, Johannes M Giesinger, Verena Schneeberger-Carta, David Riedl, Alexandra Haid, Gabriele Kropshofer, Benjamin Hetzer, Gerhard Rumpold, Bernhard Holzner, Roman Crazzolara, Jens Lehmann
{"title":"Adherence to daily electronic symptom screening in pediatric cancer: associations with time, location and pain.","authors":"Jonas Dreher, Andreas Meryk, Johannes M Giesinger, Verena Schneeberger-Carta, David Riedl, Alexandra Haid, Gabriele Kropshofer, Benjamin Hetzer, Gerhard Rumpold, Bernhard Holzner, Roman Crazzolara, Jens Lehmann","doi":"10.1007/s11136-025-04002-0","DOIUrl":"https://doi.org/10.1007/s11136-025-04002-0","url":null,"abstract":"<p><strong>Purpose: </strong>Regularly collected patient-reported outcome measures (PROMs) can facilitate early symptom detection and improve health outcomes. This explorative analysis aimed to investigate PROM adherence and factors associated with daily PROM completion among pediatric cancer patients.</p><p><strong>Methods: </strong>We analyzed data from a prospective study at the Medical University of Innsbruck in which pediatric patients with cancer treated with chemotherapy completed daily PROMs via a web-based portal (ePROtect). We analyzed the PROM adherence during their first year of treatment descriptively and using a linear mixed model to evaluate factors associated with PROM adherence.</p><p><strong>Results: </strong>Fifty patients (42% female) with a median age of 10.7 years (IQR 7.1-15.4) were included in this analysis (analysis period 05/2020 to 05/2023). The mean adherence was 48.7% (SD 27.2), with the highest adherence during the first 30 days (77.1%). Significant predictive factors for lower adherence included time in the program (logarithmic; β = -0.093, p < 0.001) and admission to the intensive care unit (β = -0.224, p < 0.001). In contrast, inpatient stays (β = 0.035, p = 0.014) and self-reported pain (β = 0.087, p = 0.002) were significant predictors for higher PROM adherence. Occurrences of adverse events were not significantly associated with adherence.</p><p><strong>Discussion: </strong>Our findings suggest that continuous daily symptom monitoring is feasible over extended periods. PROM adherence stabilized over time despite an initial drop, with higher participation observed during inpatient stays and in weeks with self-reported pain. Future research should explore and evaluate strategies to improve adherence.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-06-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144258863","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Soumana C Nasser, A Simon Pickard, Jonathan L Nazari, Maja Kuharic
{"title":"Frequency and severity response scales for pain and discomfort: psychometric insights from EQ-HWB.","authors":"Soumana C Nasser, A Simon Pickard, Jonathan L Nazari, Maja Kuharic","doi":"10.1007/s11136-025-04003-z","DOIUrl":"https://doi.org/10.1007/s11136-025-04003-z","url":null,"abstract":"","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-06-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144258864","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Carolyn E Schwartz, Katrina Borowiec, Bruce D Rapkin
{"title":"Long-COVID symptom burden and the experience of adversity: the importance of response-shift effects over 3 years of the pandemic.","authors":"Carolyn E Schwartz, Katrina Borowiec, Bruce D Rapkin","doi":"10.1007/s11136-025-03962-7","DOIUrl":"https://doi.org/10.1007/s11136-025-03962-7","url":null,"abstract":"<p><strong>Background/objectives: </strong>Long COVID is a long-term legacy of the global pandemic. This study aimed to illuminate how Long COVID impacts individuals, and how response-shift effects influence Long COVID's impact. Methodologically, it expands the application of longitudinal statistical methods to test a more dynamic investigation of psychosocial factors in health over time.</p><p><strong>Methods: </strong>This quasi-experimental longitudinal cohort study collected data up to four times over 3 years of the COVID pandemic (May 2020 to April 2023). This study focused on 1151 participants divided into four Long-COVID Symptom Burden groups (Never Had COVID; Low, Medium, and High Long-COVID Symptom Burden). It examined COVID-specific outcomes: General Hardship, Healthcare Hardship, Worry, and Social Support. The Quality of Life Appraisal Profile<sub>v2</sub>-Short Form assessed cognitive-appraisal processes. Direct and moderated response-shift effects were tested using longitudinal mixed models that examined main effects and interactions of individuals' changes in cognitive-appraisal processes from their usual, over time, and by group over time, after adjusting for sociodemographic covariates and individual's usual appraisal processes, and considering the impact of multiple comparisons.</p><p><strong>Results: </strong>Notable response-shift effects were revealed on all four COVID-specific outcomes, reflecting both direct and moderated response-shift effects. The experience of COVID-specific adversity was related to various appraisal processes but the nature of the relationship often varied by Long-COVID symptom burden. The appraisal processes that were most salient included patterns of emphasis related to getting used to and handling demands or recent changes, problem-solving goals, and comparing oneself to similar others. Individuals in the high Long-COVID Symptom-Burden Group were particularly highlighted in response-shift effects. The broad conclusions of both raw and multiplicity-adjusted results were similar. That is, there were notable reprioritization and reconceptualization response-shift effects for all outcomes, and notable but fewer recalibration response-shift effects.</p><p><strong>Conclusions: </strong>Response-shift effects, measured via the direct assessment of cognitive-appraisal processes, were prominent in dealing with the COVID pandemic. The present study documented that COVID-specific adversity can be attenuated or exacerbated depending on individuals' patterns of emphasis, goals, and standards of comparison. The study's utilization of data collected at four time points over 3 years of the global pandemic provided a more comprehensive and far-reaching evaluation of response shift than earlier work. The theory-driven analytic methodology developed in the present work facilitated a more nuanced description of direct and moderated response-shift effects.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-06-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144234951","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Sherry A Burrell, Margaret M Brace, Gabrielle E Sasso, Meredith MacKenzie Greenle
{"title":"Health-related quality of life trajectories in older adult long-term survivors of colorectal cancer.","authors":"Sherry A Burrell, Margaret M Brace, Gabrielle E Sasso, Meredith MacKenzie Greenle","doi":"10.1007/s11136-025-03986-z","DOIUrl":"https://doi.org/10.1007/s11136-025-03986-z","url":null,"abstract":"<p><strong>Purpose: </strong>The purpose of this study was to examine factors affecting health-related quality of life (HRQOL) over time in older adult survivors of colorectal cancer (CRC) and determine demographic and clinical characteristics associated with declines in HRQOL.</p><p><strong>Methods: </strong>This secondary analysis utilized the Surveillance Epidemiology and End Results and Medicare Health Outcomes Survey and included CRC survivors aged 65 or older who completed at least one survey pre-diagnosis and two surveys within ten years post-diagnosis. HRQOL was captured by the Veterans Rand 12-item scale which provides mental and physical composite scores. Group-based trajectory modeling was employed to identify HRQOL trajectories. Multinomial logistic regression predicted group membership based on demographic and clinical characteristics.</p><p><strong>Results: </strong>The cohort (n = 649) was predominantly female (58%), white (70%), with an average age of 77 years. Most participants were diagnosed at Stage I disease (56%) and underwent surgery (63%). Three groups were identified based on trajectories of MCS: low increasing, medium decreasing, and high stable. Income and comorbidity number predicted MCS group membership. Five groups were identified based on trajectories of PCS: low decreasing, medium stable, steeply decreasing, high decreasing, and high stable. Older age at diagnosis, identifying as Hispanic, and comorbidity number predicted PCS group membership.</p><p><strong>Conclusions: </strong>Comorbidities, age at diagnosis, ethnicity, and income significantly impact the HRQOL of older adult survivors of CRC. The resources and needs of each patient should be considered in long-term survivorship plans.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-06-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144226481","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Ivan Caramanna, Martin Klein, Martin van den Bent, Ahmed Idbaih, Martin J B Taphoorn, Linda Dirven, Thierry Gorlia, Jaap C Reijneveld
{"title":"Neurocognitive impairment and patient-proxy agreement on health-related quality of life evaluations in recurrent high-grade glioma patients.","authors":"Ivan Caramanna, Martin Klein, Martin van den Bent, Ahmed Idbaih, Martin J B Taphoorn, Linda Dirven, Thierry Gorlia, Jaap C Reijneveld","doi":"10.1007/s11136-025-03984-1","DOIUrl":"https://doi.org/10.1007/s11136-025-03984-1","url":null,"abstract":"<p><strong>Purpose: </strong>The rate of missing data on patient-reported health-related quality of life (HRQOL) in brain tumor clinical trials is particularly high over time. One solution to this issue is the use of proxy (i.e. partner, relative, informal caregiver) ratings in lieu of patient-reported outcomes (PROs). In this study, we investigated patient-proxy agreement on HRQOL outcomes in high-grade glioma (HGG) patients.</p><p><strong>Methods: </strong>Generic and disease-specific HRQOL was assessed using the EORTC QLQ-C30 and QLQ-BN20 in a sample of 500 patient-proxy dyads participating in EORTC trials 26101 and 26091. Patients were classified as impaired or intact based on their neurocognitive performance. The level of patient-proxy agreement was measured using Lin's concordance correlation coefficient (CCC), and the Bland-Altman limit of agreement. The Wilcoxon signed-rank test was used to evaluate differences between patients' and proxies' HRQOL.</p><p><strong>Results: </strong>Patient-proxy agreement in all HGG patients (N = 500) ranged from 0.399 to 0.743. Only 18.8% of all patients were neurocognitively intact. Lin's CCC ranged from 0.231 to 0.811 in cognitively impaired patients and their proxies, and from 0.376 to 0.732 in cognitively intact patients and their proxies.</p><p><strong>Conclusions: </strong>The results of this study suggest that the moderate level of patient-proxy agreement observed in HGG patients would allow reliance on proxies' reports. However, the differences observed between neurocognitively impaired and intact patients stress the importance of taking into consideration patient's clinical and neurocognitive status as well as their mental capacity for adequate clinical decision making in general and for PRO-related issues.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-06-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144226482","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}