Quality of Life Research最新文献

{"title":"Developing and testing a patient-reported outcome measure for patients with sleep disturbances using EQ-5D and condition-specific bolt-ons: a mixed method study.","authors":"Ai-Ping Chua, Aureliano Paolo Finch, Shaffinaz Abd Rahman, Mary Anne Relimbo Dela Cruz, Emelita Naval Montaniel, Kaayathiri Ravichandran, Nan Luo","doi":"10.1007/s11136-025-03985-0","DOIUrl":"https://doi.org/10.1007/s11136-025-03985-0","url":null,"abstract":"<p><strong>Objectives: </strong>The EQ-5D-5L may not adequately capture the health-related quality of life in patients with sleep disturbances. We examined the psychometric properties of a hybrid PROM comprising a module of four sleep-related bolt-ons and EQ-5D-5L.</p><p><strong>Methods: </strong>We employed a sequential exploratory mixed method by first qualitatively testing the face validity of \"sleep\", \"cognition\", \"tiredness\" and \"relationship\" and refining these bolt-ons through in-depth interviews with 23 patients and clinicians. We then quantitatively assessed their performance by administering the four bolt-ons, appended to EQ-5D-5L, and three condition-specific patient-reported outcome measures (cPROMs) during two clinical visits of patients with respiratory-related sleep disorders. We compared ceiling effects and construct validity of EQ-5D-5L with and without the bolt-ons by testing a priori hypotheses about the cPROMs and polysomnographic characteristics via correlation and areas under the curves (AUC) analyses, respectively. We examined their responsiveness among \"treated/improved\" participants using standardized response means (SRM) and AUC analysis, and reliability among \"untreated/no change\" participants using intra-class correlation coefficient (ICC) or Cohen's Kappa (k).</p><p><strong>Results: </strong>110 participants (mean [SD] age: 47[13]) were recruited and 90 returned for their review assessments (mean [SD] interval: 2.2 [2.1] months). The bolt-ons led to a reduction of 42.7% in ceiling effects. The bolt-ons were better correlated with cPROMs and exhibited higher discriminatory power and responsiveness, with comparable reliability to EQ-5D-5L. A combined module of the four bolt-ons provided better results than individual bolt-ons.</p><p><strong>Conclusions: </strong>A \"hybrid\" PROM of sleep bolt-ons module added to EQ-5D-5L improved its psychometric properties among patients with sleep disturbances.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-05-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144120637","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":"How well do participants understand the questions asked in the Online Personal Utility Functions (OPUF) approach? A cognitive debrief of the EQ-HWB-S (EQ Health and Wellbeing Short version) valuation.","authors":"Tessa Peasgood, Nancy Devlin, Kristina Ludwig, Ole Marten, Emily McDool, Paul Schneider, Koonal Shah, Clara Mukuria","doi":"10.1007/s11136-025-03989-w","DOIUrl":"https://doi.org/10.1007/s11136-025-03989-w","url":null,"abstract":"<p><strong>Purpose: </strong>Online elicitation of Personal Utility Functions (OPUF) is an innovative approach to valuing health states. OPUF uses a combination of ranking, swing-weighting, levels-rating and anchoring dead tasks. Little is known about how participants interpret and engage with OPUF tasks. This study aimed to address this gap.</p><p><strong>Method: </strong>Cognitive debrief interviews, which included 'think-aloud' and probing questions, were undertaken in the UK to understand how members of the public engage with OPUF when used to value the EQ-HWB-S (EQ Health and Wellbeing Short version). Coding drew upon a Framework approach, with final codes including an assessment of how participants engaged with each of the five OPUF tasks based on whether (1) they completed as expected, (2) minor concerns were identified or (3) major concerns were identified. The presence of major concerns was judged to undermine the validity of responses.</p><p><strong>Results: </strong>All 27 interviews were identified to have at least minor concern and 18 (67%) were identified as having major concerns. Major concerns were identified in four of the tasks: ranking (in 19% of interviews), swing-weighting (30%), levels-rating (56%), anchoring dead task (48%). Older participants were more likely to have major errors.</p><p><strong>Conclusion: </strong>Think-aloud and probing interviews with 27 participants completing the OPUF identified multiple concerns, to the extent that their data is unlikely to be a valid reflection of their preferences. The extent of concerns identified here suggests the need for interviewer led data collection within OPUF to ensure data quality.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-05-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144086561","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":"Anchor questions to improve patient-reported outcome measure interpretability in patients undergoing knee or hip arthroplasty - a mixed-methods content validity, construct validity, and reliability study.","authors":"Lasse K Harris, Trine S Larsen, Berend Terluin, Henrik H Lauridsen, Anders Troelsen, Lina H Ingelsrud","doi":"10.1007/s11136-025-03987-y","DOIUrl":"https://doi.org/10.1007/s11136-025-03987-y","url":null,"abstract":"<p><strong>Purpose: </strong>To explore content validity, construct validity, and reliability of anchor questions used to determine minimal important change (MIC), patient acceptable symptom state (PASS) and treatment failure (TF) in patients undergoing knee or hip arthroplasty.</p><p><strong>Methods: </strong>A mixed-methods study from one public hospital. Evaluation of content validity involved applying thematic analysis to data from think-aloud interviews. To ascertain construct validity and reliability, we focused on patients who underwent surgery between 2016 and 2022 and had responded to preoperative and either 3-, 12- or 24-month postoperative questionnaires. Confirmatory factor analysis (CFA) was employed to assess present state bias (PSB), model fit, and reliability of the anchor questions.</p><p><strong>Results: </strong>We conducted 18 interviews with patients aged 52 to 84 (10 female). Based on seven emerging themes from the content validity analysis, MIC and PASS anchor questions were considered relevant and comprehensible, while the TF anchor question had several problems. Data from 1197 to 2207 patients, with 3-, 12-, or 24-month postoperative responses, were used to evaluate construct validity. The median age was 69-70 years (56-59% female). PSB for MIC was between 54 and 73%, and reliability for the anchor questions was between 0.52 and 0.80 for all time points. The CFA models varied between good and poor fit.</p><p><strong>Conclusion: </strong>The MIC and PASS anchor questions demonstrated a high degree of content validity, while it was questionable for TF. Construct validity was considered good to poor for PASS, but patients may consider their present state more than their preoperative state when responding to the MIC. Reliability was considered acceptable in both MIC and PASS.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-05-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144079788","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":"Development and initial validation of the health-related quality of life pictorial inventory for children (HEALTH-PIC).","authors":"Tracy C W Tang, Mun Wong, Jian-Bin Li, Derwin K C Chan","doi":"10.1007/s11136-025-03988-x","DOIUrl":"https://doi.org/10.1007/s11136-025-03988-x","url":null,"abstract":"<p><strong>Purpose: </strong>This 3-study paper aimed to develop and validate a self-reported Health-Related Quality of Life Pictorial Inventory for Early Childhood Children (HEALTH-PIC). The scale was designed to overcome existing barriers of parent-proxy response styles such as observation bias and offer an alternative to age-suited literary questionnaires to assess self-reported health-related quality of life, including physical health, emotional health, social health and school health in early childhood.</p><p><strong>Methods: </strong>Each study targeted a specific aspect of scale development, employing distinct samples to refine and validate the inventory. Study 1 involved item development/revision, which utilized a panel of 10 experts (Mean_age = 34.8, SD = 4.9) and 25 parents (Mean_age = 38.9; SD = 4.1) via the Delphi method to revise the scale and establish agreement. Study 2 is a cross-sectional study that invited a sample of 22 primary school students (Mean_age = 6.18, SD = 0.39) and 20 kindergarten students (Mean_age = 4.55, SD = 0.50) to establish face validity amongst primary respondents. Finally, Study 3 is a cross-sectional study that invited 342 parent and child (Mean_age = 6.30, SD = 1.31) dyads to complete the HEALTH-PIC and reference health-related quality of life (HRQoL) questionnaires to establish the questionnaire's factorial, concurrent, discriminant and criterion validity in addition to internal consistency.</p><p><strong>Results: </strong>Scale items in Study 1 were developed alongside experts and parents with a strong theoretical and statistical support calculated using Aiken's agreement (Aiken's V p < 0.05), ensuring that the items were clear, accurate and applicable for children. In Study 2, we ensured that primary respondents of different ages were able to accurately identify the pictorial images (Aiken's V p < 0.05) and complete the questionnaire when the scripted instructions were read aloud. In Study 3, structural equation modelling of the HEALTH-PIC demonstrated a robust factor structure (CFI and TLI > 0.99; RMSEA and SRMR ≤ 0.08), concurrent validity, discriminant validity, criterion validity and an acceptable level of internal consistency (i.e., Cronbach's α = 0.60-0.66).</p><p><strong>Conclusion: </strong>The findings of the three studies provide preliminary evidence to support the content validity and construct validity of the HEALTH-PIC. This novel pictorial scale not only provides a reliable and valid assessment of the multidimensional aspects of health-related quality of life among children but can also overcome existing barriers of parent-proxy or age-suited questionnaires.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-05-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144079795","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Use of a generic Paediatric Patient Reported Outcome Measure (P-PROM) in Routine hospital Outpatient Care for Kids (ROCK): A qualitative exploration of adolescent, caregiver and service provider perspectives (P-PROM ROCK Phase 1).","authors":"Renee Jones, Kim Dalziel, Harriet Hiscock, Alexander van Heudsen, Nancy Devlin","doi":"10.1007/s11136-025-03990-3","DOIUrl":"https://doi.org/10.1007/s11136-025-03990-3","url":null,"abstract":"<p><strong>Purpose: </strong>To explore patient, caregiver, and service provider perspectives on the implementation of a generic Paediatric Patient Reported Outcome Measure (P-PROM), their perspectives on the EQ-5D-Y-5L, and to consider how these insights can be used to co-design routine use of EQ-5D-Y-5L in paediatric outpatient care.</p><p><strong>Methods: </strong>Individual semi-structured interviews were conducted with adolescent patients, caregivers, and providers (allied health, nurses, doctors) who had provided or received outpatient care at The Royal Children's Hospital, Australia. Interview transcripts were analysed using framework analysis and subsequent themes were mapped to an acceptability framework.</p><p><strong>Results: </strong>Interviews were conducted in June and July 2023 with six service providers, five caregivers and three adolescent patients. Despite service provider concerns that generic P-PROMs may be too broad; all were open to their use. Participants did not see value in patients simply completing a generic P-PROM; it was emphasised that such information needed to be used and responded to. Participants were largely supportive of using the EQ-5D-Y-5L in clinical care, although some were concerned about the short recall period and negative framing. Displaying EQ-5D-Y-5L responses by item was preferred by participants. These different perspectives were summarised into enablers and barriers of acceptability.</p><p><strong>Conclusions: </strong>Perspectives gathered from this study highlight that generic P-PROMs, such as EQ-5D-Y-5L, may have potential for use in paediatric outpatient care. However, to have a meaningful impact, careful consideration is needed regarding implementation. Results have informed co-design of the P-PROM ROCK Program.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-05-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144064549","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Multi-dimensional frailty and Oral Health-Related Quality-of-Life in older adults: a cross-sectional study.","authors":"Ana Cristina Mafla, Mauricio Herrera-López, Bruno Gutiérrez-Quiceno, Nico De Witte, Falk Schwendicke","doi":"10.1007/s11136-025-03969-0","DOIUrl":"https://doi.org/10.1007/s11136-025-03969-0","url":null,"abstract":"<p><strong>Background: </strong>Frailty is an age-associated decline of physiological functions, with psychological, social and environmental dimensions. Frailty is associated with oral health and well-being. We aimed to determine the association between Oral Health-Related Quality-of-Life (OHRQoL) and multi-dimensional frailty in older Colombians.</p><p><strong>Methods: </strong>An observational study was conducted and included 1,079 older adults aged 60 to 105 years from Pasto, Colombia, recruited from different government programs targeting older adults. Socio-demographic characteristics were registered; OHRQoL was determined using the self-administered Colombian Geriatric Oral Health Assessment Index (GOHAI) version, and frailty using the Comprehensive Frailty Assessment Instrument (CFAI) and covariates identified with directed acyclic graph (DAG) analysis. A descriptive analysis and a generalized linear model (GLM) were performed.</p><p><strong>Results: </strong>The sample was comprised of 386 males (35.8%) and 693 (64.2%) females. The mean age was 71.85 years (standard deviation, SD=8.55). The mean GOHAI was 49.60 (SD=8.91). GLM found that overall frailty dimensions of the CFAI negatively impacted OHRQoL with psychological dimension having the largest impact (β= -0.44, 95% CI:-0.54- -0.34, P<0.001).</p><p><strong>Conclusion: </strong>Comprehensive frailty assessment allows us to map various dimensions of frailty and the impact they have on OHRQoL.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-05-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144021347","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":"Health-related quality of life among patients with rheumatoid arthritis in Zanzibar: a prospective cohort study.","authors":"Sanaa S Said, Kjell Arne Johansson, Tone Wikene Nystad, Johnson Jeremia Mshiu, Bjorg-Tilde Svanes Fevang","doi":"10.1007/s11136-025-03974-3","DOIUrl":"https://doi.org/10.1007/s11136-025-03974-3","url":null,"abstract":"<p><strong>Purpose: </strong>Rheumatoid arthritis (RA) is a chronic inflammatory illness that mainly affects the joints. Untreated, it causes deformity, poor health-related quality of life (HRQoL) and increased morbidity and mortality. There have been tremendous strides in RA therapies globally but with sparse availability in resource-limited settings. We aimed to evaluate HRQoL among patients with RA and its related factors.</p><p><strong>Methods: </strong>132 patients with RA were enrolled and followed up for one year. The same number of healthy controls were recruited. HRQoL was assessed using the EuroQoL five-dimension five-level tool (EQ-5D). From the responses, utility and visual analog scale (VAS) scores were obtained. Analysis of variance and independent t tests were used to compare the utility and VAS scores for patient subgroups. Factors influencing HRQoL were investigated through multiple linear regression analysis. A p value of < 0.05 was considered significant.</p><p><strong>Results: </strong>At baseline, mean patient utility score was 0.50 ± 0.06 and increased to 0.66 ± 0.10 at one year (p < 0.05). Compared to controls, whose mean utility score was 0.93 ± 0.02, patients with RA at one year had lower HRQoL (p < 0.001). Time to diagnosis of ≥ 1 year and higher disease activity were associated with poorer HRQoL. Patient VAS scores also improved from baseline to one year but were significantly lower than controls.</p><p><strong>Conclusion: </strong>HRQoL of patients with RA was lower than in controls but improved at one year indicating the impact of treatment. Reducing delays in diagnosis and initiating early and aggressive treatment may help to improve the HRQoL.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-05-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144043988","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":"EuroQol data for assessment of population health needs and instrument evaluation (EQ-DAPHNIE): a study for enhancing population health assessment.","authors":"Jeffrey A Johnson, Mathieu F Janssen, Fatima Al Sayah, Henry Bailey, Mihir Gandhi, Dominik Golicki, Nils Gutacker, Erica Lubetkin, Brendan Mulhern, Fredrick Dermawan Purba, Juan M Ramos-Goñi, Desiree Scott, Hilary Short, Trudy Sullivan, Rosalie Viney, Zhihao Yang, Victor Zárate","doi":"10.1007/s11136-025-03983-2","DOIUrl":"https://doi.org/10.1007/s11136-025-03983-2","url":null,"abstract":"<p><strong>Background: </strong>Methods for collecting self-reported health status measures in population health surveys vary significantly across countries, presenting challenges to comparability. The EuroQol Data for Assessment of Population Health Needs and Instrument Evaluation (EQ-DAPHNIE) project aims to address this issue by developing infrastructure to generate representative datasets across multiple countries. This initiative aims to standardize data collection methodologies and to evaluate the performance of various health status measures, providing a foundation for reliable population health assessments. This paper describes the rationale, design and data collection methods for the EQ-DAPHNIE project.</p><p><strong>Methods/design: </strong>EQ-DAPHNIE employs a cross-sectional online survey design targeting the general adult population across various countries. Participants were recruited through an online panel provider. Each country had a target sample of 4500 responses, with quota sampling to ensure representativeness based on age, sex, income, region, and language. The survey collected comprehensive data on social determinants of health at both individual and neighbourhood levels. Participation was voluntary, and measures were taken to maintain data anonymity and ensure data quality through pre-testing and various quality assurance approaches.</p><p><strong>Discussion: </strong>The EQ-DAPHNIE project represents a significant advancement in generating large, representative, and comparable population health datasets across multiple countries. By employing precise sampling strategies, robust recruitment and data collection methods, and rigorous quality control measures, the project aims to provide a valuable resource for assessing and understanding population health and evaluating various health-related quality of life (HRQoL) and wellbeing instruments.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-05-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144050580","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The role of different health information sources in moderating the impact of health literacy on health-related quality of life: evidence from a population-based study in Korea.","authors":"Hye Jin Nam, Ju Young Yoon","doi":"10.1007/s11136-025-03904-3","DOIUrl":"10.1007/s11136-025-03904-3","url":null,"abstract":"<p><strong>Purpose: </strong>Health literacy is a key aspect of healthy living and is widely recognized as a crucial determinant of health outcomes and disparities. Health literacy enables individuals to make informed decisions by accessing, understanding, and utilizing health-related information effectively. Access to and use of health information are essential for optimal health outcomes. This study explores whether different health information sources, such as active, interpersonal, and passive sources, moderate the relationship between health literacy and health-related quality of life (HRQoL).</p><p><strong>Methods: </strong>This study analyzed data from the 2021 Korea Health Panel (Version 2.1) including 4164 eligible samples. Health literacy was assessed using the Korean version of the European Health Literacy Survey Questionnaire. Complex sample analysis was used to compute descriptive statistics of the study variables. To determine the moderating effects of health information sources, this study used Hayes's PROCESS macro (Model 1).</p><p><strong>Results: </strong>Among the weighted sample of 16,351,227 participants, 76.1% used active sources to obtain health information, whereas 13.5% and 10.5%, respectively, used interpersonal and passive sources. Regression analysis showed that the moderating effects of health information sources were positively significant. The associations between health literacy and HRQoL were stronger in the interpersonal source group compared to the active or passive source groups.</p><p><strong>Conclusion: </strong>This study highlights the moderating role of interpersonal health information sources in enhancing the relationship between health literacy and health-related quality of life. Interventions targeting interpersonal communication channels may be effective in improving health outcomes, particularly among populations with limited health literacy.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"1333-1344"},"PeriodicalIF":3.3,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143053461","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Long-term health-related quality of life among adolescent and young adult breast cancer survivors.","authors":"Noelle J M C Vrancken Peeters, Roos Kerklaan, Carla Vlooswijk, Rhodé M Bijlsma, Suzanne E J Kaal, Jacqueline M Tromp, Monique E M M Bos, Tom van der Hulle, Maaike de Boer, Janine Nuver, Mathilde C M Kouwenhoven, Winette T A van der Graaf, Olga Husson","doi":"10.1007/s11136-025-03914-1","DOIUrl":"10.1007/s11136-025-03914-1","url":null,"abstract":"<p><strong>Purpose: </strong>As the prognosis for adolescents and young adults (AYAs) with breast cancer has improved, long-term health-related quality of life (HRQoL) has become increasingly important. This study aimed to analyze the long-term HRQoL of AYA breast cancer survivors compared to an age-matched normative population and to identify factors associated with HRQoL.</p><p><strong>Methods: </strong>Secondary analyses were conducted using data from the SURVAYA study. The European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core-30 (EORTC QLQ-C30) was used to assess HRQoL. The Mann-Whitney U test was used to compare HRQoL scores of AYA breast cancer survivors with those of the normative population (n = 409). Linear regression models were constructed to identify patient and treatment characteristics associated with HRQoL.</p><p><strong>Results: </strong>A total of 944 female AYA breast cancer survivors were included, with a median age of 36.0 years and a median follow-up of 12.2 years. AYA breast cancer survivors scored significantly lower on five functional scales: physical, role, emotional, cognitive, and social, and higher on five symptom scales: fatigue, pain, dyspnea, insomnia, and financial impact compared to the normative population. Being in a relationship, having a positive body image, and adaptive coping were positively associated with HRQoL, while older age, chemotherapy, unemployment, and maladaptive coping were negatively associated.</p><p><strong>Conclusion: </strong>AYA breast cancer survivors experience significantly compromised long-term HRQoL compared to an age-matched normative population. These results highlight the need for tailored follow-up care and long-term support, as well as the importance of shared decision-making about the benefits and risks of treatments before initiation.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"1483-1500"},"PeriodicalIF":3.3,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12064603/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143468887","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}