Quality of Life Research最新文献

{"title":"Beyond interference: occupational participation considerations in the assessment of post-stroke fatigue.","authors":"M R Maimoona","doi":"10.1007/s11136-026-04345-2","DOIUrl":"10.1007/s11136-026-04345-2","url":null,"abstract":"","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":"35 9","pages":""},"PeriodicalIF":3.4,"publicationDate":"2026-07-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148579995","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":"Quality of life with anophthalmia: a systematic review.","authors":"Abdelrahman Abu Osba, Aaryamaan Verma, Asim Ibrahim, Abd El Aziz Hendy, Mostafa Bondok, Alexander Deans, Edsel Ing, Ahsen Hussain","doi":"10.1007/s11136-026-04343-4","DOIUrl":"10.1007/s11136-026-04343-4","url":null,"abstract":"<p><strong>Purpose: </strong>Anophthalmia due to enucleation, evisceration, or exenteration, results in permanent vision loss that may have profound functional, psychological, and social consequences. The purpose of this study is to evaluate health-related quality of life, vision-related quality of life, and psychosocial outcomes among adults with anophthalmia.</p><p><strong>Methods: </strong>This systematic review was conducted in accordance with PRISMA 2020 guidelines and prospectively registered on PROSPERO (ID: CRD420251274476). MEDLINE, Embase, and CENTRAL were searched from inception to September 9, 2025. Eligible studies included participants with congenital or acquired anophthalmia and reported outcomes related to quality of life or psychosocial health. Risk of bias was assessed using the Cochrane RoB-2 tool for randomized trials and Joanna Briggs Institute critical appraisal tools for observational studies and results were synthesized narratively.</p><p><strong>Results: </strong>Forty-two studies (1999-2025) including 4544 patients (56.0% male; mean age 49.9 years) were included. Enucleation was the most common procedure (55.1%), and most cases were unilateral (59.6%). Health-related quality of life was commonly assessed using the SF-36 and vision-related quality of life using the NEI VFQ-25. Early postoperative reductions in health-related quality of life were frequently observed, with partial recovery over time. Vision-related quality of life remained persistently impaired, particularly for depth perception, peripheral vision, and driving. While mean anxiety and depression scores were often within normal ranges, a substantial subset of patients experienced ongoing psychological distress and appearance-related concerns.</p><p><strong>Conclusions: </strong>Acquired anophthalmia is associated with enduring vision-specific and psychosocial challenges, supporting the need for anticipatory counseling and integrated multidisciplinary rehabilitation in clinical practice.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":"35 9","pages":""},"PeriodicalIF":3.4,"publicationDate":"2026-07-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148580120","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":"Thyroid-specific symptom burden rather than psychological distress following thermal ablation versus open surgery for low-risk thyroid cancer: a 24-month propensity score-matched patient-reported outcome study.","authors":"Zhiwei Xing, Hanqi Wang, Gongshuai Tao, Xiaopeng Ma, Fanfan Li","doi":"10.1007/s11136-026-04346-1","DOIUrl":"10.1007/s11136-026-04346-1","url":null,"abstract":"<p><strong>Purpose: </strong>To compare longitudinal psychological outcomes and health-related quality of life after thermal ablation versus open surgery in carefully selected patients with low-risk thyroid cancer and to identify the domains most associated with differences in patient-reported outcomes.</p><p><strong>Methods: </strong>This single-center retrospective longitudinal cohort included consecutive patients treated between March and August 2023. After exclusions, 230 patients comprised the pre-matching cohort; 176 (44 thermal ablation, 132 open surgery) formed the primary analytic cohort after 1:3 propensity score matching on age, sex, maximum tumor diameter, and tumor location. HADS, FoP-Q-SF, EORTC QLQ-C30, and EORTC QLQ-THY34 were assessed at 6, 12, and 24 months. Generalized estimating equations were used, with Benjamini-Hochberg correction; IPTW-weighted, nearest-observation imputation, multiple-imputation, whole-table false-discovery-rate, and E-value analyses served as sensitivity analyses. Because pretreatment scores were unavailable and multiple outcomes were examined, analyses were regarded as exploratory.</p><p><strong>Results: </strong>After matching, baseline covariates and follow-up completion were comparable between groups. Thermal ablation was associated with higher global health/QoL, physical, role, and social functioning and lower pain at 6 months. More consistently, it was associated with lower head and neck discomfort, voice problems, swallowing problems, and body-image concerns at 6, 12, and 24 months, and with lower shoulder function limitation at 24 months. Anxiety, depression, HADS total score, and fear of progression did not differ significantly. Principal sensitivity analyses were directionally concordant.</p><p><strong>Conclusion: </strong>In selected patients with low-risk thyroid cancer, thermal ablation was associated with better early functional recovery and lower sustained thyroid-specific symptom burden, but not with measurable differences in psychological distress. Because the design was observational and lacked baseline scores, these associations are exploratory and should be confirmed prospectively before any causal interpretation. They nonetheless support incorporating longitudinal patient-reported outcomes into shared decision-making.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":"35 9","pages":""},"PeriodicalIF":3.4,"publicationDate":"2026-07-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148579764","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":"Mapping the EORTC item library to the World Health Organization international classification of functioning, disability and health: a content analysis.","authors":"Hayat Hamzeh, Shaista Meer, Maria Rothmund-Grenier, Nathalie Egeter, Emma Lidington, Dagmara Kuliś, Mogens Groenvold, Johannes M Giesinger, Alexandra Gilbert, Claire Piccinin","doi":"10.1007/s11136-026-04335-4","DOIUrl":"10.1007/s11136-026-04335-4","url":null,"abstract":"<p><strong>Purpose: </strong>The European Organisation for Research and Treatment of Cancer (EORTC) questionnaires are some of the most widely used patient-reported outcome measures (PROMs) for health-related quality of life assessment in oncology. The EORTC Item Library is an online platform comprising all EORTC PROMs that enables the creation of customised questionnaires (item lists). To characterise and better understand the breadth of functioning, disability and health coverage within the EORTC Item Library, this study aimed to link and analyse its content using the International Classification of Functioning, Disability and Health (ICF).</p><p><strong>Methods: </strong>A team of reviewers applied the most recent ICF linking rules to map the items currently included in the EORTC Item Library. Descriptive analysis was used to summarise the content covered in ICF categories and concepts coded as not covered or not definable.</p><p><strong>Results: </strong>The 1076 EORTC items covered 1860 concepts overall, with most (n = 1641, 88.2%) linked to the ICF. Concepts were linked to the majority of ICF chapters (n = 28/30, 93.3%), covering 60.9% (168/276) of all second-level ICF categories. The components of 'b-Body functions' and 'd-Activities and participation' had the highest coverage, with concepts linked to 80.0% (64/80) and 68.5% (63/92) of all second-level categories respectively.</p><p><strong>Conclusions: </strong>The EORTC Item Library provides broad coverage of functioning, disability and health within the ICF. Using the ICF to describe its content can inform the selection of EORTC items and PROMs and facilitate standardised comparison across measures and contexts, supporting the use and interpretation of EORTC measures in research and clinical practice.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":"35 9","pages":""},"PeriodicalIF":3.4,"publicationDate":"2026-07-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13395993/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148580029","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}

{"title":"Item comprehension and content coverage of patient-reported outcome measures for long COVID: a qualitative study.","authors":"Christina K Zigler, Charis Yousefian, Rikki Mangrum, Maliyah Faulstich, Sean M O'Brien, Christine Maughan, Marta Cerda, Lucinda Bateman, Cyndya A Shibao, Barry Make, Leonard A Jason, Kevin P Weinfurt, Kanecia O Zimmerman","doi":"10.1007/s11136-026-04340-7","DOIUrl":"10.1007/s11136-026-04340-7","url":null,"abstract":"<p><strong>Purpose: </strong>Fit-for-purpose clinical outcome assessments are essential to inform medical product development, but outcome measures for Long COVID, a new and devastating phenomenon, have not yet been established. The objective of this study was to evaluate item comprehension and content coverage of four selected patient-reported outcome measures (PROMs) for use in a Long COVID clinical trial platform.</p><p><strong>Methods: </strong>A noninterventional, cross-sectional qualitative cognitive debriefing study of English-speaking adults with Long COVID was conducted, with interviews taking place virtually between August and November 2024. Recruitment was managed by a research firm. The main outcomes of the study were participant comprehension and relevance of the selected PROMs, including symptoms and functioning as measured by modified versions of the DePaul Symptom Questionnaire-Post-Exertional Malaise, Everyday Cognition Scale 2 questionnaire, Composite Autonomic Symptom Score-31, and Orthostatic Hypotension Questionnaire.</p><p><strong>Results: </strong>Participants were able to comprehend most items and indicated they were relevant to their experiences with Long COVID. Participants identified potential enhancements to the measures such as simplifying instructions, modifying item wording, and reducing PROM length. Interviewers observed cognitive burden during some of the interviews.</p><p><strong>Conclusions: </strong>Based on the overall support for comprehension and relevance of items within each measure, use of these measures within the Long COVID clinical trial platform was generally supported. Future work, including qualitative and quantitative studies, could improve the experience of PROM data collection in this context. Clinical trial protocols for Long COVID should carefully consider burden on participants when collecting PROMs.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":"35 9","pages":""},"PeriodicalIF":3.4,"publicationDate":"2026-07-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13396033/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148580020","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}

{"title":"Diet-related quality of life is associated with health-related quality of life: a nationwide online cohort study.","authors":"Yoshinari Matsumoto, Ataru Igarashi, Yasutake Tomata, Takahiro Tabuchi","doi":"10.1007/s11136-026-04356-z","DOIUrl":"10.1007/s11136-026-04356-z","url":null,"abstract":"<p><strong>Purpose: </strong>This study focused on diet-related quality of life (DRQoL), a concept encompassing the enjoyment of meals, dietary satisfaction, environment, and variety, and examined its association with health-related quality of life (HRQoL) in Japan.</p><p><strong>Methods: </strong>This study analyzed the data from the nationwide 2021 and 2022 JACSIS study in Japan using cross-sectional and longitudinal data. DRQoL was assessed using a short version of the DRQoL Scale, and DRQoL scores were categorized into sex-specific quartiles. HRQoL was assessed using the EuroQol 5 dimensions 5-level. In the cross-sectional analysis, the association between DRQoL and the full HRQoL score was analyzed using multivariable logistic regression analysis. Longitudinal HRQoL changes were evaluated using the Paretian Classification of Health Change. Multinomial logistic regression analysis was performed with \"the same,\" \"worse,\" \"better,\" and \"mixed\" as outcomes. Stabilized calibration weights were applied to ensure representativeness.</p><p><strong>Results: </strong>The analysis included 19,482 participants. In the cross-sectional analysis, DRQoL Q2 [stabilized calibration weight-adjusted odds ratio (swOR): 1.21, 95% confidence interval (CI): 1.05, 1.41], Q3 (swOR: 1.43, 95% CI 1.23, 1.66), and Q4 (swOR: 2.04, 95% CI 1.77, 2.37) were significantly associated with a full HRQoL score. In the longitudinal analysis, Q4 status in DRQoL was significantly associated with lower odds of worse (swOR: 0.70, 95% CI 0.58, 0.83) and mixed HRQoL outcomes (swOR: 0.72, 95% CI 0.48, 0.99).</p><p><strong>Conclusion: </strong>Higher DRQoL was associated with higher HRQoL in both cross-sectional and longitudinal analyses, suggesting an association between DRQoL and HRQoL in the general Japanese population.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":"35 9","pages":""},"PeriodicalIF":3.4,"publicationDate":"2026-07-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148579974","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":"Comment on \"Association between child ADHD and caregivers' mental health and health-related quality of life: results from a population-based study\".","authors":"Anri Inumaru, Yurika Saito, Yohei Kishi","doi":"10.1007/s11136-026-04332-7","DOIUrl":"10.1007/s11136-026-04332-7","url":null,"abstract":"","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":"35 9","pages":""},"PeriodicalIF":3.4,"publicationDate":"2026-07-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148579961","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":"Eliciting health state utilities for open wounds in dystrophic epidermolysis bullosa.","authors":"Damian Lewis, Adam B Smith, Marjolijn van Keep, Anna E Martinez, Gabriela Petrof, Sagair Hussain, Sophie Jones, Sharmila Nikapota, Andria Joseph","doi":"10.1007/s11136-026-04322-9","DOIUrl":"10.1007/s11136-026-04322-9","url":null,"abstract":"<p><strong>Purpose: </strong>Qualitative accounts and studies employing disease-specific outcome measures have demonstrated that people with dystrophic epidermolysis bullosa (DEB) display impaired health-related quality of life (HRQoL) due to wound-related challenges. There is a paucity of utility data necessary to inform the health economic evaluation of emerging treatments for cutaneous open wounds.</p><p><strong>Methods: </strong>The objective was to implement a vignette study with a representative sample of the United Kingdom (UK) general population (N = 1139) and people with DEB (N = 44) to estimate utility values. Vignettes were defined by various attributes, including the number and area of wounds, pain, itch and hours spent managing wounds. Participants valued the vignettes from the perspective of a patient or a caregiver proxy using the EQ-5D-3L or EQ-5D-Y-3L, respectively.</p><p><strong>Results: </strong>The mean utilities elicited from the patient perspective ranged from 0.491 to - 0.448 and 0.457 to - 0.462 for the general population (N = 627) and DEB (N = 31) sample, respectively. The utilities elicited from the proxy perspective ranged from 0.443 to - 0.543 and 0.079 to - 0.550 in the general population (N = 512) and DEB (N = 13) sample, respectively.</p><p><strong>Conclusion: </strong>The findings join a limited evidence base indicating that the symptoms associated with the wounds experienced by people with DEB have a considerable detrimental effect on their HRQoL.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":"35 9","pages":""},"PeriodicalIF":3.4,"publicationDate":"2026-07-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13395976/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148579950","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}

{"title":"The association of social isolation and family structure on stroke-specific quality of life in a community-based study.","authors":"Josh Martins-Caulfield, Chen Chen, Lynda D Lisabeth, Guanghao Zhang, Madeline Kwicklis, Leanna M Delhey, Lewis B Morgenstern","doi":"10.1007/s11136-026-04337-2","DOIUrl":"10.1007/s11136-026-04337-2","url":null,"abstract":"<p><strong>Purpose: </strong>Quality of Life (QOL) is a critical patient-centered outcome for individuals who have experienced stroke. This study examined the association of social isolation and family structure with Stroke-Specific QOL (SSQOL).</p><p><strong>Methods: </strong>Participants were stroke survivors enrolled in the Brain Attack Surveillance in Corpus Christi (BASIC) study in Nueces County, Texas who completed 90-day post-stroke follow-up interviews between October 2019 and June 2023. Interviewers assessed QOL using the SSQOL scale, social isolation using the Patient-Reported Outcomes Measurement Information System (PROMIS) scale. Family structure was assessed based on marital status, family size, and whether adult children were living within 10 miles of the patient. Linear models were developed to analyze the relationship between social isolation and SSQOL with successive adjustment for demographic, clinical, socioeconomic, and familial variables from interviews and medical records.</p><p><strong>Results: </strong>Among 706 stroke survivors (median age = 64, 36% Non-Hispanic White and 64% Mexican American), median PROMIS social isolation score was 44 (IQR: 34.8-51.6) and median SSQOL was 3.67 (IQR: 2.75-4.50). The average family size was 2.18 people and 50% of participants were married while 60% had a child living within 10 miles of them. A consistent negative association between social isolation and SSQOL scores was observed across all adjusted models (fully adjusted [Formula: see text]0.77, 95% CI = (- 0.88, - 0.65), p < 0.01), while family structure was not associated with SSQOL.</p><p><strong>Conclusions: </strong>Social isolation was negatively associated with SSQOL. There was no association between family structure and SSQOL. This study highlights the significance of modifiable psychosocial factors, such as social isolation, as potential key elements in stroke recovery.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":"35 9","pages":""},"PeriodicalIF":3.4,"publicationDate":"2026-07-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13395817/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148580129","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}

{"title":"Comments raised by 'Do non-responders to a geriatric screening questionnaire face lower 1-year survival compared to responders? A retrospective cohort study'.","authors":"Yohei Kishi, Yurika Saito, Anri Inumaru","doi":"10.1007/s11136-026-04349-y","DOIUrl":"10.1007/s11136-026-04349-y","url":null,"abstract":"","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":"35 9","pages":""},"PeriodicalIF":3.4,"publicationDate":"2026-07-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148579984","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}