Quality of Life Research最新文献

{"title":"The caregiver burden of idiopathic inflammatory myopathies.","authors":"Parker Brady, Roberto Sergio Hernandez, Amber Salter, Catherine Hua, Lynn Wilson, Manuel Lubinus, Yuan-Pai Hu, Dhruv Nandakumar, Abhiram R Bhashyam, Salman Bhai","doi":"10.1007/s11136-025-03953-8","DOIUrl":"https://doi.org/10.1007/s11136-025-03953-8","url":null,"abstract":"<p><strong>Purpose: </strong>The purpose of this cross-sectional study was to determine the prevalence of caregiver burden (CB) in caregivers of patients with idiopathic inflammatory myopathies (IIM).</p><p><strong>Methods: </strong>An anonymous survey was distributed worldwide to caregivers of myositis patients through Myositis Support and Understanding in May 2022. CB was measured using the Zarit Burden Interview. The survey also gathered caregiver demographic, financial, and insurance information as well as patient demographic and disease information.</p><p><strong>Results: </strong>Overall, 75.8% of caregivers had at least mild to moderate CB. 39.2% reported not being affected financially by their caregiving responsibilities. A positive effect was found between CB and time since diagnosis, disability level, and financial hardship. A negative effect was found with CB and caregiver age. No association was found between IIM type and CB.</p><p><strong>Conclusion: </strong>CB is a common experience among caregivers of all types of IIM patients. Future research can use our results to generate viable hypothesis about CB in myositis. They should also seek to further understand what contributed to CB in this population. Clinicians should also be attuned to the needs of caregivers tending to long-term myositis patients, especially caregivers of more disabled patients, older caregivers, and individuals financially challenged by caregiving.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-03-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143731326","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":"Reporting heterogeneity and health measurement bias in older adults: nationwide cross-sectional study.","authors":"Qingwen Deng, Yu Xia, Yi Yang, Shimeng Liu, Yingyao Chen","doi":"10.1007/s11136-025-03954-7","DOIUrl":"https://doi.org/10.1007/s11136-025-03954-7","url":null,"abstract":"<p><strong>Purpose: </strong>To examine reporting heterogeneity in self-rated health (SRH) among middle-aged and older adults using anchoring vignettes, and evaluate the impact of reporting heterogeneity on further measures of health inequalities.</p><p><strong>Methods: </strong>Data on a sample of 13,323 respondents aged 45 years and over from the China Family Panel Studies (CFPS) were used. An ordered probit model and the hierarchical ordered probit (HOPIT) model were used to compare the estimated differences in pre- and post-adjusted SRH, and the concentration index was applied to measure health inequalities.</p><p><strong>Results: </strong>After correcting for reporting heterogeneity, the health advantage of these middle-aged and older adults was further expanded to varying degrees, and those living in urban areas had better health compared to those living in rural areas (β = 0.057, P = 0.046). In addition, respondents with a high school education or higher and in urban areas use a lower cut-off point when rating a given health condition as poor and a higher cut-off point when rating a given health condition as good. Significant increases in the inequalities in SRH between urban and rural areas and across regions after adjustment for reporting heterogeneity. In comparison to urban areas, the trend that higher SRH was more concentrated among the better educated is more pronounced in rural areas.</p><p><strong>Conclusion: </strong>These findings highlight the importance of addressing reporting heterogeneity in SRH to ensure equitable healthcare interventions and resource allocation, particularly to underserved regions and populations.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-03-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143710719","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":"Disutilities of treatment-related attributes for type 2 diabetes mellitus: a systematic review.","authors":"Shitong Xie, Xinran Liu, Meixuan Li, Jing Wu","doi":"10.1007/s11136-025-03945-8","DOIUrl":"https://doi.org/10.1007/s11136-025-03945-8","url":null,"abstract":"<p><strong>Objectives: </strong>To synthesize the literature on eliciting disutilities associated with treatment-related attributes in type 2 diabetes (T2DM).</p><p><strong>Methods: </strong>We searched Medline, Embase, Cochrane Library, PsycINFO, EconLit and CINAHL databases from inception to December, 2024. This systematic review followed PRISMA guidelines, quality and risk of bias of the included studies were assessed using the NICE and ROBINS-I checklist.</p><p><strong>Results: </strong>Nine studies involving 59 to 4060 participants were included and most studies (n=6) were conducted in the UK. The perspective of preference included T2DM patients (n=7) and the general public (n=3), with one study included both. Elicitation approaches used were time trade-off (n=5) and standard gamble (n=4). Eight treatment-related attributes were identified, including weight change (n=5), dosing frequency (n=4), gastrointestinal side effects (n=2), flexible dosing (n=2), administration requirement (i.e., reconstitution, waiting, and needle handling) (n=2), injection site reaction (n=1), fear of hypoglycemia (n=1), and HbA1c levels (n=1). For the attribute of weight change, the (dis)utility value ranged from -0.106 to 0.047. Respondents showed a preference for weekly over daily administration (range: 0.023 to 0.095), once-daily over multiple-daily (range: 0.015 to 0.123). The (dis)utility values for the rest of six attributes ranged from -0.04 to 0.034.</p><p><strong>Conclusions: </strong>This review provides evidence synthesize of published disutilities related to T2DM treatment-related attributes which have a nonnegligible effect. Weight change and dosing frequency were the most reported with the largest impact. Given the considerable heterogeneity in current studies, care should be taken in selecting appropriate estimates between different elicitation methods, populations and countries.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-03-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143710480","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":"Determining minimal clinically important differences in ecological momentary assessment measures of fatigue in people with multiple sclerosis.","authors":"Sonia Sharma, Tiffany J Braley, Kevin N Alschuler, Dawn M Ehde, Anna L Kratz","doi":"10.1007/s11136-025-03948-5","DOIUrl":"https://doi.org/10.1007/s11136-025-03948-5","url":null,"abstract":"<p><strong>Purpose: </strong>Fatigue is a common debilitating symptom of multiple sclerosis (MS). Ecological momentary assessment (EMA) provides a more reliable and sensitive assessment of fatigue outcomes relative to traditional recall surveys; however, the minimal clinically important difference (MCID) for EMA fatigue outcomes has not been established.</p><p><strong>Methods: </strong>MCIDs for EMA fatigue intensity and fatigue interference (0-10 numerical rating scale) that were assessed as outcomes in a pragmatic randomized clinical trial of three fatigue interventions were determined using two statistical approaches. The Patient Global Impression of Change (PGIC) and the Modified Fatigue Impact Scale (MFIS) were used within the anchor-based approach, and standard deviations (SD) and standard error of measurements (SEM) were examined within the distribution-based approach.</p><p><strong>Results: </strong>Pre- and post-treatment EMA data from 336 individuals with MS (76.2% female, 71.1% relapsing-remitting MS, mean age 48.8 (± 11.7) years, mean duration of MS 12.2 (± 9.8) years) were included in the analysis. Percent complete EMA data (4 EMAs/day) for 7 days were comparable pre- and post-treatment for fatigue intensity and for fatigue interference. Using the PGIC and MFIS anchors, change in EMA scores averaged 0.94 and 1.04 for fatigue intensity and 0.62 and 1.04 for fatigue interference, respectively. The SD and SEM for EMA fatigue intensity were 0.75 and 1.19 and for EMA fatigue interference were 0.83 and 1.30, respectively.</p><p><strong>Conclusion: </strong>Combining two approaches, our study contributes foundational information regarding meaningful change on EMA measures of fatigue, enabling effective use of EMA to assess fatigue treatment outcomes in a person-centered manner.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-03-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143693123","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":"Correction: Longitudinal relationships across sleep, physical activity, and mental wellbeing in early-to-mid-adolescence: a developmental cascades investigation.","authors":"Jose Marquez, Margarita Panayiotou, Reihaneh Farzinnia, Qiqi Cheng, Neil Humphrey","doi":"10.1007/s11136-025-03921-2","DOIUrl":"https://doi.org/10.1007/s11136-025-03921-2","url":null,"abstract":"","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-03-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143670375","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":"Relationship between core symptoms, function, and quality of life in colorectal cancer patients: a network analysis.","authors":"Wenqian Qi, Ruzhen Zhou, Qun Qiu, Jing Cui","doi":"10.1007/s11136-025-03946-7","DOIUrl":"https://doi.org/10.1007/s11136-025-03946-7","url":null,"abstract":"<p><strong>Purpose: </strong>To identify core symptoms in patients with colorectal cancer and investigate how these symptoms correlate with functional status and quality of life (QoL).</p><p><strong>Methods: </strong>This study included patients over 18 years of age who underwent therapeutic surgery for colorectal cancer with or without a stoma. The European Organization for Research and Treatment of Cancer - Quality of Life Questionnaire Core 30 (EORTC-QLQ C30) and Colorectal Cancer Module (EORTC-QLQ CR29) were used. Data analysis involved constructing networks using the qgraph package in R, identifying core symptoms based on strength centrality, and assessing centrality stability using the bootnet package.</p><p><strong>Results: </strong>The study included 511 patients: 321 without a stoma and 190 with a stoma. The QoL score for both groups were 55.06 and 55.09, showing no significant difference (p= 0.991). Fatigue and pain are common core symptoms in colorectal cancer surgery patients, whereas appetite loss (r_s = 0.37) is specific to those without a stoma and body image concerns (r_s = 1.06) are central issues for stoma patients. Notably, despite its prevalence and severity, anxiety was not a core symptom in either group of patients. In the QoL network, emotional functioning served as an intermediary link between QoL and core symptoms in patients without a stoma, whereas QoL was directly associated with core symptoms in patients with a stoma.</p><p><strong>Conclusion: </strong>Improving quality of life requires distinct clinical pathways depending on whether the patient has a stoma, necessitating individualized symptom management strategies in the early postoperative period.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-03-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143664385","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":"Family functioning and health-related quality of life in children and young adults with Marfan syndrome.","authors":"Lauren S Crafts, Lynn A Sleeper, Karen Uzark, Andrew M Atz, Timothy J Bradley, Elizabeth Cappella, Veronica Fettig, Georgeann Keh Teng Groh, Michelle S Hamstra, Christina Hartje-Dunn, Jami C Levine, Ian Lindsay, Aaron K Olson, Gretchen MacCarrick, Larry W Markham, Tonia Morrison, Reed E Pyeritz, Seda Tierney, Ronald V Lacro","doi":"10.1007/s11136-025-03944-9","DOIUrl":"https://doi.org/10.1007/s11136-025-03944-9","url":null,"abstract":"<p><strong>Purpose: </strong>Evaluate family functioning (FF) and associations with quality of life (QOL) in a large, multicenter cohort of children and young adults with Marfan syndrome (MFS) who participated in the Pediatric Heart Network (PHN) Marfan Trial.</p><p><strong>Methods: </strong>Of the 608 patients enrolled in the PHN Marfan Trial, 359 families completed one or more of the following: the General Functioning subscale of the Family Assessment Device (FAD), the Condition Management Ability module of the Family Management Measure (FaMM), and the Pediatric Quality of Life Inventory (PedsQL) at the final trial visit at three years. The correlations between FAD and FaMM scores and patient-related factors were examined. Linear regression was used to determine the relationship between FAD, FaMM, patient-related factors, and PedsQL.</p><p><strong>Results: </strong>25% of families by self-report and 9% of families by parent-report had impaired functioning (FAD score > 2). FAD and FaMM were inversely correlated (R=-0.41, p < 0.001). Higher (worse) FAD scores were correlated with more patient-reported symptoms (R = 0.17, p = 0.003) and with lower QOL (R=-0.28, p < 0.001), independent of other factors typically related to QOL.</p><p><strong>Conclusions: </strong>In patients with MFS, family dysfunction and more symptoms were independently associated with worse QOL. This suggests that interventions addressing family dysfunction and symptoms may positively impact QOL for patients and families living with MFS.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-03-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143658387","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":"Advancing response-shift assessment: insights and directions from a series of ISOQOL SIG meetings.","authors":"I-Chan Huang, Gudrun E Rohde, Justin N Baker","doi":"10.1007/s11136-025-03943-w","DOIUrl":"https://doi.org/10.1007/s11136-025-03943-w","url":null,"abstract":"","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-03-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143630746","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":"Patient experience of alpha-1 antitrypsin deficiency-associated liver disease: a qualitative study.","authors":"Virginia C Clark, Suna Park, Robert Krupnick, Nicole Sparling, Jason Ritchie, Chitra Karki, Justin A Reynolds","doi":"10.1007/s11136-025-03926-x","DOIUrl":"https://doi.org/10.1007/s11136-025-03926-x","url":null,"abstract":"<p><strong>Purpose: </strong>To elicit the signs and/or symptoms, and impacts on daily living experienced by patients with alpha-1 antitrypsin deficiency-associated liver disease (AATD-LD).</p><p><strong>Methods: </strong>A preliminary \"concept list\" of signs and/or symptoms, and impacts was developed from a targeted literature review, patient blog posts, and clinician interviews. Subsequently, one-to-one concept elicitation interviews involving English-speaking, US adults with AATD-LD and a protease inhibitor (Pi) ZZ or MZ genotype were conducted by trained interviewers following a central Institutional Review Board-approved discussion guide. An AATD-LD conceptual model was developed based on these findings. Concepts were \"most salient\" if reported by ≥ 8 patients with a mean bothersomeness/disturbance rating of ≥ 5, or \"highly salient\" if reported by > 5- < 8 patients with a mean bothersomeness/disturbance rating of ≥ 5 (scale: 0-10, 0: not at all bothersome/disturbing; 10: extremely bothersome/disturbing).</p><p><strong>Results: </strong>Fifteen patients were interviewed (median [range] age: 57 [28-78] years; Pi*ZZ, n = 12; Pi*MZ, n = 3). Of 41 signs and/or symptoms, the most salient were fatigue/tiredness, respiratory infections, shortness of breath, confusion/difficulty concentrating, and edema. Highly salient signs and/or symptoms were abdominal swelling, acid reflux, sleep disturbance, vomiting, abdominal pain/tenderness, itchiness, and back pain. Of 16 impacts, the most salient were on work and employment, leisure activities, and relationships. Impacts on mobility were highly salient.</p><p><strong>Conclusion: </strong>Several concepts were frequently reported as moderately/highly bothersome/disturbing. Further investigation of the experience of patients with AATD-LD in a large, diverse population across all fibrosis stages and genotypes is warranted. Clinical outcome assessments that capture salient concepts are needed.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-03-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143625689","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":"Psychometric properties of the Hebrew KIDSCREEN 52, 27 and 10 items: a cross-sectional study of self and parents reports in youth with and without physical disabilities.","authors":"Sharon Barak, Jana Landa, Etzyona Eisenstein, Dafna Guttman, Tamar Silberg","doi":"10.1007/s11136-025-03941-y","DOIUrl":"https://doi.org/10.1007/s11136-025-03941-y","url":null,"abstract":"<p><strong>Purpose: </strong>The KIDSCREEN health related quality of life (HRQoL) measures have not been validated in Hebrew and are under-studied in youth with physical disabilities. This study evaluated the psychometric properties of the Hebrew KIDSCREEN-52, 27, and 10, in self-report and parent versions, among youth with and without physical disabilities.</p><p><strong>Methods: </strong>Youth (ages 10-18) with and without physical disabilities, and their parents, completed the KIDSCREEN questionnaires. Disability-related data were collected using the Pediatric Evaluation of Disability Inventory (PEDI), along with psychological evaluations. Internal consistency was measured with Guttman's Lambada, and parent-child concordance using paired t-tests and intraclass correlation (ICC). Convergent validity was assessed with correlations and known group's and discriminative validity were tested by independent t-tests and receiver operating characteristic curve (ROC), respectively. Confirmatory factor analysis (CFI) was also conducted.</p><p><strong>Results: </strong>This study involved 566 child-parent dyads of youth without disabilities and 379 with disabilities, with a mean age of 12.42-13.54 years. Guttman's Lambada was acceptable (≥ 0.7) for all KIDSCREEN subscales. No significant differences were found between self- and parent-reports in the non-disability group, but parents scored lower in the disability group. ICC ranged from 0.5-to-0.90. Convergent validity was confirmed by significant associations between PEDI, psychological health and KIDSCREEN scales. Youth without disabilities reported better HRQoL than those with disabilities. The KIDSCREEN's discriminative ability ranged from very high accuracy in the self-reported KIDSCREEN-52 (AUC = 0.85) to moderate accuracy in the proxy-reported KIDSCREEN-10 (AUC = 0.683). The CFI showed overall good model fit.</p><p><strong>Conclusion: </strong>The Hebrew KIDSCREEN scales show reliability and validity but should be interpreted cautiously due to study limitations. Parent reports should only be primary when self-report isn't possible, as youth with disabilities often differ in their HRQoL evaluations. Youth without physical disabilities reported better HRQoL across multiple dimensions, highlighting the importance of evaluating HRQoL in youth with physical disabilities to address their unique needs.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-03-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143625716","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}