Quality of Life Research最新文献_第2页

IF 3.3 3区医学

Quality of Life Research Pub Date : 2025-03-27 DOI: 10.1007/s11136-025-03955-6

Verena Rass, Anna Berek, Klaus Altmann, Elisabeth Goettfried, Philipp Kindl, Raimund Helbok, Alois Schiefecker, Bettina Pfausler, Laura Zamarian, Ronny Beer

{"title":"Health-related quality of life after spontaneous subarachnoid hemorrhage - a prospective cohort study.","authors":"Verena Rass, Anna Berek, Klaus Altmann, Elisabeth Goettfried, Philipp Kindl, Raimund Helbok, Alois Schiefecker, Bettina Pfausler, Laura Zamarian, Ronny Beer","doi":"10.1007/s11136-025-03955-6","DOIUrl":"https://doi.org/10.1007/s11136-025-03955-6","url":null,"abstract":"Purpose: Reduced health-related quality of life (HR-QoL) is common after spontaneous subarachnoid hemorrhage (SAH). Here, we aimed to describe the prevalence of HR-QoL impairment one year after SAH and to identify associated factors.Methods: In this prospective cohort study, HR-QoL was assessed in 183 patients one year after SAH. We used the Short-Form-36 (SF-36) questionnaire, which consists of eight health domains that can be subdivided into mental and physical health components. Participants responded to scales on subjective attention deficit, mental health symptoms, and fatigue. Functional outcome was assessed with the modified Rankin Scale (mRS). Multivariable regression analysis was used to identify factors associated with reduced HR-QoL (MCS or PCS < 40).Results: Patients were 53 years of age (IQR, 46-61) and presented with a median Hunt&Hess score of 2 (2-3). HR-QoL was reduced in 66/183 patients (36%) with the highest abnormality in physical and emotional role. A lower Hunt&Hess score (p = 0.036), female sex (p = 0.017), self-reported depression (p = 0.001), fatigue (p < 0.001), and reduction of drive (p = 0.019) were associated with overall reduced HR-QoL and explained 68.9% of the observed variance. 26% (n = 48) scored below the normal range on the MCS, and independent associations emerged for self-reported anxiety and depression, fatigue, and reduction of drive. A reduction in the PCS was reported by 35 (19%) patients and independent associations were found for worse three-month functional outcome and fatigue.Conclusion: One in three patients reported a reduction in HR-QoL one year after SAH. Mental health problems and fatigue had a significant impact on HR-QoL.","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-03-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143731314","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}

引用次数: 0

Measuring the health outcomes of Chinese ischemic stroke patients based on the data from a longitudinal multi-center study. 基于纵向多中心研究数据的中国缺血性脑卒中患者健康结局测量

IF 3.3 3区医学

Quality of Life Research Pub Date : 2025-03-27 DOI: 10.1007/s11136-025-03957-4

Luying Wang, Xin Guan, Jiting Zhou, Hongfei Hu, Wei Liu, Qiran Wei, Yining Huang, Weiping Sun, Xuejing Jin, Hongchao Li

{"title":"Measuring the health outcomes of Chinese ischemic stroke patients based on the data from a longitudinal multi-center study.","authors":"Luying Wang, Xin Guan, Jiting Zhou, Hongfei Hu, Wei Liu, Qiran Wei, Yining Huang, Weiping Sun, Xuejing Jin, Hongchao Li","doi":"10.1007/s11136-025-03957-4","DOIUrl":"https://doi.org/10.1007/s11136-025-03957-4","url":null,"abstract":"Purpose: Faced with scarcity of large-scale health measurement study in China, the study aims to provide health outcomes evidence from ischemic stroke patients.Methods: Data were collected from a prospective multi-center real-world study held from March 2015 to December 2018. Health-related quality of life (HRQoL) was assessed at admission, hospital discharge, 90 ± 14 days after medication treatment, and 360 ± 28 days after medication treatment. Baseline characteristics of patients were summarized. Mean values and standard deviation (SD) of EQ-5D utility index scores, VAS values, and NIHSS scores were reported. Rank-sum test was applied to analyze the differences of HRQoL among patient groups. Mix-effects regression was used to investigate the impact factors.Results: At the baseline visit, a total of 9978 patients with a mean age of 64.0 years were included. The mean utility index scores recorded at admission, discharge, 90 ± 14 days after therapy initiated, and 360 ± 28 days after therapy initiated were 0.546 (SD = 0.327), 0.709 (SD = 0.306), 0.801 (SD = 0.259), and 0.846 (SD = 0.237), respectively. Differences among sex and TOAST classification subgroups were observed. The mean utility index scores stratified by mRS levels ranged from 0.983 (SD = 0.076) to 0.058 (SD = 0.167) for level 0 to level 5. The mean NIHSS scores were 5.3 (SD = 4.98) and 3.6 (SD = 4.24) at admission and discharge.Conclusion: The impact of ischemic stroke on patient's HRQoL is significant, particularly during the acute phase. Results from the study are well representative and can be utilized in health policy making, economic evaluations and other comparison studies. The study was registered with ClinicalTrials.gov (NCT02470624) in October 2015.","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-03-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143731317","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}

引用次数: 0

The caregiver burden of idiopathic inflammatory myopathies. 特发性炎性肌病的照顾者负担。

IF 3.3 3区医学

Quality of Life Research Pub Date : 2025-03-26 DOI: 10.1007/s11136-025-03953-8

Parker Brady, Roberto Sergio Hernandez, Amber Salter, Catherine Hua, Lynn Wilson, Manuel Lubinus, Yuan-Pai Hu, Dhruv Nandakumar, Abhiram R Bhashyam, Salman Bhai

{"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":"Purpose: 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).Methods: 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.Results: 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.Conclusion: 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.","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}

引用次数: 0

Reporting heterogeneity and health measurement bias in older adults: nationwide cross-sectional study. 老年人报告异质性和健康测量偏倚：全国横断面研究

IF 3.3 3区医学

Quality of Life Research Pub Date : 2025-03-25 DOI: 10.1007/s11136-025-03954-7

Qingwen Deng, Yu Xia, Yi Yang, Shimeng Liu, Yingyao Chen

{"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":"Purpose: 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.Methods: 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.Results: 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.Conclusion: 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.","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}

引用次数: 0

Disutilities of treatment-related attributes for type 2 diabetes mellitus: a systematic review. 2型糖尿病治疗相关属性的缺点：一项系统综述。

IF 3.3 3区医学

Quality of Life Research Pub Date : 2025-03-25 DOI: 10.1007/s11136-025-03945-8

Shitong Xie, Xinran Liu, Meixuan Li, Jing Wu

{"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":"Objectives: To synthesize the literature on eliciting disutilities associated with treatment-related attributes in type 2 diabetes (T2DM).Methods: 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.Results: 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.Conclusions: 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.","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}

引用次数: 0

Determining minimal clinically important differences in ecological momentary assessment measures of fatigue in people with multiple sclerosis. 确定多发性硬化症患者疲劳的生态瞬时评估措施的最小临床重要差异。

IF 3.3 3区医学

Quality of Life Research Pub Date : 2025-03-22 DOI: 10.1007/s11136-025-03948-5

Sonia Sharma, Tiffany J Braley, Kevin N Alschuler, Dawn M Ehde, Anna L Kratz

{"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":"Purpose: 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.Methods: 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.Results: 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.Conclusion: 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.","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}

引用次数: 0

Correction: Longitudinal relationships across sleep, physical activity, and mental wellbeing in early-to-mid-adolescence: a developmental cascades investigation. 更正：青少年早期至中期睡眠、身体活动和心理健康之间的纵向关系：一项发展级联调查。

IF 3.3 3区医学

Quality of Life Research Pub Date : 2025-03-20 DOI: 10.1007/s11136-025-03921-2

Jose Marquez, Margarita Panayiotou, Reihaneh Farzinnia, Qiqi Cheng, Neil Humphrey

引用次数: 0

Relationship between core symptoms, function, and quality of life in colorectal cancer patients: a network analysis. 结直肠癌患者核心症状、功能和生活质量的关系：网络分析

IF 3.3 3区医学

Quality of Life Research Pub Date : 2025-03-19 DOI: 10.1007/s11136-025-03946-7

Wenqian Qi, Ruzhen Zhou, Qun Qiu, Jing Cui

{"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":"Purpose: To identify core symptoms in patients with colorectal cancer and investigate how these symptoms correlate with functional status and quality of life (QoL).Methods: 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.Results: 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 (rs = 0.37) is specific to those without a stoma and body image concerns (rs = 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.Conclusion: 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.","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}

引用次数: 0

Family functioning and health-related quality of life in children and young adults with Marfan syndrome. 马凡氏综合征儿童和青年的家庭功能和健康相关生活质量

IF 3.3 3区医学

Quality of Life Research Pub Date : 2025-03-18 DOI: 10.1007/s11136-025-03944-9

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

{"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":"Purpose: 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.Methods: 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.Results: 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.Conclusions: 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.","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}

引用次数: 0

Advancing response-shift assessment: insights and directions from a series of ISOQOL SIG meetings. 推进响应转移评估：来自ISOQOL SIG系列会议的见解和方向。

IF 3.3 3区医学

Quality of Life Research Pub Date : 2025-03-14 DOI: 10.1007/s11136-025-03943-w

I-Chan Huang, Gudrun E Rohde, Justin N Baker

引用次数: 0