Quality of Life Research最新文献

{"title":"Examining tools for assessing the impact of chronic pain on emotional functioning in children and young people with cerebral palsy: stakeholder preference and recommendations for modification.","authors":"Meredith Grace Smith, Rachel J Gibson, Remo N Russo, Sophie Karanicolas, Adrienne R Harvey","doi":"10.1007/s11136-024-03693-1","DOIUrl":"10.1007/s11136-024-03693-1","url":null,"abstract":"<p><strong>Purpose: </strong>To firstly identify tools for assessing the impact of chronic pain on emotional functioning in children and young people with cerebral palsy (CP), and secondly identify suggestions to improve their relevance, comprehensiveness, comprehensibility and feasibility for the CP population. Improving assessment of the impact of pain on emotional functioning can enhance quality of life by improving access to interventions for pain-related physical disability, anxiety and depression.</p><p><strong>Methods: </strong>Ethics approval was granted through the Women's and Children's Health Network Human Research Ethics Committee (2022/HRE00154). A mixed methods study with people with lived experience and clinicians, and guided by the Consensus-based Standards for Measurement Instruments (COSMIN), was undertaken. An online survey identified the highest rated tools for validation and/or modification for young people with CP and chronic pain. Focus groups and interviews investigated content validity and feasibility of the tools identified as highest rated.</p><p><strong>Results: </strong>The Fear of Pain Questionnaire for Children-SF (FOPQ-C-SF) and Modified Brief Pain Inventory (mBPI) were the highest rated for pain coping and multidimensional assessment (respectively) from the online survey (n = 61) of eight tools presented. Focus group and interview data (n = 30), including 58 unique modification suggestions, were coded to six categories: accessibility, comprehensibility, feasibility, relevance, presentation and comprehensiveness.</p><p><strong>Conclusion: </strong>Potential modifications have been identified to improve the appropriateness and feasibility of the FOPQ-C-SF and mBPI for children and young people with CP. Future research should implement and test these modifications, prioritising the involvement of people with lived experience to ensure their needs are met alongside clinicians.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":null,"pages":null},"PeriodicalIF":3.3,"publicationDate":"2024-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11286630/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141096998","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":"Retraction Note: Neurocognitive impairment and patient-proxy agreement on health-related quality of life evaluations in recurrent high-grade glioma patients.","authors":"Ivan Caramanna, Martin Klein, Martin van den Bent, Ahmed Idbaih, Wolfgang Wick, Martin J B Taphoorn, Linda Dirven, Andrew Bottomley, Jaap C Reijneveld","doi":"10.1007/s11136-024-03696-y","DOIUrl":"10.1007/s11136-024-03696-y","url":null,"abstract":"","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":null,"pages":null},"PeriodicalIF":3.3,"publicationDate":"2024-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11286618/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141180028","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":"Translation and linguistic validation of 24 PROMIS item banks into French.","authors":"Sara Ahmed, Emily Parks-Vernizzi, Barbara Perez, Benjamin Arnold, Abigail Boucher, Mushirah Hossenbaccus, Helena Correia, Susan J Bartlett","doi":"10.1007/s11136-024-03690-4","DOIUrl":"10.1007/s11136-024-03690-4","url":null,"abstract":"<p><strong>Purpose: </strong>The Patient-Reported Outcome Measurement Information System (PROMIS®) was developed to provide reliable, valid, and normed item banks to measure health. The item banks provide standardized scores on a common metric allowing for individualized, brief assessment (computerized adaptive tests), short forms (e.g. heart failure specific), or profile assessments (e.g. PROMIS-29). The objective of this study was to translate and linguistically validate 24 PROMIS adult item banks into French and highlight cultural nuances arising during the translation process.</p><p><strong>Methods: </strong>We used the FACIT translation methodology. Forward translation into French by two native French-speaking translators was followed by reconciliation by a third native French-speaking translator. A native English-speaking translator fluent in French then completed a back translation of the reconciled version from French into English. Three independent reviews by bilingual translators were completed to assess the clarity and consistency of terminology and equivalency across the English source and French translations. Reconciled versions were evaluated in cognitive interviews for conceptual and linguistic equivalence.</p><p><strong>Results: </strong>Twenty-four adult item banks were translated: 12 mental health, 10 physical health, and two social health. Interview data revealed that 577 items of the 590 items translated required no revisions. Conceptual and linguistic differences were evident for 11 items that required iterations to improve conceptual equivalence and two items were revised to accurately reflect the English source.</p><p><strong>Conclusion: </strong>French translations of 24 item banks were created for routine clinical use and research. Initial translation supported conceptual equivalence and comprehensibility. Next steps will include validation of the item banks.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":null,"pages":null},"PeriodicalIF":3.3,"publicationDate":"2024-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11286690/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141306732","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":"Moving towards increased implementation of evidence-based measurements through comprehensive and transparent reporting: the PRISMA-COSMIN 2024 reporting guideline.","authors":"Martijn J L Bours","doi":"10.1007/s11136-024-03667-3","DOIUrl":"10.1007/s11136-024-03667-3","url":null,"abstract":"","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":null,"pages":null},"PeriodicalIF":3.3,"publicationDate":"2024-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141559490","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":"Response to letters in QoLR.","authors":"Ellen B M Elsman, Lidwine B Mokkink, Martin Offringa","doi":"10.1007/s11136-024-03687-z","DOIUrl":"10.1007/s11136-024-03687-z","url":null,"abstract":"","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":null,"pages":null},"PeriodicalIF":3.3,"publicationDate":"2024-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141559492","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":"German adult population norm values of the short Warwick Edinburgh mental well-being scale (SWEMWBS).","authors":"Diana Peitz, Heike Hoelling, Sabine Born, Angelika Schaffrath Rosario, Caroline Cohrdes","doi":"10.1007/s11136-024-03695-z","DOIUrl":"10.1007/s11136-024-03695-z","url":null,"abstract":"<p><strong>Purpose: </strong>The Warwick-Edinburgh Mental Well-Being Scale represents an internationally established inventory to assess population mental well-being. Particularly the short form (SWEMWBS) is recommended for use in Mental Health Surveillance. In the present study, we present normative data of the SWEMWBS for the German adult population.</p><p><strong>Methods: </strong>Data from the telephone survey German Health Update (GEDA) in 2022 representative of the German adult population (48.9% women, 18-98 years) was processed to estimate SWEMWBS percentile norm values, T-values, z-values and internationally comparable logit-transformed raw scores for the total sample (N = 5,606) as well as stratified by sex, age group and sex with age group combinations.</p><p><strong>Results: </strong>The average mental well-being was comparable to that of other European countries at M = 27.3 (SD = 4.0; logit-transformed: M = 24.79, SD = 3.73). To provide a benchmark, the cut off for low well-being was set at the 15th percentile (raw score: 23; logit-transformed: 20.73), for high well-being at the 85th percentile (raw score: 32; logit-transformed: 29.31).</p><p><strong>Conclusion: </strong>The present study provides SWEMWBS norm values for the German adult population. The normative data can be used for national and international comparisons on a population level to initiate, plan and evaluate mental well-being promotion and prevention measures.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":null,"pages":null},"PeriodicalIF":3.3,"publicationDate":"2024-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11286698/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141262698","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":"Neuropsychological and psychiatric outcomes among community-dwelling young Chinese older adults affected by falls in the past year with and without vision impairment.","authors":"Xia Cao, Hui Chen, Jiansong Zhou","doi":"10.1007/s11136-024-03751-8","DOIUrl":"https://doi.org/10.1007/s11136-024-03751-8","url":null,"abstract":"<p><strong>Objective: </strong>This study was to investigate the differences between young older adults with and without vision impairment on neuropsychological and psychiatric outcomes following falls during the past year and to identify predictors of cognitive decline or mental distress.</p><p><strong>Methods: </strong>A secondary analysis of 668 young older Chinese adults aged 65 ∼ 79 years old with a history of falls was conducted from the cross-sectional survey data in the 2018 wave of the Chinese Longitudinal Health Longevity Survey (CLHLS).</p><p><strong>Results: </strong>Participants with vision impairment scored significantly higher on anxiety and depression and lower on cognitive function and SWB than those without vision impairment. And vision impairment was a significant predictor of adverse outcomes for all four neuropsychological and psychiatric measures.</p><p><strong>Conclusion: </strong>Neurocognitive deficits, psychological problems, and decreased self-sufficiency are quite common among community-dwelling older adults with visual impairment who have a history of falls within a year.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":null,"pages":null},"PeriodicalIF":3.3,"publicationDate":"2024-07-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141860719","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":"Overall side effect assessment of oxaliplatin toxicity in rectal cancer patients in NRG oncology/NSABP R04.","authors":"John Devin Peipert, Jessica Roydhouse, Mourad Tighiouart, Norah Lynn Henry, Sungjin Kim, Ron D Hays, Andre Rogatko, Greg Yothers, Patricia A Ganz","doi":"10.1007/s11136-024-03746-5","DOIUrl":"https://doi.org/10.1007/s11136-024-03746-5","url":null,"abstract":"<p><strong>Purpose: </strong>Regulatory guidance suggests capturing patient-reported overall side effect impact in cancer trials. We examined whether the Functional Assessment of Cancer Therapy (FACT) GP5 item (\"I am bothered by side effects of treatment\") post-neoadjuvant chemotherapy/radiotherapy differed between oxaliplatin vs. non- oxaliplatin arms in the National Surgical Adjuvant Breast and Bowel Project (NSABP) R-04 trial of stage II-III rectal cancer patients.</p><p><strong>Methods: </strong>The R-04 neoadjuvant trial compared local-regional tumor control between patients randomized to receive 5-fluorouracil or capecitabine with radiation, with or without oxaliplatin (4 treatment arms). Participants completed surveys at baseline and immediately after chemoradiotherapy. GP5 has a 5-point response scale: \"Not at all\" (0), \"A little bit\" (1), \"Somewhat\" (2), \"Quite a bit\" (3), and \"Very much\" (4). Logistic regression compared the odds of reporting moderate-high side effect impact (GP5 2-4) between patients receiving oxaliplatin or not after chemoradiotherapy, controlling for relevant patient characteristics. We examined associations between GP5 and other patient-reported outcomes reflecting side effects.</p><p><strong>Results: </strong>Analyses were performed among 1132 study participants. Participants receiving oxaliplatin were 1.58 times (95% CI: 1.22-2.05) more likely to report moderate-high side effect bother at post-chemotherapy/radiation. In both arms, worse overall side effect impact was associated with patient-reported diarrhea, nausea, vomiting, and peripheral sensory neuropathy (p < 0.01 for all).</p><p><strong>Conclusion: </strong>This secondary analysis of R-04 found that GP5 distinguished between patients receiving oxaliplatin or not as part of their post-neoadjuvant chemoradiotherapy, adding patient-centric evidence on the reduced tolerability of oxaliplatin and demonstrating that GP5 is sensitive to known toxicity differences between treatments.</p><p><strong>Clinicaltrials: </strong>GOV: NCT00058474.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":null,"pages":null},"PeriodicalIF":3.3,"publicationDate":"2024-07-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141856291","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":"Measurement invariance of the PROMIS emotional distress and subjective well-being domains among autistic and General Population adolescents.","authors":"Elizabeth A Kaplan-Kahn, Rachel M Benecke, Whitney Guthrie, Benjamin E Yerys, Laura Graham Holmes, Judith S Miller","doi":"10.1007/s11136-024-03742-9","DOIUrl":"https://doi.org/10.1007/s11136-024-03742-9","url":null,"abstract":"<p><strong>Purpose: </strong>Quality of life (QoL) is identified as a clinical and research priority by the autistic community. Researchers have the responsibility to ensure that instruments used to measure QoL do so reliably and accurately among autistic participants.</p><p><strong>Methods: </strong>Our study evaluated measurement invariance of Emotional Distress (Depression, Anxiety, Anger, Psychological Stress) and Subjective Well-Being (Life Satisfaction, Positive Affect, and Meaning & Purpose) scales of the Patient-Reported Outcomes Measurement Information System (PROMIS) among groups of autistic (N=140, n per scale=132-140) and general population (N=1,224, n per scale=406-411) teenagers (14-17 years). These scales were included in the PROMIS Autism Battery-Lifespan, which uses PROMIS scales to measure QoL domains most relevant for autistic people.</p><p><strong>Results: </strong>Multi-group confirmatory factor analyses using permutation tests demonstrated that Depression and Positive Affect scales exhibited scalar invariance between groups, indicating that scores can be meaningfully compared across autistic and general population teens. Anger and Psychological Stress scales demonstrated metric invariance between groups, indicating that these scales measure the same latent trait in both groups, but group comparisons are not supported.</p><p><strong>Conclusion: </strong>We provide guidance as to how these scales can be used in psychometrically supported ways to capture constructs relevant for understanding QoL among autistic teens.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":null,"pages":null},"PeriodicalIF":3.3,"publicationDate":"2024-07-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141856290","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 faces of Long-COVID: interplay of symptom burden with socioeconomic, behavioral and healthcare factors.","authors":"Carolyn E Schwartz, Katrina Borowiec, Bruce D Rapkin","doi":"10.1007/s11136-024-03739-4","DOIUrl":"https://doi.org/10.1007/s11136-024-03739-4","url":null,"abstract":"<p><strong>Aims: </strong>The long-term effects of COVID-19 (Long COVID) include 19 symptoms ranging from mild to debilitating. We examined multidimensional correlates of Long COVID symptom burden.</p><p><strong>Methods: </strong>This study focused on participants who reported having had COVID in Spring 2023 (n = 656; 85% female, mean age = 55, 59% college). Participants were categorized into symptom-burden groups using Latent Profile Analysis of 19 Long-COVID symptoms. Measures included demographics; quality of life and well-being (QOL); and COVID-specific stressors. Bivariate and multivariate associations of symptom burden were examined.</p><p><strong>Results: </strong>A three-profile solution reflected low, medium, and high symptom burden, aligning with diagnosis confirmation and treatment by a healthcare provider. Higher symptom burden was associated with reporting more comorbidities; being unmarried, difficulty paying bills, being disabled from work, not having a college degree, younger age, higher body mass index, having had COVID multiple times, worse reported QOL, greater reported financial hardship and worry; maladaptive coping, and worse healthcare disruption, health/healthcare stress, racial-inequity stress, family-relationship problems, and social support. Multivariate modeling revealed that financial hardship, worry, risk-taking, comorbidities, health/healthcare stress, and younger age were risk factors for higher symptom burden, whereas social support and reducing substance use were protective factors.</p><p><strong>Conclusions: </strong>Long-COVID symptom burden is associated with substantial, modifiable social and behavioral factors. Most notably, financial hardship was associated with more than three times the risk of high versus low Long-COVID symptom burden. These findings suggest the need for multi-pronged support in the absence of a cure, such as symptom palliation, telehealth, social services, and psychosocial support.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":null,"pages":null},"PeriodicalIF":3.3,"publicationDate":"2024-07-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141793188","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}