Quality of Life Research最新文献

{"title":"Health-related quality of life in 205 children with arthrogryposis multiplex congenita.","authors":"Shahrzad Nematollahi, Emmanouil Rampakakis, Michael Amara, Reggie C Hamdy, Frank Rauch, Lauren C Hyer, Michelle A James, Haluk Altiok, Ellen Raney, Jonathan Pellett, Cary Mielke, Sarah B Nossov, Sena Tavukcu, Philip F Giampietro, Noémi Dahan-Oliel","doi":"10.1007/s11136-024-03808-8","DOIUrl":"10.1007/s11136-024-03808-8","url":null,"abstract":"<p><strong>Purpose: </strong>Arthrogryposis multiplex congenita (AMC) describes a heterogeneous group of rare congenital conditions. Health-related quality of life (HRQL) may be reduced in AMC due to broadly heterogeneous physical impairments and participation limitations. This study described HRQL in children and youth with AMC, compared HRQL between child self- and parent-proxy reports, and identified factors associated with better/worse HRQL.</p><p><strong>Methods: </strong>Data on 205 children with AMC (age 8-21 years) from a North American AMC registry across eight hospital sites was used. HRQL was assessed cross-sectionally using the Patient Reported Outcome Measurement Information System (PROMIS) and European Quality of Life-5 Dimensions-Youth-3 Levels (EQ-5D-Y-3 L) by self-report, parent proxy-report or both.</p><p><strong>Results: </strong>Mean child-reported PROMIS T-scores were significantly lower than the normal mean for the Upper Extremity (mean = 33.0) and Mobility (mean = 37.2) but in the normal range for Pain Interference (mean = 46.6) and Peer Relationships (mean = 51.7). A lot of problems in EQ-5D-Y-3 L was reported by 37% in Feeling Worried/ Sad/ Unhappy, 46% in Having Pain/Discomfort, 50% in Doing Usual Activities, 56% in Mobility, and 57% in Looking After Myself. Compared to child-report, parents reported significantly worse PROMIS T-scores and higher problems in EQ-5D domains. Wheelchair use, being small for gestational age, prolonged hospitalization after birth, increased number of orthopedic surgeries, and caregiver's stress were associated with lower HRQL scores.</p><p><strong>Conclusion: </strong>Findings indicate the importance of considering both the child's and parents' reports of HRQL, and to provide multimodal interventions that focus on the effect of childhood and parental characteristics to promote HRQL among children with AMC.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"247-260"},"PeriodicalIF":3.3,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142473233","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Development of a prediction model for clinically-relevant fatigue: a multi-cancer approach.","authors":"Dhirendra Adiprakoso, Dimitris Katsimpokis, Simone Oerlemans, Nicole P M Ezendam, Marissa C van Maaren, Janine A van Til, Thijs G W van der Heijden, Floortje Mols, Katja K H Aben, Geraldine R Vink, Miriam Koopman, Lonneke V van de Poll-Franse, Belle H de Rooij","doi":"10.1007/s11136-024-03807-9","DOIUrl":"10.1007/s11136-024-03807-9","url":null,"abstract":"<p><strong>Purpose: </strong>Fatigue is the most prevalent symptom across cancer types. To support clinicians in providing fatigue-related supportive care, this study aims to develop and compare models predicting clinically relevant fatigue (CRF) occurring between two and three years after diagnosis, and to assess the validity of the best-performing model across diverse cancer populations.</p><p><strong>Methods: </strong>Patients with non-metastatic bladder, colorectal, endometrial, ovarian, or prostate cancer who completed a questionnaire within three months after diagnosis and a subsequent questionnaire between two and three years thereafter, were included. Predictor variables included clinical, socio-demographic, and patient-reported variables. The outcome was CRF (EORTC QLQC30 fatigue ≥ 39). Logistic regression using LASSO selection was compared to more advanced Machine Learning (ML) based models, including Extreme gradient boosting (XGBoost), support vector machines (SVM), and artificial neural networks (ANN). Internal-external cross-validation was conducted on the best-performing model.</p><p><strong>Results: </strong>3160 patients were included. The logistic regression model had the highest C-statistic (0.77) and balanced accuracy (0.65), both indicating good discrimination between patients with and without CRF. However, sensitivity was low across all models (0.22-0.37). Following internal-external validation, performance across cancer types was consistent (C-statistics 0.73-0.82).</p><p><strong>Conclusion: </strong>Although the models' discrimination was good, the low balanced accuracy and poor calibration in the presence of CRF indicates a relatively high likelihood of underdiagnosis of future CRF. Yet, the clinical applicability of the model remains uncertain. The logistic regression performed better than the ML-based models and was robust across cohorts, suggesting an advantage of simpler models to predict CRF.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"231-245"},"PeriodicalIF":3.3,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11802682/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142626755","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":"Correction: Development of an ultra-short measure of eight domains of health-related quality of life for research and clinical care: the patient-reported outcomes measurement information system^Ⓡ PROMIS^Ⓡ-16 profile.","authors":"Maria Orlando Edelen, Chengbo Zeng, Ron D Hays, Anthony Rodriguez, Janel Hanmer, Judy Baumhauer, Judy Cella, Bryce B Reeve, Patricia M Herman","doi":"10.1007/s11136-024-03762-5","DOIUrl":"10.1007/s11136-024-03762-5","url":null,"abstract":"","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"17-18"},"PeriodicalIF":3.3,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11802702/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142081377","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":"Applicability of the PRISMA-COSMIN guidelines for systematic reviews of outcome measurement instruments to ISOQOL's special interest group for clinical practice.","authors":"Angela C Wolff, Elizabeth J Austin, Amy M Cizik","doi":"10.1007/s11136-024-03815-9","DOIUrl":"10.1007/s11136-024-03815-9","url":null,"abstract":"","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"53-54"},"PeriodicalIF":3.3,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142786665","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 from the ISOQOL SIGs regarding PRISMA-COSMIN for OMIs 2024.","authors":"Ellen B M Elsman, Lidwine B Mokkink, Martin Offringa","doi":"10.1007/s11136-024-03869-9","DOIUrl":"10.1007/s11136-024-03869-9","url":null,"abstract":"","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"61-62"},"PeriodicalIF":3.3,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142786755","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":"A landscape review to identify what matters to patients with thrombotic cardiovascular diseases and patient-reported outcome instruments which can be used to capture the patient experience.","authors":"Alexandra I Barsdorf, John Fastenau, Shannon Lee, Xiaoyan Li, Ellen O'Brien, Blue Stevenson, Brandon Becker","doi":"10.1007/s11136-024-03790-1","DOIUrl":"10.1007/s11136-024-03790-1","url":null,"abstract":"<p><strong>Purpose: </strong>Thrombotic cardiovascular diseases profoundly impact patients' health-related quality of life (HRQoL). However, patient-reported outcome (PRO) instruments that are disease-specific or antithrombotic-treatment focused, developed according to US Food and Drug Administration (FDA) guidance on PROs, and can be used in clinical trials, are lacking. The aim of this study was to understand concepts important to patients diagnosed with coronary artery disease (CAD) or acute coronary syndrome (ACS), atrial fibrillation (AF), or stroke who require antithrombotic treatment for reducing risk of future thrombotic events (indications being evaluated for an investigational new drug), identify PROs that measure relevant symptoms and impacts, and determine acceptability of PROs from a health technology assessment (HTA) perspective.</p><p><strong>Methods: </strong>A landscape review, conducted between January 2009 and October 2020, included a search of qualitative literature (OVID), a review of PRO instruments using multiple sources (e.g., OVID and clinical trials databases), and a survey of HTA decisions for antithrombotic medications.</p><p><strong>Results: </strong>The qualitative literature review identified 27 publications used to develop a high-level conceptual summary of symptoms and HRQoL impacts reported by patients. The instrument landscape review indicated that generic PROs have been utilized for thrombotic indications, but disease-specific, fit-for-purpose instruments are lacking, and the HTA review revealed that although HTA agencies discussed PRO instruments, evidence of specific recommendations was not found.</p><p><strong>Conclusion: </strong>To ensure patients' experiences, perspectives, and priorities are incorporated into drug development and evaluation, a core set of PROs for thrombotic indications that meet health authority guidance and are acceptable to HTA agencies is needed.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"101-111"},"PeriodicalIF":3.3,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11802703/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142688591","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":"Correction: A short scale to measure health-related quality of life after traumatic brain injury in children and adolescents (QOLIBRI-OS-KID/ADO): psychometric properties and German reference values.","authors":"Marina Zeldovich, Leonie Krol, Inga K Koerte, Katrin Cunitz, Matthias Kieslich, Marlene Henrich, Knut Brockmann, Anna Buchheim, Michael Lendt, Christian Auer, Axel Neu, Joenna Driemeyer, Ulrike Wartemann, Claudius Thomé, Daniel Pinggera, Steffen Berweck, Michaela V Bonfert, Joachim Suss, Holger Muehlan, Nicole von Steinbuechel","doi":"10.1007/s11136-024-03845-3","DOIUrl":"10.1007/s11136-024-03845-3","url":null,"abstract":"","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"287-288"},"PeriodicalIF":3.3,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11802686/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142771468","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":"Uncovering the story within the story: a scoping review of response shift in qualitative research.","authors":"Carolyn E Schwartz, I-Chan Huang, Gudrun Rohde, Richard L Skolasky","doi":"10.1007/s11136-024-03803-z","DOIUrl":"10.1007/s11136-024-03803-z","url":null,"abstract":"<p><strong>Purpose: </strong>The role of qualitative research in response-shift research has not been well characterized. This scoping review summarizes the status of qualitative studies on response shift.</p><p><strong>Methods: </strong>A scoping review of the medical literature was done using the keywords \"response shift\" and \"qualitative\" or \"interview.\" After excluding ineligible works, each retained article was rated by two independent raters according to the modified Critical Appraisal Skill Program (CASP) criteria. A synthesis of adjudicated review results further characterized the articles.</p><p><strong>Results: </strong>The search yielded 50 unique articles published from 1991 to 2023, 39 of which were retained after applying exclusion criteria. Most (69%) had the highest possible CASP score. Studies involved a broad range of patients by diagnosis or therapeutic context, caregivers, and healthcare professionals. While studies were often purely descriptive, many addressed components of response-shift theory or assumptions of response-shift methods. Study goals varied by design, time-focus (i.e., retrospective, present-focus or prospective), and by whether response-shift hypotheses were planned or post-hoc. The theoretical value added by the qualitative process involved examining the cognitive/emotional processes underlying quality-of-life ratings and response shifts. The methodological value added by the qualitative process facilitates understanding measurement error and non-responsiveness, and whether the methods used reflect the researchers' presumptions.</p><p><strong>Conclusion: </strong>The use of qualitative methods in response-shift research yields a nuanced understanding of what response-shift \"looks like\" in different patient populations, thereby helping to translate results more directly to clinical experience. Studies contributed to response-shift theory or methods in ways not easily captured by purely quantitative research.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"131-150"},"PeriodicalIF":3.3,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142547013","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":"Longitudinal validation of the PROMIS-16 in a sample of adults in the United States with back pain.","authors":"Anthony Rodriguez, Chengbo Zeng, Ron D Hays, Patricia M Herman, Maria O Edelen","doi":"10.1007/s11136-024-03826-6","DOIUrl":"10.1007/s11136-024-03826-6","url":null,"abstract":"<p><strong>Purpose: </strong>This longitudinal study evaluates whether the Patient-Reported Outcomes Measurement and Information System (PROMIS)-16 domains capture average change over time comparable to the PROMIS-29 + 2 and have similar associations with change in overall health rating and two disability indices.</p><p><strong>Methods: </strong>Data were collected using Amazon's Mechanical Turk at baseline, 3 months, and 6 months among individuals reporting chronic low back pain. The analytic sample includes respondents who completed baseline and at least one follow-up assessment (N = 1137). We estimated latent growth models for eight PROMIS domains and compared growth parameters between the PROMIS-16 and PROMIS 29 + 2 with a z-test. Additionally, for each domain, random intercept and slope scores for individuals were computed for the PROMIS-29 + 2 and PROMIS-16 and correlated to estimate concordance. Using growth parameters for physical function and pain interference, we predicted average change in the Oswestry Disability Index (ODI), Roland Morris Disability Questionnaire (RMDQ), the overall health rating, and compared regression coefficients between the PROMIS-16 and PROMIS 29 + 2.</p><p><strong>Results: </strong>All growth models fit the data well. Intercept and slope parameters were statistically comparable (p's > 0.05) in magnitude across all domains between the PROMIS-16 and PROMIS-29 + 2. Correlations between random intercept and slope scores for individuals across domains were high. Additionally, the regression coefficients between slopes for pain interference and physical function and ODI, RMDQ, and overall health rating were statistically comparable (p's > 0.05) between the PROMIS-16 and PROMIS 29 + 2.</p><p><strong>Conclusion: </strong>Results provide between-level support for the longitudinal and predictive validity of the PROMIS-16. Similar average baseline scores and changes over time were observed between PROMIS-16 and PROMIS-29 + 2. Further, average change estimates comparably predicted average change in distal outcomes. This work provides evidence supporting the utility of the PROMIS-16 as a viable, short-profile option for use in clinical and research settings.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"35-42"},"PeriodicalIF":3.3,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11802292/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142591335","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":"PRISMA-COSMIN for OMIs 2024: response from ISOQOL's child health special interest group.","authors":"Harpreet Chhina, Sumedh Bele, Zephanie Tyack","doi":"10.1007/s11136-024-03801-1","DOIUrl":"10.1007/s11136-024-03801-1","url":null,"abstract":"","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"59-60"},"PeriodicalIF":3.3,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142786749","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}