Quality of Life ResearchPub Date : 2025-02-01Epub Date: 2024-10-30DOI: 10.1007/s11136-024-03818-6
Wai Chee Kuan, Ka Keat Lim, Kok Han Chee, Sazzli Kasim, Juman Abdulelah Dujaili, Kenneth Kwing-Chin Lee, Siew Li Teoh
{"title":"Trajectory of health-related quality of life during and after hospitalisation due to worsening of heart failure.","authors":"Wai Chee Kuan, Ka Keat Lim, Kok Han Chee, Sazzli Kasim, Juman Abdulelah Dujaili, Kenneth Kwing-Chin Lee, Siew Li Teoh","doi":"10.1007/s11136-024-03818-6","DOIUrl":"10.1007/s11136-024-03818-6","url":null,"abstract":"<p><strong>Purpose: </strong>This study aimed to examine the trajectory in health-related quality of life (HRQoL) during and after hospitalisation for worsening of heart failure (HF) in Malaysia.</p><p><strong>Methods: </strong>200 patients with heart failure and reduced ejection fraction (HFrEF) admitted into two hospitals in Malaysia due to worsening of HF were surveyed using the EQ-5D-5 L questionnaire. The primary outcomes were utility values at admission, discharge and 1-month post-discharge (1MPD). Secondary outcomes included the visual analogue scores (VAS) and the proportion of patients reporting each EQ-5D-5 L dimension levels. Missing data were imputed using multiple imputation, and generalised linear mixed models were fitted.</p><p><strong>Results: </strong>At admission, the unadjusted mean utility values and VAS scores for HFrEF patients in Malaysia were as low as 0.150 ± 0.393 and 38.2 ± 20.8, respectively. After a median hospital stay of 4 days, there was a significant improvement in utility values and VAS scores by 0.510 (95% CI: 0.455-0.564) and 28.8 (95% CI: 25.5-32.1), respectively. The utility value and VAS score at 1-month post-discharge were not significantly different from discharge. The proportion of HFrEF patients reporting problems and severe problems in mobility, self-care, usual activities, and anxiety/depression, pain/discomfort reduced at varying degree from admission to discharge and 1MPD.</p><p><strong>Conclusion: </strong>HF is a progressive condition with substantial variation in HRQoL during the disease trajectory. During hospitalisation due to worsening of HF, HFrEF population has unfavourable HRQoL. Rapid and significant HRQoL improvement was observed at discharge, which sustained over one month. The study findings can inform future cost-effectiveness analyses and policies.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"471-484"},"PeriodicalIF":3.3,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11865137/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142547012","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}
Quality of Life ResearchPub Date : 2025-02-01Epub Date: 2024-11-06DOI: 10.1007/s11136-024-03819-5
Minji K Lee, Sandra A Mitchell, Ethan Basch, Gina L Mazza, Blake T Langlais, Gita Thanarajasingam, Brenda F Ginos, Lauren Rogak, Eric A Meek, Jennifer Jansen, Allison M Deal, Philip Carr, Victoria S Blinder, Mattias Jonsson, Gita N Mody, Tito R Mendoza, Antonia V Bennett, Deborah Schrag, Amylou C Dueck
{"title":"Identification of meaningful individual-level change thresholds for worsening on the patient-reported outcomes version of the common terminology criteria for adverse events (PRO-CTCAE®).","authors":"Minji K Lee, Sandra A Mitchell, Ethan Basch, Gina L Mazza, Blake T Langlais, Gita Thanarajasingam, Brenda F Ginos, Lauren Rogak, Eric A Meek, Jennifer Jansen, Allison M Deal, Philip Carr, Victoria S Blinder, Mattias Jonsson, Gita N Mody, Tito R Mendoza, Antonia V Bennett, Deborah Schrag, Amylou C Dueck","doi":"10.1007/s11136-024-03819-5","DOIUrl":"10.1007/s11136-024-03819-5","url":null,"abstract":"<p><strong>Background: </strong>We derived meaningful individual-level change thresholds for worsening in selected patient-reported outcomes version of the common terminology criteria for adverse events (PRO-CTCAE®) items and their composite scores.</p><p><strong>Methods: </strong>We used two data sources, the PRO-TECT trial (Alliance AFT-39) that collected PRO-CTCAE data from adults with advanced cancer at 26 United States (U.S.) community oncology practices and the PRO-CTCAE validation study that collected PRO-CTCAE data from adults undergoing chemotherapy or radiation therapy at nine U.S. cancer centers or community oncology practices. Both studies administered selected PRO-CTCAE items and EORTC QLQ-C30 scales. Conceptually, relevant QLQ-C30 domains were used as anchors to estimate meaningful change thresholds for deterioration in corresponding PRO-CTCAE items and their composite scores. Items or composites with ǀρǀ ≥ 0.30 correlation with QLQ-C30 scales were included. Changes in PRO-CTCAE scores and composites were estimated for patients who met or exceeded a 10-point deterioration on the corresponding QLQ-C30 scale. Change scores were computed between baseline and the 3-month timepoint in PRO-TECT, and in the PRO-CTCAE validation study between baseline and a single follow-up visit that occurred between 1 and 7 weeks later. For each PRO-CTCAE item, change scores could range from - 4 to 4; for a composite, change scores could range from - 3 to 3.</p><p><strong>Results: </strong>Change scores in QLQ-C30 and PRO-CTCAE were available in 406 and 792 patients in PRO-TECT and the validation study, respectively. Across QLQ-C30 scales, the proportion of patients with a 10-point or greater worsening on QLQ-C30 ranged from 15 to 30% in the PRO-TECT data and 13% to 34% in the validation data. Across PRO-CTCAE items, anchor-based meaningful change estimates for deterioration ranged from 0.05 to 0.30 (mean 0.19) in the PRO-TECT data and from 0.19 to 0.53 (mean 0.36) in the validation data. For composites, they ranged from 0.06 to 0.27 (mean 0.17) in the PRO-TECT data and 0.22 to 0.51 (mean 0.37) in the validation data.</p><p><strong>Conclusion: </strong>In both datasets, the minimal meaningful individual-level change threshold for worsening was one point for all items and composite scores.</p><p><strong>Clinicaltrials: </strong>gov: NCT03249090 (AFT-39), NCT02158637 (MC1091).</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"495-507"},"PeriodicalIF":3.3,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11865169/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142583949","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}
Quality of Life ResearchPub Date : 2025-02-01Epub Date: 2024-11-06DOI: 10.1007/s11136-024-03822-w
Mônica Viegas Andrade, Kenya Noronha, Gilvan Ramalho Guedes, Bernardo Campolina Diniz, Valéria Andrade Silva, Aline de Souza, Lucas Resende de Carvalho, Paulo Estevão Braga, André Soares Motta-Santos, Nayara Abreu Julião, Daniel Nogueira da Silva, Henrique Bracarense, Marcia C Castro
{"title":"Health-related quality of life due to malaria: a systematic review.","authors":"Mônica Viegas Andrade, Kenya Noronha, Gilvan Ramalho Guedes, Bernardo Campolina Diniz, Valéria Andrade Silva, Aline de Souza, Lucas Resende de Carvalho, Paulo Estevão Braga, André Soares Motta-Santos, Nayara Abreu Julião, Daniel Nogueira da Silva, Henrique Bracarense, Marcia C Castro","doi":"10.1007/s11136-024-03822-w","DOIUrl":"10.1007/s11136-024-03822-w","url":null,"abstract":"<p><strong>Purpose: </strong>This paper aims to conduct a systematic review (SR) to assess Health-Related Quality of Life (HRQoL) of malaria-exposed populations for different regions where malaria is endemic, considering any health measurements.</p><p><strong>Methods: </strong>An electronic search of the Medline, Lilacs, and Embase databases was conducted until February 2nd, 2024, to identify and select studies that evaluated HRQoL. No restrictions on place or language were made.</p><p><strong>Results: </strong>Thirty-seven studies were included, among them 21 focused on African countries. The most investigated HRQoL outcome associated with malaria was Disability-Adjusted Life Years (DALYs). These studies primarily aim to analyze the epidemiological burden of the disease or to conduct economic assessments. Only four studies conducted field research using specific instruments to assess the HRQoL of individuals experiencing malaria episodes. Three of them estimated EQ-5D utility index and found scores varying from 0.349 for severe malaria (Indonesia) to 0.74 (Nigeria). The health domains that are most affected by malaria are pain and discomfort and usual activities (EQ-5D instrument) and physical domains (WHOQOL-BREF). These results reflect the main malaria symptoms which are fever, headache, and generalized pain.</p><p><strong>Conclusion: </strong>This SR highlights a significant gap in understanding the quality of life among individuals experiencing malaria. Despite being an acute illness, recurrent episodes of malaria can lead to considerable loss in quality of life. Moreover, there are significant equity implications, as malaria remains endemic in socioeconomically disadvantaged populations.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"325-339"},"PeriodicalIF":3.3,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142583944","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}
Quality of Life ResearchPub Date : 2025-02-01Epub Date: 2024-11-22DOI: 10.1007/s11136-024-03838-2
Hanna Lovise Sargénius, Torstein Baade Rø, Ruth Elizabeth Hypher, Anne Elisabeth Brandt, Stein Andersson, Torun Gangaune Finnanger, Kari Risnes, Jan Stubberud
{"title":"Health-related quality of life in children and adolescents with paediatric acquired brain injury: Secondary data analysis from a randomised controlled trial.","authors":"Hanna Lovise Sargénius, Torstein Baade Rø, Ruth Elizabeth Hypher, Anne Elisabeth Brandt, Stein Andersson, Torun Gangaune Finnanger, Kari Risnes, Jan Stubberud","doi":"10.1007/s11136-024-03838-2","DOIUrl":"10.1007/s11136-024-03838-2","url":null,"abstract":"<p><strong>Purpose: </strong>To explore the characteristic quality of health profiles of children with paediatric acquired brain injury (pABI), and to investigate whether improvement in executive function (EF) following cognitive rehabilitation is associated with improvement in health-related quality of life (HRQOL).</p><p><strong>Method: </strong>A study of secondary endpoints in a blinded, parallel-randomised controlled trial with children (ages 10-17 years) with pABI and executive dysfunction. Data was obtained from 73 children-parent dyads. Explorative analyses were conducted comparing baseline with 8-week post-intervention, and 6-month follow-up data. Outcome measures included the EQ-5D-Y-3L health dimensions and the visual analogue scale (VAS).</p><p><strong>Results: </strong>At baseline and 6-month follow-up, mean (SD) VAS were 76.22 (17.98) and 79.49 (19.82) on the parent-report, and 77.19 (16.63) and 79.09 (17.91) on the self-report, respectively. Comparing children who improved EF to those who did not improve/worsened, no significant improvement was found for the VAS (parent-report) over time (BRIEF-BRI: F = 2.19, p = 0.12, BRIEF-MI: F = 2.23, p = 0.12) for either group. A significant main effect by group was found for BRIEF-MI (F = 4.02, p = 0.049), but no time*group interaction (F = 0.414, p = 0.662).</p><p><strong>Conclusion: </strong>The children and their parents reported only minor problems across EQ-5D-Y-3L dimensions and evaluated overall health as relatively good. Participants with a clinically significant change in the metacognitive aspect of EF had higher HRQOL. Cognitive interventions aiming to ameliorate deficits in EF in pABI may be beneficial to improve HRQOL.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"577-588"},"PeriodicalIF":3.3,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11865218/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142688592","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":"Health-related quality of life and its association with socioeconomic status and mental health in 5- to 7-year-old children: a cross-sectional study.","authors":"Eva-Grethe Befus, Eirin Mølland, Sølvi Helseth, Thomas Westergren, Eirik Abildsnes, Milada Hagen, Sandra Nolte, Kristin Haraldstad","doi":"10.1007/s11136-024-03834-6","DOIUrl":"10.1007/s11136-024-03834-6","url":null,"abstract":"<p><strong>Purpose: </strong>Assessing socioeconomic status (SES), mental health, and health-related quality of life (HRQoL) in young children is crucial for making informed health care decisions and identifying areas of intervention. The present study aimed to investigate potential associations between SES, mental health, and HRQoL in 5-7-year-old children.</p><p><strong>Method: </strong>The present study included mother-reported health assessments for 621 children aged 5-7 years in Grade 1 collected between 2019 and 2023 as part of the Starting Right™ project. Online questionnaires were used to support public health nurses in assessing children's health status. HRQoL (KIDSCREEN-27, 5 subscales) and mental health [Strength and Difficulties Questionnaire (SDQ), 4 subscales] were assessed. Sociodemographic characteristics, sex, maternal education, and income were obtained from Statistics Norway. The data were analyzed using multiple robust regression.</p><p><strong>Results: </strong>Mother-reported mean scores for the KIDSCREEN-27 were within the normal range compared with European norms (8-11 years). However, for each KIDSCREEN-27 dimension, there were individuals whose mothers reported scores that were substantially lower than average. Having mental health problems, defined as being in the 80th and 90th percentiles of the SDQ Total problem score, was associated with 2.1-10.7-point lower KIDSCREEN-27 scores (p < 0.001-0.021), which was most noticeable in the KIDSCREEN-27 school environment subscale. Weak but significant positive associations were found between SES and HRQoL.</p><p><strong>Conclusion: </strong>Our results provide important insights into the associations between SES, mental health, and HRQoL in young children. Given the strong association between mental health problems and HRQoL in Grade 1 children, the assessment of both is essential, so that early interventions, an improved caring environment, and nurturing support can be initiated.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"549-561"},"PeriodicalIF":3.3,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11865220/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142676701","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":"Psychometric properties of self-reported measures of psychological birth trauma in puerperae: A COSMIN systematic review.","authors":"Pingping Chen, Chao Zhang, Guangjian Liu, Hongxia Zuo, Menghe Wang, Xiaoyan Shi, Longti Li","doi":"10.1007/s11136-024-03811-z","DOIUrl":"10.1007/s11136-024-03811-z","url":null,"abstract":"<p><strong>Purpose: </strong>To identify and evaluate the psychometric properties of available patient-reported outcome measures (PROMs) of psychological birth trauma (PBT) in postpartum women.</p><p><strong>Methods: </strong>A literature search was carried out across eight databases-PubMed, Embase, Web of Science, CINAHL, PsycINFO, China National Knowledge Infrastructure (CNKI), Wanfang Database, and VIP Database for Chinese Technical Periodicals-covering studies published from the inception of each database up to 21 May 2024. English and Chinese language studies employing any research design and reporting at least one psychometric property of PBT in puerperae were included. Independent reviewers extracted data and followed the Consensus-based Standards for the selection of health Measurement Instruments (COSMIN) guidelines to evaluate three aspects of the included instruments: methodological quality, psychometric properties, and level of evidence assessed using the modified Grading of Recommendations Assessment, Development, and Evaluation (GRADE) framework.</p><p><strong>Results: </strong>Thirty-one studies with twelve PROMs were included, measurement error, cross-cultural validity, and responsiveness were not reported for most PROMs. Nine PROMs received a Class B recommendation, based on their measurement attribute ratings and overall evidence quality. In contrast, the CTI, IES-R, and PBTAS with high-quality evidence for insufficient measurement properties, so received a Class C recommendation.</p><p><strong>Conclusions: </strong>This systematic review provisionally recommends the City BiTS as credible tool for assessing PBT in both clinical practice and research involving puerperae. However, further comprehensive studies are needed to conduct more comprehensive validations of the psychometric properties of existing PROMs.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"289-304"},"PeriodicalIF":3.3,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11865166/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142547010","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}
Quality of Life ResearchPub Date : 2025-02-01Epub Date: 2024-11-05DOI: 10.1007/s11136-024-03824-8
Gudrun Rohde, Jens Lehmann, Micha J Pilz, Leslye Rojas-Concha, Bernhard Holzner, Madeleine T King, Richard Norman, Georg Kemmler
{"title":"Norwegian and Swedish value sets for the EORTC QLU-C10D utility instrument.","authors":"Gudrun Rohde, Jens Lehmann, Micha J Pilz, Leslye Rojas-Concha, Bernhard Holzner, Madeleine T King, Richard Norman, Georg Kemmler","doi":"10.1007/s11136-024-03824-8","DOIUrl":"10.1007/s11136-024-03824-8","url":null,"abstract":"<p><strong>Purpose: </strong>This study aimed to develop utility weights for the European Organization for Research and Treatment of Cancer (EORTC) QLU-C10D, a cancer-specific utility instrument, tailored to the Norwegian and Swedish populations. The utility weights are intended for use in the specific welfare contexts of Norway and Sweden to support more precise healthcare decision-making in cancer treatment and care.</p><p><strong>Methods: </strong>This cross-sectional study included 1019 Norwegian and 1048 Swedish participants representative in age and gender of the two general populations. Participants completed a discrete choice experiment involving 960 choice sets, each consisting of two EORTC QLU-C10D health states described by the instrument's domains and the duration of each state. Utility weights were calculated using generalized estimation equation models, and non-monotonic levels were merged to ensure consistent valuation.</p><p><strong>Results: </strong>In the Norwegian participants, the largest utility decrements were seen for the domain of physical functioning (decrement of - 0.263 for highest level \"very much\"), followed by pain (decrement - 0.205 for level \"very much\") and role functioning (- 0.139). Among the cancer-specific domains, nausea had the largest utility decrement (- 0.124). In the Swedish participants, the largest utility decrements were also observed for physical functioning (- 0.207 for the response \"very much\"), followed by pain (- 0.139), role functioning (- 0.133), and nausea (- 0.119). Emotional functioning also exhibited a sizable utility decrement (- 0.115).</p><p><strong>Conclusion: </strong>This study provides the first set of utility weights for the EORTC QLU-C10D specific to Norway and Sweden, reflecting the unique health preferences of these populations. The generated utility decrements can inform cost-utility analyses and optimize resource allocation in cancer care within the Norwegian and Swedish healthcare systems.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"429-443"},"PeriodicalIF":3.3,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11865156/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142583931","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}
Quality of Life ResearchPub Date : 2025-02-01Epub Date: 2024-11-13DOI: 10.1007/s11136-024-03829-3
Miguel Regueiro, Sylvia Su, Aisha Vadhariya, Xian Zhou, Frederick Durand, Larissa Stassek, Ariane K Kawata, Claudine Clucas, Vipul Jairath
{"title":"Psychometric evaluation of the Functional Assessment of chronic illness therapy-fatigue (FACIT-Fatigue) in adults with moderately to severely active Crohn's disease.","authors":"Miguel Regueiro, Sylvia Su, Aisha Vadhariya, Xian Zhou, Frederick Durand, Larissa Stassek, Ariane K Kawata, Claudine Clucas, Vipul Jairath","doi":"10.1007/s11136-024-03829-3","DOIUrl":"10.1007/s11136-024-03829-3","url":null,"abstract":"<p><strong>Purpose: </strong>To provide further evidence on the psychometric properties of the Functional Assessment of Chronic Illness Therapy-Fatigue (FACIT-Fatigue) in moderately to severely active Crohn's disease (CD), and to determine thresholds for meaningful improvement in fatigue.</p><p><strong>Methods: </strong>The FACIT-Fatigue is a 13-item patient-reported outcome measure (range, 0-52) assessing fatigue over the previous week. Using pooled data from the Phase 3 VIVID-1 study of moderately to severely active CD, psychometric properties of FACIT-Fatigue were evaluated up to Week 52. The Patient Global Rating of Severity (PGRS) and Patient Global Impression of Change (PGIC) were used as primary anchors to estimate the FACIT-Fatigue score change representing meaningful improvement.</p><p><strong>Results: </strong>Psychometric analyses included 1065 adults. The FACIT-Fatigue demonstrated good internal consistency, and correlations between individual items and the total score were moderate to strong. The FACIT-Fatigue score showed moderate to strong correlations with other patient-reported assessments and weak correlations with endoscopic/laboratory assessments. The FACIT-Fatigue differentiated between distinct groups of participants varying in disease severity, quality of life, and fatigue based on PGRS and other assessments. FACIT-Fatigue improvements during the study differed significantly between most PGRS change and PGIC categories. Anchor-based estimates suggested a 6-9-point increase in the FACIT-Fatigue total score as meaningful improvement.</p><p><strong>Conclusions: </strong>The FACIT-Fatigue demonstrated strong psychometric properties in the VIVID-1 population of adults with moderately to severely active CD and determined a FACIT-Fatigue score change threshold representing meaningful improvement.</p><p><strong>Trial registration: </strong>NCT03926130. Registered 23 April 2019, https://clinicaltrials.gov/study/NCT03926130 .</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"509-521"},"PeriodicalIF":3.3,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11865103/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142626761","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}
Quality of Life ResearchPub Date : 2025-02-01Epub Date: 2024-11-20DOI: 10.1007/s11136-024-03832-8
Ludvig Daae Bjørndal, Ragnhild Bang Nes, Ziada Ayorech, Olav Vassend, Espen Røysamb
{"title":"Multiple social factors are associated with wellbeing when accounting for shared genetic and environmental confounding.","authors":"Ludvig Daae Bjørndal, Ragnhild Bang Nes, Ziada Ayorech, Olav Vassend, Espen Røysamb","doi":"10.1007/s11136-024-03832-8","DOIUrl":"10.1007/s11136-024-03832-8","url":null,"abstract":"<p><strong>Purpose: </strong>Social factors are associated with mental health and wellbeing. However, few studies have examined genetic and environmental influences on social factors themselves, limiting current understanding of influences on aspects of the social environment. Most studies which have identified links between social factors and mental health are also limited by the possible influence of unmeasured genetic and environmental confounding. In this study, we investigated the genetic and environmental underpinnings of multiple social factors (relationship satisfaction, loneliness, attachment, trust, relationship disruptions), and their associations with life satisfaction measured concurrently and six years later, after accounting for shared genetic and environmental confounding.</p><p><strong>Methods: </strong>Data from a population-based sample of adult twins (N = 1987) and two measurement timepoints were used for the primary analyses. We used multivariate Cholesky models to estimate genetic and environmental influences across five social factors. Subsequently, we conducted co-twin control analyses to examine associations between social factors and wellbeing after controlling for shared genetic and environmental confounding.</p><p><strong>Results: </strong>Heritability estimates for the social factors ranged from 24 to 42%. Genetic correlations across social factors were substantial, indicative of considerable genetic overlap. Associations between wellbeing and relationship satisfaction, loneliness, anxious and avoidant attachment, trust, and disruptions in relationships in the past year were attenuated in co-twin control analyses but remained statistically significant. Relationship satisfaction, loneliness, and attachment avoidance were also associated with wellbeing measured six years later in estimates which controlled for shared genetic and environmental confounding.</p><p><strong>Conclusion: </strong>Our findings provide evidence that multiple social factors are associated with wellbeing after accounting for potential confounding by shared genetic and/or environmental factors. These findings highlight the importance of multiple aspects of the social environment for wellbeing in older adulthood. Future studies should examine the directionality in associations between social factors and mental health and assess these relationships beyond older adulthood.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"535-545"},"PeriodicalIF":3.3,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11865172/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142676737","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}
Quality of Life ResearchPub Date : 2025-02-01Epub Date: 2024-12-09DOI: 10.1007/s11136-024-03820-y
T G W van der Heijden, K M de Ligt, N J Hubel, S van der Mierden, B Holzner, L V van de Poll-Franse, B H de Rooij
{"title":"Exploring the role of health-related quality of life measures in predictive modelling for oncology: a systematic review.","authors":"T G W van der Heijden, K M de Ligt, N J Hubel, S van der Mierden, B Holzner, L V van de Poll-Franse, B H de Rooij","doi":"10.1007/s11136-024-03820-y","DOIUrl":"10.1007/s11136-024-03820-y","url":null,"abstract":"<p><p>Health related quality of life (HRQoL) is increasingly assessed in oncology research and routine care, which has led to the inclusion of HRQoL in prediction models. This review aims to describe the current state of oncological prediction models incorporating HRQoL. A systematic literature search for the inclusion of HRQoL in prediction models in oncology was conducted. Selection criteria were a longitudinal study design and inclusion of HRQoL data in prediction models as predictor, outcome, or both. Risk of bias was assessed using the PROBAST tool and quality of reporting was scored with an adapted TRIPOD reporting guideline. From 4747 abstracts, 98 records were included in this review. High risk of bias was found in 71% of the publications. HRQoL was mainly incorporated as predictor (78% (55% predictor only, 23% both predictor and outcome)), with physical functioning and symptom domains selected most frequently as predictor. Few models (23%) predicted HRQoL domains by other or baseline HRQoL domains. HRQoL was used as outcome in 21% of the publications, with a focus on predicting symptoms. There were no difference between AI-based (16%) and classical methods (84%) in model type selection or model performance when using HRQoL data. This review highlights the role of HRQoL as a tool in predicting disease outcomes. Prediction of and with HRQoL is still in its infancy as most of the models are not fully developed. Current models focus mostly on the physical aspects of HRQoL to predict clinical outcomes, and few utilize AI-based methods.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"305-323"},"PeriodicalIF":3.3,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11865133/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142802022","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}