Quality of Life Research最新文献

{"title":"Impact of sleep quality on health-related quality of life domains and the mediating effects of symptoms in people with multiple sclerosis.","authors":"Baye Dagnew, Cynthia A Honan, Laura L Laslett, Bruce V Taylor, Julie Campbell, Leigh Blizzard, Ingrid van der Mei","doi":"10.1007/s11136-024-03836-4","DOIUrl":"https://doi.org/10.1007/s11136-024-03836-4","url":null,"abstract":"<p><strong>Purpose: </strong>Many people living with multiple sclerosis (PwMS) experience poor sleep, which is associated with diminished overall health-related quality of life (HRQoL). We quantified associations between sleep quality and HRQoL domains and examined the extent to which other MS symptoms could account for these associations.</p><p><strong>Methods: </strong>In this cross-sectional survey of 1,717 Australians with MS, we used Assessment of Quality of Life (AQoL) 8D and Pittsburgh Sleep Quality Index (PSQI) to assess HRQoL and sleep quality, respectively. Total, direct, and indirect effects of sleep quality on HRQoL domains were determined using mediation regression analysis.</p><p><strong>Results: </strong>Poor sleep quality was significantly associated with all domains of HRQoL, with strongest associations seen for mental health (β=-0.08) and pain (β=-0.11), and weaker associations for independent living (β=-0.05) and senses (β=-0.03). Poor sleep quality had the largest direct effect on mental health (60.8%), happiness (48.7%), and pain (49.7%). MS symptom clusters mostly contributing to indirect effects were \"feelings of anxiety and depression\" for psychosocial, and \"pain and sensory symptoms\" for physical HRQoL super dimensions.</p><p><strong>Conclusion: </strong>Improving sleep could lead to substantial improvements in all HRQoL domains and the improvement in HRQoL could be partially achieved through indirect improvements in sleep on MS symptoms.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2024-11-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142626758","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Psychometric 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":"https://doi.org/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":""},"PeriodicalIF":3.3,"publicationDate":"2024-11-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","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":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Comparison of the early childhood oral health impact scale (ECOHIS-4D) and EuroQol-5D-Y for measuring oral health-related quality of life utility in children.","authors":"Gayani Shashikala Amarasinghe, Sanjeewa Kularatna, Sucharitha R Weerasuriya, Peter Arrow, Lisa Jamieson, Utsana Tonmukayakul, Sameera Senanayake","doi":"10.1007/s11136-024-03816-8","DOIUrl":"https://doi.org/10.1007/s11136-024-03816-8","url":null,"abstract":"<p><strong>Purpose: </strong>The psychometric properties of the Early Childhood Oral Health Impact Scale (ECOHIS-4D), an oral health-related quality-of-life tool for children, and EuroQol 5D-Young (EQ-5D-Y), a commonly used generic quality-of-life tool for children, were compared across a clinical severity index to determine which tool is better for measuring oral health-related quality of life in children.</p><p><strong>Methods: </strong>Delayed and filled surfaces score (dfs) was calculated for under six-year-old children at the recruitment and one year later. ECOHIS-4D and EQ-5D were filled out on both occasions. The following properties were examined: (i) Content validity by comparing mean utility values using the Wilcoxson Signed Rank Test and Bland Altman Test, (ii) Construct validity (ability to discriminate between groups of different clinical severity) by examining effect size between severity groups (iii) Responsiveness (for changes in health status) using floor and ceiling effect, standard response mean and linear regression (iv) Correlation between the utilities and dfs.</p><p><strong>Results: </strong>Respectively, 287 and 189 children were examined at the baseline and follow-up. Mean utility estimates from the tools were significantly different. All items of EQ-5D-Y showed high ceiling effects compared to items of ECOHIS-4D. Only the utility scores of ECOHIS-4D showed a significant association with the dfs score (β=-0.003, 95%CI=-0.004 to -0.002) in the linear regression models. Utility values form ECOHIS-4D, but not EQ-5D-Y correlated with the dfs (spearman's r=-0.33, 95%CI -0.43 to -0.23).</p><p><strong>Conclusion: </strong>ECOHIS-4D performs better than EQ-5D-Y in assessing young children's oral health-related quality of life.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2024-11-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142626752","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":"https://doi.org/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":""},"PeriodicalIF":3.3,"publicationDate":"2024-11-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","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":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Agreement of PROMIS Preference (PROPr) scores generated from the PROMIS-29 + 2 and the PROMIS-16.","authors":"Janel Hanmer, Chengbo Zeng, Amy M Cizik, Jason H Raad, Joel Tsevat, Anthony Rodriguez, Ron D Hays, Maria Orlando Edelen","doi":"10.1007/s11136-024-03827-5","DOIUrl":"https://doi.org/10.1007/s11136-024-03827-5","url":null,"abstract":"<p><strong>Purpose: </strong>Preference-based summary scores are used to quantify values, differences, and changes in health-related quality of life (HRQoL) that can be used for cost-effectiveness analyses. The PROMIS-Preference (PROPr) measure is a preference-based summary score comprised of 7 PROMIS domains. The PROMIS-16 is a new PROMIS profile instrument. We evaluated the measurement properties of PROPr generated from the widely used PROMIS-29 + 2 compared with the PROMIS-16.</p><p><strong>Methods: </strong>We performed a secondary analysis of data from an online survey of the general US population, with a longitudinal subsample who reported back pain. The survey included both the PROMIS-16 and the PROMIS-29 + 2 profiles. PROPr scores were calculated from each profile and compared by the distribution of scores, overall mean scores, product-moment correlations with pain measure scores (Oswestry Disability Index, Roland-Morris Disability Questionnaire, Pain Intensity, Interference with Enjoyment of Life, Interference with General Activity Scale, and Graded Chronic Pain Scale), and difference in mean scores in subgroups with 13 chronic health conditions (Cohen's d).</p><p><strong>Results: </strong>Of the 4,115 participants in the baseline survey, 1,533 with any reported back pain were invited for the 6-month follow-up survey and 1,256 completed it. At baseline, the overall mean (SD) PROPr score was 0.532 (0.240) from PROMIS-16 and 0.535 (0.250) from PROMIS 29 + 2. At both time points, the correlations of PROPr scores with physical and mental health summary scores from the PROMIS-29 and 4 pain scales were within 0.01 between profiles. Using subgroups with chronic health conditions and comparing between profiles, Cohen's d estimates of the difference in effect size were small (< 0.2).</p><p><strong>Conclusion: </strong>PROPr scores from the 16-item PROMIS profile measure are similar to PROPr scores from the longer PROMIS-29 + 2.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2024-11-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142605998","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":"Symptom prevalence in patients with advanced heart failure and its association with quality of life and activities of daily living.","authors":"Moritz Blum, Karen McKendrick, Laura P Gelfman, Nathan E Goldstein","doi":"10.1007/s11136-024-03823-9","DOIUrl":"https://doi.org/10.1007/s11136-024-03823-9","url":null,"abstract":"<p><strong>Background: </strong>Quality of life (QOL) and functional status are two key outcomes for patients with advanced heart failure (HF). We examined the association of eleven symptoms with QOL and functional status impairment in patients with advanced HF.</p><p><strong>Methods and results: </strong>This was a retrospective analysis of baseline data from a multi-center, cluster-randomized controlled trial (NCT01459744) which enrolled patients with an implanted cardioverter-defibrillator and advanced HF at high-risk for mortality. Study instruments included the Condensed Memorial Symptom Assessment Scale, the Kansas City Cardiomyopathy Questionnaire QOL subscale, and the number of activities of daily living (ADL) patients had difficulties with. The study included 413 subjects. In generalized linear models which were adjusted for baseline characteristics, the total number of symptoms was significantly associated with worse QOL, as was the presence of each individual symptom, except constipation. Lack of energy demonstrated the strongest negative association with QOL. Similarly, the total number of symptoms was associated with a higher number of ADL difficulties (i.e., worse functional status). The presence of pain, lack of energy and drowsiness was individually associated with more ADL difficulties.</p><p><strong>Conclusion: </strong>Among patients with advanced HF, a higher number of symptoms and specific individual symptoms were associated with worse QOL and functional status.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2024-11-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142583987","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":"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":"https://doi.org/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":""},"PeriodicalIF":3.3,"publicationDate":"2024-11-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","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":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"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":"https://doi.org/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":""},"PeriodicalIF":3.3,"publicationDate":"2024-11-06","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}

{"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":"https://doi.org/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":""},"PeriodicalIF":3.3,"publicationDate":"2024-11-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","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":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"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":"https://doi.org/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":""},"PeriodicalIF":3.3,"publicationDate":"2024-11-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","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":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}