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dc.contributor.authorSchut, A-RW
dc.contributor.authorde Bruin, LE
dc.contributor.authorde Rooij, BH
dc.contributor.authorLidington, E
dc.contributor.authorTimbergen, MJM
dc.contributor.authorvan der Graaf, WTA
dc.contributor.authorvan Houdt, WJ
dc.contributor.authorBonenkamp, JJ
dc.contributor.authorJones, RL
dc.contributor.authorGrünhagen, DJ
dc.contributor.authorSleijfer, S
dc.contributor.authorGennatas, S
dc.contributor.authorVerhoef, C
dc.contributor.authorHusson, O
dc.coverage.spatialUnited States
dc.identifier.citationCancer Medicine, 2023, 12 (12), pp. 13661 - 13674
dc.description.abstractBACKGROUND: Desmoid-type fibromatosis (DTF) has a highly variable clinical course with varying intensity of symptoms. The objectives of this study were to identify subgroups of DTF patients based on physical symptom burden and to compare symptom burden subgroups on health-related quality of life (HRQoL) and healthcare use (univariate and multivariate). METHODS: Desmoid-type fibromatosis patients from the United Kingdom and the Netherlands received cross-sectional questionnaires on HRQoL (EORTC QLQ-C30), DTF-specific HRQoL (DTF-QoL) and healthcare utilisation. Latent class cluster analysis was performed to identify subgroups based on patients' symptom burden using EORTC QLQ-C30 and DTF-QoL physical symptom items. Multivariate linear and logistic regression analyses were conducted to examine associations of symptom burden with HRQoL and healthcare utilisation, respectively. RESULTS: Among 235 DTF patients, four symptom burden clusters were identified, with low symptom burden (24%), intermediate symptom burden-low pain (20%), intermediate symptom burden-high pain (25%) and high symptom burden (31%). DTF patients with high symptom burden had clinically relevant lower HRQoL scores compared to patients with low and intermediate symptom burden (p < 0.001) and reported more general and DTF-related visits to their general practitioner compared to the low symptom burden cluster (p < 0.01). In the multivariate analyses, symptom burden was independently associated with both HRQoL and healthcare utilisation. CONCLUSIONS: This study identified four distinct subgroups of DTF patients based on their level of symptom burden, with a considerable number of patients being highly symptomatic. Knowledge of the level of symptom burden DTF patients experience can help to identify patients at risk of poorer outcomes and tailor supportive care to the individual needs of DTF patients.
dc.format.extent13661 - 13674
dc.relation.ispartofCancer Medicine
dc.subjectdesmoid tumour
dc.subjecthealth-related quality of life
dc.subjecthealthcare utilisation
dc.subjectpatient-reported outcomes
dc.subjectrare diseases
dc.subjectQuality of Life
dc.subjectFibromatosis, Aggressive
dc.subjectCross-Sectional Studies
dc.subjectSurveys and Questionnaires
dc.subjectDelivery of Health Care
dc.titlePhysical symptom burden in patients with desmoid-type fibromatosis and its impact on health-related quality of life and healthcare use.
dc.typeJournal Article
rioxxterms.typeJournal Article/Review
pubs.organisational-group/ICR/Primary Group
pubs.organisational-group/ICR/Primary Group/ICR Divisions
pubs.organisational-group/ICR/Primary Group/ICR Divisions/Clinical Studies
pubs.organisational-group/ICR/Primary Group/ICR Divisions/Clinical Studies/Clinical and Translational Sarcoma
pubs.organisational-group/ICR/Primary Group/ICR Divisions/Clinical Studies/Sarcoma Clinical Trials (R Jones)
pubs.organisational-group/ICR/Primary Group/Royal Marsden Clinical Units
pubs.organisational-group/ICR/Primary Group/ICR Divisions/Clinical Studies/Sarcoma Clinical Trials (R Jones)/Sarcoma Clinical Trials (R Jones) (hon.)
icr.researchteamClin Trans Sarcoma
dc.contributor.icrauthorHusson, Olga
icr.provenanceDeposited by Mr Arek Surman on 2023-08-04. Deposit type is initial. No. of files: 1. Files: Cancer Medicine - 2023 - Schut.pdf

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