The Evaluation of Health-Related Quality of Life Issues Experienced by Patients with Desmoid-Type Fibromatosis (The QUALIFIED Study)-A Protocol for an International Cohort Study.
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Embargo End Date
ICR Authors
Authors
Schut, A-RW
Timbergen, MJM
Lidington, E
Grünhagen, DJ
van der Graaf, WTA
Sleijfer, S
van Houdt, WJ
Bonenkamp, JJ
Younger, E
Dunlop, A
Jones, RL
Verhoef, C
Gennatas, S
Husson, O
Timbergen, MJM
Lidington, E
Grünhagen, DJ
van der Graaf, WTA
Sleijfer, S
van Houdt, WJ
Bonenkamp, JJ
Younger, E
Dunlop, A
Jones, RL
Verhoef, C
Gennatas, S
Husson, O
Document Type
Journal Article
Date
2021-06-22
Date Accepted
2021-06-18
Abstract
Sporadic desmoid-type fibromatosis (DTF) is a rare soft tissue tumour with an unpredictable clinical course. These tumours are incapable of metastasising, but their local aggressive tumour growth and tendency to recur locally can result in a substantial symptom burden. Measuring the impact of DTF on health-related quality of life (HRQoL) can be challenging due to the variable clinical presentation of the disease. Therefore, a HRQoL instrument assessing DTF-specific issues is needed. The QUALIFIED study aims to (1) pre-test a previously developed DTF-specific HRQoL tool (the DTF-QoL); (2) evaluate prevalence of HRQoL issues in adult DTF patients; and (3) identify subgroups at risk of impaired HRQoL. This study (NCT04289077) is an international, multicentre, cross-sectional, observational cohort study. Patients ≥ 18 years with sporadic DTF from the Netherlands and the United Kingdom will be invited to complete a set of questionnaires specifically composed for this patient group. Questionnaires will be completed using PROFILES (Patient Reported Outcomes Following Initial treatment and Long-term Evaluation of Survivorship). Analyses will include testing the psychometric properties of the DTF-QoL and evaluating the prevalence of HRQoL issues using the DTF-QoL, EORTC QOL-C30 and EQ-5D-5L, among other questionnaires. This study will provide insight into HRQoL issues experienced by patients with DTF. Awareness of these issues and the implementation of the DTF-QoL in research and clinical practice can help to improve overall HRQoL and to provide personalised care.
Citation
Cancers, 2021, 13 (13)
Source Title
Publisher
MDPI
ISSN
2072-6694
eISSN
2072-6694
Collections
Research Team
Clinical and Translational Sarcoma
Sarcoma Clinical Trials (R Jones)
Clinical and Translational Sarcoma
Sarcoma Clinical Trials (R Jones)
Sarcoma Clinical Trials (R Jones)
Clinical and Translational Sarcoma
Sarcoma Clinical Trials (R Jones)