Cancers, Vol. 13, Pages 3068: 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
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.
Source: Cancers - Category: Cancer & Oncology Authors: Anne-Rose W. Schut Milea J. M. Timbergen Emma Lidington Dirk J. Gr ünhagen Winette T. A. van der Graaf Stefan Sleijfer Winan J. van Houdt Johannes J. Bonenkamp Eugenie Younger Alison Dunlop Robin L. Jones Cornelis Verhoef Spyridon Gennatas Olga Husson Tags: Study Protocol Source Type: research