The Desmoid Tumor Research Foundation

January 2023

Health-related Quality of Life of Patients with Non-intra-abdominal Desmoid-type Fibromatosis during Active Surveillance: Results of a Prospective Observational Study

Author Information

Schut ARW (1, 2), Timbergen MJM (1, 2), Nasserinejad K (3), van Dalen T (1, 4), van Houdt WJ (5), Bonenkamp JJ (6), Sleijfer S (2), Grünhagen DJ (1), Verhoef C (1), Husson O (1, 7); Dutch Grafiti Group

(1) Department of Surgical Oncology, Erasmus MC Cancer Institute, University Medical Center Rotterdam, The Netherlands. (2) Department of Medical Oncology, Erasmus MC Cancer Institute, University Medical Center Rotterdam, The Netherlands. (3) Department of Hematology, Erasmus MC Cancer Institute, Rotterdam, The Netherlands. (4) Department of Surgical Oncology, University Medical Center Utrecht, the Netherlands; Department of Surgical Oncology, Diakonessenhuis Utrecht, The Netherlands. (5) Department of Surgical Oncology, Netherlands Cancer Institute, Amsterdam, The Netherlands. (6) Department of Surgical Oncology, Radboud University Medical Center, Nijmegen, The Netherlands. (7) Department of Medical Oncology, Netherlands Cancer Institute, Amsterdam, The Netherlands.

Publication

Ann Surg

Summary

Objective: To examine the impact of an active surveillance (AS) approach on health-related quality of life (HRQoL) of patients with desmoid-type fibromatosis (DTF). Summary background data: AS is recommended as initial approach in DTF patients. AS might however negatively affect HRQoL due to physical symptoms or stress and anxiety. Methods: In a prospective observational study, the GRAFITI trial (NTR4714), DTF patients were followed during an initial AS approach for three years. HRQoL was assessed by the EORTC QLQ-C30 at baseline, 6, 12 and 24-month follow-up. Patients who completed questionnaires at≥1 time point were included in this analysis of the secondary endpoint. A multivariable linear mixed-effects model with random intercept was conducted to assess trends of HRQoL scores over time and to explore the effect of treatment strategy on HRQoL. Results: All 105 patients enrolled in the GRAFITI trial were eligible for the HRQoL analyses. During 24-month follow-up, 75 patients (71%) continued AS and 30 patients (29%) started an active treatment (AT). DTF patients who continued AS demonstrated relatively stable HRQoL scores during follow-up. HRQoL scores of patients who started AT worsened compared to patients who continued AS, although no significant changes in HRQoL score over time were found in the mixed-model analyses. Overall, DTF patients who started AT scored significantly worse on pain (β=10.08, P=0.039) compared to patients who continued AS. Conclusions: An initial AS approach did not impair HRQoL of DTF patients who continued AS over time, therefore providing further support for AS as the frontline approach in DTF patients. Longitudinal assessment of HRQoL should be part of clinical follow-up to identify patients who may need a change in treatment strategy.

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