Pain in desmoid-type fibromatosis: prevalence, determinants, and prognosis value.

To evaluate the prevalence, determinants, and prognostic value of pain at diagnosis in patients with desmoid-type fibromatosis (DF). We selected patients from the ALTITUDES cohort (NCT02867033), managed by surgery, active surveillance, or systemic treatments, with pain assessment at diagnosis. Patients were invited to fill QLQ-C30 questionnaire and HADS scale. Determinants were identified using logistic models. Prognostic value on event-free survival (EFS) was evaluated using the Cox Model. Overall, 382 patients were included in the current study (median age: 40.2 years; 117 men). The prevalence of pain was 36%, without significant difference according to first line treatment (p=0.18). In the multivariate analysis, pain was significantly associated with tumor size > 50 mm (p=0.013) and tumor site (p<0.001); pain was more frequent in the neck and shoulder locations (Odd Ratio: 3.05 [1.27-7.29]). Pain at baseline was significantly associated with poor quality of life (p<0.001), depression (p=0.02), lower performance status (p=0.03), and functional impairment (p=0.001); we also observed a non-significant association with anxiety (p=0.10). In the univariate analysis, baseline pain was associated with poor EFS; the 3-year EFS was 54% in patients with pain compared to 72% in those without pain. After adjustment for sex, age, size, and line of treatment, pain was still associated with poor EFS (hazard ratio: 1.82 [1.23-2.68], p=0.003). One third of recently diagnosed patients with DF experienced pain, especially those with larger tumors and neck/shoulder locations. Pain was associated with unfavorable EFS after adjustment for the confounders. This article is protected by copyright. All rights reserved.