Long-term impact of sporadic desmoid fibromatosis on work life, reproductive health, and support needs: results from the PROSa-DES study

Background Desmoid tumors (DTs; aggressive fibromatosis) are rare soft tissue tumors that predominantly affect young adults and can cause long-term morbidity. Although physical burden has been described, less is known about long-term psychosocial and functional impact. This study provides patient-reported insights into the impact of DT on employment, family planning, and psychosocial well-being. Patients and methods We analyzed data from 109 patients with DT recruited through a tertiary cancer center and a national patient advocacy group. The cohort had a median disease history of 10 years, enabling long-term assessment. Data on employment, fertility planning, and supportive care needs were collected through structured questionnaires. Results Mean age at survey was 45.7 years [standard deviation (SD) 14.1], and mean age at diagnosis was 35.8 years (SD 14.5). Nearly half of the participants had an officially recognized disability status, and ∼10% had exited the workforce. Among those employed full-time at diagnosis ( n = 49), 51% changed their career path, mainly due to reduced physical (89.9%) or psychological resilience (56.2%). Financial losses were reported by 52.2%. Among participants with incomplete family planning ( n = 59), 79.7% expressed at least moderate desire for children, yet only 17% received counseling from reproductive medicine specialists. Unmet support needs were most frequent for fear of progression (31.5%) and uncertainty about the future (35.8%). Emotional support needs decreased with longer disease duration ( P = 0.050). Conclusions DT has substantial long-term effects on employment, family planning, and psychosocial well-being. Structured survivorship approaches—including return-to-work planning, fertility counseling, and sustained psychosocial support—may help address life-course challenges in this patient population.