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

Introduction: Desmoid Tumors (aggressive Fibromatosis; DT) are rare soft tissue tumors that typically affect young adults, predominantly women and can lead to significant long-term morbidity. While its physical burden is well characterized, less is known about its long-term psychosocial and functional impact. This study aims to explore how DT affects employment, career development, family planning, and support needs from a patient-centered perspective. Methods: We analyzed data from 109 participants suffering from DT who were recruited via a tertiary cancer center and a national patient advocacy group. The cohort has a median disease history of ten years, enabling long-term perspectives. Quantitative data on employment, fertility planning, and unmet needs were collected via structured questionnaires. Qualitative input from patient commentaries complemented these findings. Results: The mean age at survey was 45.7 years (SD 14.1); mean age at diagnosis was 35.8 years (SD 14.5). Nearly half of participants had an officially recognized disability status, and around 10% had exited the workforce, a substantially higher rate than in the general population. Among those employed full-time at diagnosis (n = 49), 51.0% changed their career path, most commonly due to physical (89.9%, n = 44) and psychological limitations (56.2%, n = 27). Financial losses due to changes in career plans were reported by 52.2% (n = 24). Of participants with incomplete family planning (n = 59), 79.7% expressed at least moderate desire for children, yet only 17.0% (n = 10) received counseling from reproductive medicine specialists. Satisfaction with counseling, when received, was high. Unmet support needs were most frequent for fear of progression (31.5%, n = 34) and uncertainty about the future (35.8%, n = 39). Emotional support needs declined over time (p = 0.050), suggesting some long-term adjustment. Conclusion: This study provides long-term, patient-reported insights into the impact of DT on employment, family planning, and psychosocial well-being. The findings highlight persistent functional and socioeconomic consequences, alongside enduring emotional burdens such as fear of progression. These results underscore the importance of structured survivorship approaches that integrate return-to-work planning, fertility counseling, and sustained psychosocial support, extending care beyond tumor control to long-term quality of life.