(P 45) UTILIZATION OF MENTAL HEALTH AND SUPPORTIVE CARE RESOURCES AMONG PATIENTS WITH DESMOID TUMORS

Objective: Desmoid tumors (DTs) are locally aggressive tumors without metastatic potential, primarily affecting young adults during an active and productive portion of their lives. High levels of emotional distress, including anxiety and sleep disturbances, have been reported in patients with DTs, whether they are undergoing systemic therapy or are participating in expectant management alone. In addition, patients (pts) with DTs often struggle to understand their disease and its unpredictable course, leading to difficulty garnering the social support network often seen in patients with cancers. Despite knowledge of these psychosocial concerns, the utilization of mental health and supportive care resources among DT pts is not well-characterized.

Methods: An institutional database identified pts with DTs seen from 2005-2023 using a free-text search engine. Inclusion criteria included biopsy-proven DT and ≥ 1 year of follow-up at the institution. Eligible pts were evaluated for age at diagnosis, race, sex, tumor location and FAP (family adenomatous polyposis syndrome) status. Treatment conditions captured included local control modality and systemic therapy modality. Supportive care referral information included type of referral, reason for referral, follow-up, or reason for lack of follow-up.

Results: 110 eligible pts (74F/36M) were identified. Median age of diagnosis was 41 yrs (range 14-76). 85% of pts were Caucasian and 42% of pts had abdominal or mesenteric DTs. Complete demographic information in Table 1. 31% of pts underwent at least one resection while 19% had other local therapies. 76% of pts received at least one line of systemic therapy. The most used systemic therapy was sorafenib (36%), followed by sulindac (25%) and liposomal doxorubicin (15%). 49 total pts (45%) received at least one mental health or supportive care referral (social work, adolescent/young adult (AYA) program, music therapy, cancer rehabilitation, integrative medicine, reproductive endocrinology, smoking cessation program, nutrition, symptom management, and physical medicine and rehabilitation). Cancer rehabilitation was the most common referral (30%). Referrals made to supportive care specialties for physical symptoms occurred in 47% of DT pts (Figure 2). 4 pts (8%) did not pursue the referral. Female pts were more likely to receive a supportive care or mental health referral (OR 2.89, 95% CI 1.22-6.85). Referrals were more likely in pts who received any type of systemic therapy or carried a diagnosis of familial adenomatous polyposis (FAP) but not statistically significant (OR 2.14, 95% CI 0.80-5.47; OR 1.99, 95% CI 0.53-7.45). Pts with abdominal site DTs were less likely to receive referrals (OR 0.50, 95% CI 0.23-1.09), although not statistically significant. Referrals did not differ between adolescent and young adult patients (age ≤39) and older adults (OR 1.07, 95% CI 0.50-2.31).

Conclusion: In our single-center study, nearly half of pts with desmoid tumors were referred to mental health and supportive care services and this was more common in female patients. Many referrals were made to specialties that focus on physical symptoms, suggesting that such symptoms may be better recognized by clinicians as intervenable when compared to symptoms of emotional or psychological distress. The high rate of follow-up with referrals implies that pts with desmoid tumors are motivated to seek such services when offered. These results will inform the development of a pilot study to explore acceptability, feasibility, and appropriateness of a group-based virtual mental health series for patients with desmoid tumors.