(P 297) ESTABLISHING A PEDIATRIC, ADOLESCENT AND YOUNG ADULT COHORT OF SARCOMA PATIENTS TO STUDY ONCOLOGIC AND NON-ONCOLOGIC OUTCOMES

Objective: The Cohort to Augment the Understanding of Sarcoma Survivorship Across the Lifespan” (CAUSAL) study was established to examine outcomes of sarcoma survivors treated at Vanderbilt University Medical Center (VUMC) Sarcoma Treatment Center. We report on the sub- cohort of pediatric, adolescent and young adult (PED/AYA) patients in who we collect data regarding psychosocial and economic wellness of patients and their family unit.

Methods: CAUSAL is a retrospective-prospective cohort study to understand sarcoma survivorship through the lifespan. Participants aged 0-39 years form the PED/AYA sub-cohort. Pediatric participants are ages 0-17 years, while AYA participants are 18-39 years. Participant demographics and disease characteristics were abstracted from the electronic medical record. Participants completed a battery of patient reported outcome measures at enrollment. PROMIS Pediatric forms were administered to participants aged 8-17 years to assess physical and psychosocial health. For participants 18 years, PROMIS-57 forms evaluated similar measures. PROMIS results were interpreted as standardized T-scores, with a general population mean of 50 and standard deviation (SD) of 10. A parent/caregiver of participants aged 0-17 years was administered the GF6+ to assess family functioning. Financial toxicity was assessed among AYA participants via the Comprehensive Score for Financial Toxicity (COST) questionnaire.

Results: Among 1282 participants enrolled in CAUSAL to date, 351 (27.4%) are included in the PED/AYA sub-cohort, with a median age of 27.2 years (18.5-34.1). The sub-cohort includes 84 (23.9%) pediatric and 267 (76.1%) AYA participants, with median ages of 12.3 (8.2-14.9) and 31.0 (24.6-35.6) years, respectively. Among pediatric participants, 53 (63.1%) are male and 67 (79.8%) identify as white. Anatomic distribution of sarcomas includes trunk (N=21, 25.0%), extremity (N=41, 48.8%), head and neck (N=15, 17.9%), and retroperitoneal (N=5, 6.0%). Disease is localized in 61 (72.6%) cases. The GF6+ median score among 65 (77.4%) pediatric participants is 1.0 (1.0-1.5), indicating good family functioning. Among 61 participants aged 8-17 years, 40 (64.5%) completed the PROMIS Peds measures resulting in the following median T-scores: Anxiety 44.9 (33.5-57.5), Depression 47.4 (35.2-59.0), Fatigue 38.0 (31.1-49.1), Peer Relations 47.4 (38.5-64.4), and Pain 45.8 (34.0-55.2). Among AYA participants, 143 (53.6%) are female and 216 (80.9%) identify as white. Anatomic distribution of sarcomas includes trunk (N=70, 26.2%), extremity (N=159, 59.6%), head and neck (N=15, 5.6%), and retroperitoneal (N=22, 8.2%). Disease is localized in 219 (82.0%) cases. The PROMIS-57 Physical Function form was completed by 183 (68.5%) participants with a median score of 44.7 (38.6-53.0). Depression and Fatigue forms were both completed by 181 (67.8%) participants, with median scores of 50.9 (38.2-56.8) and 53.6 (46.9-62.3), respectively. The Pain Interference form was completed by 178 (66.7%) participants, with a median score of 54.1 (40.7-61.5). Among AYA participants, 194 (72.7%) completed the COST, demonstrating no financial toxicity (N=90, 46.4%), mild toxicity (N=63, 32.5%), moderate toxicity (N=40, 20.6%), or severe toxicity (N=1, 0.5%).

Conclusion: Preliminary data demonstrates that amongst pediatric patients, PROMIS Peds Anxiety, Depression, Peer Relations and Pain median T-scores are within 1 SD of the general population mean, while Fatigue was >1 SD below, indicating less exhaustion interfering with activities. Responses to GF6+ suggest good family functioning. Amongst AYA patients, the PROMIS-57 Physical Function, Depression, Fatigue, and Pain Interference median T-scores are within 1 SD of the general population mean. Most participants experienced some financial toxicity. With ongoing accrual, we will ascertain if these trends continue and improve our understanding of the impact of a sarcoma diagnosis on the psychosocial and financial wellness of patients and their families.