M. Iocolano1, C. Vachani2, C. Bach2, K. Arnold-Korzeniowski2, J. M. Metz1, and C. E. Hill-Kayser1; 1Department of Radiation Oncology, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, 2Penn Medicine, Philadelphia, PA
Purpose/Objective(s): Proton radiation therapy (PRT) is commonly used in the treatment of GI malignancies. Many patients undergo trimodality therapy, placing them at risk for long-term morbidity. We assessed user-reported survivorship care data to further understand patterns of care and toxicities after PRT. Materials/
Methods: OncoLife is a publicly available, Internet-based tool provided by the OncoLink website (https://www.oncolink.org) and designed for cancer survivors. Users voluntarily enter information regarding demographics, treatment patterns, and toxicities. Questions are adaptive based on prior data input to generate personalized recommendations for survivorship care. OncoLife survivorship care plans (SCPs) were queried for users indicating PRT treatment for a primary GI malignancy. Results: From 6/2017-8/2023, 132 SCPs were created indicating PRT receipt for a primary GI cancer. The most common diagnosis was rectal cancer (31.1%), followed by esophageal (21.2%), anal (20.5%), pancreatic (9.8%) and colon (9.8%). Most users (70.5%) received trimodality therapy. The median age at diagnosis was 61 (range 21-88 yrs) and median current age at SCP creation was 63 (range 21-92 yrs). The average time from diagnosis to SCP creation was 2.4 years (SD=3). SCPs were most commonly created by a health care provider (73.5%), patients themselves (24%) or family member/friend (1.5%). Most users were male (51.5%), identified as white (58.3%) and were based in the US (92.4%). A significant portion previously received a SCP (70.5%). Over two-thirds of users were without recurrence (77.3%) at time of SCP creation. 132 patients reported 189 incidences of toxicity, including fatigue (17.4%) and changes to nails, skin, or hair (15.9%). The most commonly reported GI toxicity was change in bowel patterns (12%). Among those who received trimodality therapy (n=93), the most common toxicities were fatigue (20.4%), changes to nails, skin, or hair (17.2%), neuropathy (7.5%) and chronic diarrhea (7.5%). Conclusion: While nearly 20% of users previously treated with PRT for a GI malignancy report long-term treatment-related toxicity, the majority of those seeking personalized SCPs report having been offered survivorship care and are currently being managed by a health care provider. Our data suggests that users who seek information on survivorship care can access it, but further study in larger cohorts is needed.