Surviving is just the beginning: Exposing unmet needs of cancer survivors through a patient-informed lens.

Abstract

214 Background: Despite advancements in survivorship care over the past two decades, cancer survivors continue to grapple with unmet needs that impact their quality of life. While survivorship care plans and clinical interventions have made progress in addressing physical health concerns, a substantial gap remains in delivering comprehensive biopsychosocial support. For the growing population of cancer survivors, varied degrees of toxicity and trauma persist. Research shows only 40% of survivors feel their healthcare providers adequately support their transition to post-treatment care (1). Methods: We conducted a qualitative study among survivors of varying Dx, grouped into 3 cohorts, with a two-pronged approach: semi-structured focus groups using “Experience Group” methodology identified domains of care gaps; followed by in-person, human-design workshops mapping perceived gaps in care based on lived experiences. We held 4 Experience Groups; posing open-ended questions (i.e., “what was a good day like w/ cancer?”) to 21 participants. A trained facilitator guided discussion based on emerging patterns in conversation. We utilized an inductive approach: data gathered from groups was used to define & develop codes to categorize responses from in-person workshops into domains & subdomains for care gaps. We held 3, 3-hour workshops in 9 months. Survivors were asked to explore “challenges or unmet needs in extended and long term survivorship.” We collected 628 qualitative data points from 24 total participants. Results: Participants identified 66 discreet unmet needs across 7 predominant domains: psychological/emotional, physical health and safety, social/relational, practical, education/information, financial, and existential/spiritual. Most common themes among cohorts included: 1) Mental health concerns: managing anxiety, depression, and existential dread. 2) Physical health: managing long-term effects, daily functioning, and quality of life. 3) Social health: building and maintaining support networks, caregiver support and healthy relationships. Second most common themes included: practical day-to-day concerns, financial and sexual health.Notably, young adult survivors expressed heightened financial and existential concerns. Conclusions: While these data exemplify common themes in current literature, they also point to the deep gap between clinical survivorship care plans and real-life support. These findings, while specific to Central Texas, hold implications for survivorship care nationally: increasing awareness and timely use of interdisciplinary interventions delivered outside the clinical setting are needed to comprehensively address the diverse needs of survivors. 1. NCCS, 2022.