Symptom Management and Transitioning to Engagement with Post-treatment Care for Adolescent and Young Adult Cancer Survivors (AYA STEPS)

There are more than 600,000 adolescent and young adult (AYA; age 15-39 at diagnosis) cancer survivors in the U.S. The number of AYA survivors continues to grow due to both an increased cancer incidence and treatment advances (i.e., five-year survival rates > 80%). For AYA survivors, the impacts of treatment are significant and

long-lasting, including difficult physical symptoms (e.g., pain, fatigue), emotional distress (e.g., anxiety, depression), and an increased risk of long-term health problems (e.g., second cancers, early-onset cardiovascular disease). Persistent physical symptoms and emotional distress contribute to significant social,

economic, and health burden, disrupting AYA survivors’ abilities to complete their education, achieve autonomy, build a career, establish peer and romantic relationships, and build a family. AYA survivors report symptom management to be a critical, unmet healthcare need; yet, there is a paucity of interventions to address their

unique needs. Following completion of cancer therapy, many AYA survivors are gradually lost to follow-up with their oncology team while concurrently failing to establish care with health care providers who are aware of their risks and health care needs. Barriers to follow-up care for AYAs are multifaceted, and may include survivors’

beliefs about transitioning care to and navigating health care models centered around older adults due in part to age-specific competing demands (e.g., childcare, work, school) and the financial costs associated with care (e.g., being uninsured or underinsured). As a consequence, AYAs experience inadequate surveillance for late effects

and missed opportunities for symptom management and psychological support, which further perpetuates their unmet needs. We have developed an accessible digital health intervention, AYA STEPS (Symptom Management and Transitioning to Engagement with Post-Treatment Care for AYA Survivors), designed to enhance AYA

survivors’ abilities to manage their high symptom burden and engage in follow-up health care. Informed by the ORBIT Model of intervention development, AYA STEPS has been systematically and rigorously developed and refined through the PI’s prior work (K08CA245107). AYA STEPS is organized into six remotely delivered

sessions providing cognitive-behavioral and patient activation theory-based skills expected to lead to lower symptom burden and increased health care engagement by improving AYAs’ self-efficacy for symptom management and activation. We propose a randomized controlled trial to examine the efficacy of AYA STEPS

compared to AYA educational information for improving symptom burden and health care engagement for AYA survivors (N=260) who received cancer care in diverse health care settings (i.e., rural, urban, medically underserved areas) across North Carolina. Self-efficacy and patient activation will be examined as mediators of

intervention effects. The planned study has the potential to produce clinically impactful health benefits for an underserved and understudied group of cancer survivors who have significant symptom burden, experience barriers to care engagement, and have limited access to AYA-specific behavioral interventions.