A Randomized Controlled Trial using a Heuristic Tool To Improve Symptom Self-Management in Adolescents and Young Adults with Cancer

Approximately 90,000 adolescents and young adults (AYAs) are diagnosed with cancer yearly in the United States. AYAs with cancer experience multiple co-occurring and related symptoms from their disease and treatment that adversely affect their day-to-day lives and are difficult to self-manage. Because undermanaged symptoms reduce quality of life and increase symptom severity and distress, effective person-centered symptom self-management (SS-M) is imperative for AYAs with cancer. A major barrier, however, is a lack of effective symptom self-management interventions that are tailored to this population. The proposed study addresses this gap by testing an intervention designed to improve SS-M behaviors in AYAs with cancer who are in active treatment. The Computerized Symptom Capture Tool (C-SCAT) is an intervention that uses a heuristics approach to promote AYAs’ self-awareness and insight about themselves and their symptoms and help them visualize the ‘big picture’ of their unique symptom experience. This use of heuristics contrasts with typical checklist approaches to symptom assessment which do not incorporate the patient’s perspective to identify symptoms of high priority, defined as the symptoms that are most important to them, and interrelationships among symptoms. The C-SCAT also facilitates AYAs in discussing the symptom issues that are of greatest importance to them with a clinician and jointly developing an effective plan for SS-M. This study is a two-group multi-site randomized controlled trial in which 126 AYAs with cancer in active treatment will be randomly assigned to the C-SCAT intervention group or usual care control group. The specific aims are to: 1) Determine the effects of the C-SCAT versus usual care on the primary outcomes of self-efficacy for symptom management and symptom self-management behaviors immediately post intervention (Time 1) and at followup one month later (Time 2); 2) Examine the effects of the C-SCAT versus usual care on secondary outcomes (symptom severity, symptom distress, social function, and satisfaction with social function) immediately post intervention (Time 1) and at follow-up one month later (Time 2); and 3) Explore the relationships of individual factors and social determinants of health with self-efficacy for symptom management and symptom selfmanagement behaviors at baseline (Time 0).The long-term goal of this research is to mitigate the symptoms that AYAs experience during cancer treatment by supporting symptom self-management. If shown to be effective, the C-SCAT could be incorporated into clinical settings and possibly into the electronic health record as an efficient, low-cost approach to improve symptom self-management.