30 Background: Similar to survivors of childhood cancer, young adult (YA) survivors have distinct and complex medical and psychosocial needs. However, there are no specific follow-up guidelines for patients who were diagnosed as a young adult. Most YA survivors receive inadequate survivorship care with minimal surveillance for late effects. This study aims to examine the concept of survivorship care planning and determine what aspects of post-therapy care is most needed. Methods: Two focus groups were held to investigate the post treatment experience of YA survivors. Participants completed cancer treatment and were diagnosed between 2005 and 2011. They either continued to receive follow-up care or did not. These were further subdivided based on age at diagnosis: 18-24; 25-30; 31-39 years. Participants answered predetermined questions during their session. A demographic questionnaire was given and a SCP (a treatment summary [TS] and its associated long- and late-term risks) developed based on their electronic medical records. Results: 27 YAs participated in the focus groups. SCPs were developed for each participant and required 45 - 180 minutes to complete. 78% felt TS were accurate and 44% learned of long/late-term side effects they were previously not aware of nor receiving surveillance on. Barriers to continued follow-up were related to health insurance status, poor communication with their oncologist, and on-going adjustment challenges. Initial feedback from the SCPs indicates that YAs seek additional information on long/late-term side effects, roadmap for follow-up visit, and information on psychosocial support and YA specific resources. Conclusions: For young adults diagnosed with cancer, there are no guidelines on follow-up care. Young adult survivors are not aware of long- and late-term side effects they may have, and many do not know how often they need to have continued follow-up. Despite great strides made in survivors of childhood cancer, the same cannot be said for young adult survivors.
Supporting long-term follow-up of young adult survivors of childhood cancer: Correlates of healthcare self-efficacy