Engagement and experience with cancer-related follow-up care among young adult survivors of childhood cancer after transfer to adult care.

Abstract

Young adult survivors (YAS) of childhood cancer require annual adult-focused, cancer-related follow-up given their risk for late effects of treatment. This study describes perception of and engagement with adult-focused, cancer-related follow-up care and general health care among YAS formally transferred to adult care from pediatric survivorship care. YAS transferred from pediatric survivorship care in the prior 1-5 years completed measures indicating engagement with cancer-related follow-up care, other health care utilization, content of communication by providers, quality of cancer-related care, and satisfaction with health care in the prior year. Eighty YAS (M age = 27.7 years, M time since diagnosis = 10.4 years) participated. Just over half of YAS surveyed (n = 44, 55%) endorsed continuing cancer-related follow-up care since transfer. Those with cancer-related follow-up endorsed seeing subspecialty survivorship providers (n = 16, 44%) and primary care providers (n = 22, 50%) or utilizing a shared care model (n = 6, 14%). About a third of YAS endorsed seeing subspecialists (n = 29, 36%) or using other support services (n = 22, 27%). YAS-perceived content of communication varied significantly depending on care model with less cancer-related content being discussed by primary care providers, though perceived quality of cancer-related care and satisfaction with health care was generally favorable. YAS report less than optimal engagement in cancer-related follow-up care and communication in their health care encounters. Young adult survivors should receive anticipatory guidance about expectations for delivery and content of adult-focused cancer-related follow-up care.