We Are Done! Now What? Exploring End of Treatment Needs of Childhood Cancer Survivors and Their Parents

Abstract

Background: Increased childhood cancer survival rates have spurred a new body of research pertaining to the cancer-survivorship continuum. Literature suggests a lack of research and guidelines for care at the end of treatment (EOT). To improve the transition to survivorship and determine any posttreatment challenges, this study explored the experiences of childhood cancer survivors (CCSs), parents/caregivers, and pediatric oncology health care professionals (HCPs) at EOT. Method: This study employed a mixed methods design. EOT Questionnaires were completed by CCSs and parents/caregivers within 6 months of completing treatment, and by pediatric oncology HCPs. Results: A total of 75 CCSs and parents/caregivers and 21 HCPs completed the study. The majority of parents/caregivers (78%) and older CCSs (94%) recalled having an EOT “meeting.” Most were satisfied with the meeting, but described unexpected worries/problems following EOT. Family members stating they were “very satisfied” with the EOT meeting increased significantly relative to the number of EOT topics addressed. In contrast, the omission of certain psychosocial discussion topics negatively correlated with satisfaction. Oncologists provided the majority of EOT services, with infrequent provision by other HCPs. Less than 20% of HCPs characterized families as “very satisfied” with EOT services and suggested improvements to meet families’ needs. Discussion: This study found unmet psychosocial and anticipatory guidance needs, indicating a lack of preparedness. The results suggest that end of cancer treatment requires a more standardized, comprehensive, and multidisciplinary approach. Enhanced education and support services are needed to promote the successful navigation of all families through this period of transition.