Physician needs and preferences for information about long-term follow-up and care of survivors of childhood cancer.

Abstract

66 Background: The treatments that childhood cancer survivors (CCS) undergo can lead to an increased risk of other health problems later in life, and risk-based follow-up care is necessary throughout their lifetime. Regrettably, family physicians caring for CCS often report having no record of their patients’ past disease, treatment history, or need for follow-up. As the large majority of CCS will transition from specialized pediatric oncology care to generalized adult care in the community, detailed treatment summaries and Survivorship Care Plans (SCP) are needed to ensure that both the survivor and their care providers are adequately informed of the survivors diagnosis, treatment(s), potential risk for late effects, and long-term surveillance and healthcare needs. This qualitative study sought to explore the needs, preferences, and the perceived utility of SCP for family physicians (FP) caring for CCS. Methods: Using publically available Children’s Oncology Group guidelines, a de-identified sample SCP indicating the diagnosis, treatment(s) received, and follow-up recommendations for a common childhood cancer diagnosis was automatically generated using a newly developed algorithm and patient data from the Cancer in Young People – Canada registry. Semi-structured telephone interviews with six FP that have a known CCS in their practice were then used to gain insight into the FP perceived role in the long-term management and care of CCS, their cancer information needs, concerns with communication, their perceived utility of the SCP, and preferred format(s) for receiving the SCP. The constant comparative method was used for thematic analysis. Results: The key themes emerging from the six completed interviews include a lack of confidence among FP in their ability to care for CCS and a need for additional knowledge and resources. FP also identified psychological barriers to cancer care discussions with CCS and identified a patient need for greater psychological support. Overall, SCP were viewed as helpful. Conclusions: SCP are perceived to be of benefit to FP of CCS as they serve to increase their knowledge of patient diagnosis, treatments received, and suggested risk-based follow-up.