Childhood cancer survivors’ primary care and follow-up experiences

Abstract

Although most childhood cancer survivors see a primary care provider (PCP), little is known about these encounters. We explored themes related to survivors' (1) experiences with primary care, (2) communication with their PCPs about their cancer, and (3) their knowledge and impressions about follow-up care, including their interest in a survivor care plan (SCP). From April to July 2012, we conducted in-depth, semi-structured telephone interviews with 53 adult survivors recruited from the Utah Cancer Surveillance, Epidemiology, and End Results (SEER) Registry. Participants were randomly selected from sex, age, and rural/urban strata and were younger than 21 years at the time of diagnosis. Participants were asked if they had a PCP and whether they discussed their cancer history with their provider and their interest in a SCP. Interviews were recorded, transcribed, and content-analyzed. The average age at interview was 39.1 years (SD = 11.2). Most survivors had a current PCP (83.0 %). Almost half were not worried about their health despite having had cancer. Detailed discussions about cancer history with PCPs were generally rare. Few survivors had a follow-up care plan, but over half thought a SCP could empower their medical decision making. However, one-third of the survivors were skeptical about the usefulness of a SCP and some were worried about health-care costs. Childhood cancer survivors need better care coordination. Of concern is that many do not discuss their cancer history with their current PCPs and most have no SCP.