Transition from pediatric to adult aftercare for survivors of pediatric cancer in Newfoundland and Labrador: a qualitative study

Abstract

Background: Childhood cancer survivors (CCSs) face increased risks during the period when they leave pediatric care and transition into adult-focused aftercare. We examined the experiences of CCSs entering adult-focused aftercare to gain a better understanding of current transition practices and barriers to transition, and to identify opportunities for improving care.

Methods: We conducted a qualitative study using in-person and telephone semi-structured interviews. Childhood cancer survivors who recently transitioned out of pediatric care and health care providers (HCPs) who provide care for CCSs in Newfoundland and Labrador were identified using purposive sampling. Participants were interviewed between July 2017 and March 2019. Data were analyzed using both qualitative descriptive and thematic analysis.

Results: We conducted interviews with 5 CCSs and 9 HCPs. All CCSs interviewed reported receiving aftercare through their pediatric oncology program; only 2 reported receiving any form of aftercare in the adult setting. The lack of a structured transition process for CCSs in the province emerged as a theme in this study. Interview participants identified several barriers to transition: the added challenges for survivors in rural areas, changes in the availability of services after the transition to adult-focused aftercare, challenges associated with navigating the adult system, and a lack of education on transitioning into adult aftercare.

Interpretation: We found that there was little preparation for the transition of CCSs into adult care, and their aftercare was disrupted. Programs serving CCSs have opportunities to improve care by standardizing and better supporting these transitions, for example through the development of context-appropriate educational resources.

Figure 1:

Disease and treatment progression for childhood cancer survivors. “Adult” age indicates the time at which childhood cancer survivors transition to adult aftercare. This can occur when they reach the age of 18 years or when they are 10 years off treatment (whichever is later), or after they reach 18 years of age but before they are 10 years off treatment and they are deemed ready to transition by the pediatric oncologist.

Figure 2:

Current transition process from pediatric to adult care for childhood cancer survivors in Newfoundland and Labrador. The travelling clinics were run by the Janeway. Note: AFSC = adult follow-up survivorship clinic, Janeway = Janeway Children’s Health and Rehabilitation Centre.