Improving the transition from pediatric to adult care for survivors of pediatric cancer in Newfoundland, Canada

Advances in the treatment of childhood cancer have led to improved survival rates. Yet, childhood cancer survivors (CCS) have greater health risks and other health burdens that require appropriate follow-up and surveillance throughout their lives. Higher survival rates mean that significantly more pediatric oncology patients will reach adulthood and will be transitioned into adult care for their continued follow-up or aftercare. The transition from pediatric to adult-centered care is, however, increasingly being recognized as a period during which patients risk become disconnected with the healthcare system and having poorer health outcomes. This situation can be potentially very troubling for patients who require continued, regular surveillance. The focus of this doctoral research is to explore the transition from pediatric care to adult care and aftercare practices for CCS in Newfoundland (NL), Canada. Guided by the World Health Organization’s Quality of Care: A Process for Making Strategic Choices in Health Systems framework, we first reviewed models of care (MOC) and interventions aimed at improving aftercare that had been evaluated in the academic literature, including those specific to transition. We then conducted a qualitative study to detail the processes and barriers of transition for CCS in NL. Based on this information and discussions with local stakeholders, we identified the need for locally relevant educational resources. We then developed an educational workbook, titled After the Janeway, to be used by CCS in NL during their transition into adult-focused aftercare. Finally, we evaluated the workbook using a validated scale for assessing patient educational materials. The assessments clearly show that the adoption of this workbook into clinical practice should improve the experiences of CCS transitioning into adult care in NL. Collectively, our studies establish a thesis that is novel and potentially serves as the groundwork for future research related to improving the quality of the transitions and aftercare for CCS