Realist Review of Care Models That Include Primary Care for Adult Childhood Cancer Survivors

Abstract

Abstract Appropriate models of survivorship care for the growing number of adult survivors of childhood cancer are unclear. We conducted a realist review to describe how models of care that include primary care and relevant resources (eg, tools, training) could be effective for adult survivors of childhood cancer. We first developed an initial program theory based on qualitative literature (studies, commentaries, opinion pieces) and stakeholder consultations. We then reviewed quantitative evidence and consulted stakeholders to refine the program theory and develop and refine context-mechanism-outcome hypotheses regarding how models of care that include primary care could be effective for adult survivors of childhood cancer. Effectiveness for both resources and models is defined by survivors living longer and feeling better through high-value care. Intermediate measures of effectiveness evaluate the extent to which survivors and providers understand the survivor’s history, risks, symptoms and problems, health-care needs, and available resources. Thus, the models of care and resources are intended to provide information to survivors and/or primary care providers to enable them to obtain/deliver appropriate care. The variables from our program theory found most consistently in the literature include oncology vs primary care specialty, survivor and provider knowledge, provider comfort treating childhood cancer survivors, communication and coordination between and among providers and survivors, and delivery/receipt of prevention and surveillance of late effects. In turn, these variables were prominent in our context-mechanism-outcome hypotheses. The findings from this realist review can inform future research to improve childhood cancer survivorship care and outcomes.