CCSG Supplement: Childhood Cancer Survivors

Childhood cancer survivors residing in rural areas, many of whom travel to urban-based cancer treatment centers, may face particular challenges receiving follow-up care when returning to their home communities. Although many rural childhood cancer survivors continue to receive at least some follow-up services from cancer treatment centers, local primary care professionals (PCPs) could play an important role in attenuating rural/urban disparities in childhood cancer survivors’ access to follow-up care. Yet, we have very little information about the organizational barriers to delivering follow-up care within primary care practices (e.g., organizational support for cancer follow-up care, costs and technical support for implementing telehealth for follow-up care consultations, and partnerships with cancer treatment centers). Similarly, we have very little information about organizational factors associated with access to follow-up care from the parent perspective (e.g., the acceptability of follow-up services delivered by local or nearby PCPs, the acceptability of telehealth visits with PCPs or cancer treatment centers, and the accessibility of local or nearby PCPs). This project will examine rural/urban disparities in childhood cancer survivors’ organizational barriers to follow-up care from both the primary care physician (PCP) and parent perspective. We will conduct qualitative interviews among a sample of 20 PCPs serving rural areas to evaluate their practices’ barriers to delivering follow-up care to childhood cancer survivors. Simultaneously, we will conduct quantitative surveys among a sample of 200 parents (100 rural, 100 urban) of childhood cancer survivors to evaluate their children’s barriers to follow-up care receipt, preferences, and experiences. Specific aims are: 1. To investigate PCPs’ perceived abilities and experiences, organizational barriers, and formal and informal policy barriers to delivering follow-up care for childhood cancer survivors; and 2. To investigate the parent perspective of barriers and facilitators to the receipt of follow-up care, preferences for a combined cancer treatment center/local or nearby PCP model of follow-up care, and preferences for telehealth vs. in-person follow-up care. Kentucky provides a unique setting to address these concerns because it has a strong cancer registry and relatively high childhood cancer incidence rates, especially in the rural and highly impoverished Appalachian region. The findings will inform the potential development, implementation, or expansion of follow-up services for childhood cancer survivors residing in rural areas, including those served by the UK Markey Cancer Center.