Providers' Perspectives of Survivorship Care for Young Adult Survivors of Childhood Cancer.

Abstract

We examined healthcare providers' perceptions of the goals of survivorship care and survivor programs, systems-level barriers and individual patient-level barriers to engaging patients in survivorship care, and potential resources for increasing engagement. In 2012, we recruited 21 healthcare providers of young adult survivors of childhood cancers from a children's hospital and a cancer center in the Southeastern USA to complete telephone-based semi-structured interviews. The sample was 45.95 years old (SD = 7.57) on average, 52.4 % female, and 81.0 % MDs. The major goals of survivorship programs identified were medical care management (e.g., addressing late and long-term effects, providing survivorship care plans (SCPs), assisting in transition of care) and holistic care including addressing psychosocial issues and promoting healthy lifestyles. Systems-level barriers to engagement in survivorship care included limited resources (e.g., time), role confusion (e.g., within cancer centers, from treatment team to survivorship care, role of primary care providers), communication challenges within the medical system (e.g., limited tracking of patients, lack of understanding of the role of survivorship clinic), communication challenges with patients (e.g., setting expectations regarding transition to survivorship care), and lack of insurance coverage. Perceived patient-level factors included psychological barriers (e.g., fear, avoidance), resistance to survivorship care, and physical barriers (e.g., distance from survivorship clinics). Resources to address these barriers included increased access to information, technology-based resources, and ensuring valuable services. There are several systems-level and patient-level barriers to survivorship care, thus requiring multilevel interventions to promote engagement in care among young adult survivors of childhood cancer.