Electronic Personal Health Records for Childhood Cancer Survivors: An Exploratory Study.

Purpose: Childhood cancer survivors have complex healthcare needs that may be effectively communicated using electronic personal health records. This study explores the knowledge, interest, and attitudes of a sample of survivors and some of their caregivers towards electronic personal health records (ePHRs). Methods: This descriptive study was conducted in a pediatric hematology-oncology clinic and associated survivorship clinic with a convenience sample of caregivers of survivors who were <14 years old and survivors ≥14 years old along with their caregivers when present. A semi-structured interview was conducted with survivors and some caregivers to understand their knowledge, interest, and attitudes towards adoption of ePHRs. Results: Interviews were completed with 11 caregivers of young survivors, four survivors alone, and five survivor–caregiver dyads. Survivors ranged in age at diagnosis from 1 to 17 years old. Among the ethnically diverse sample, approximately half of the nine survivors and 25% of 1...