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

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). 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. 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 16 caregivers reported having some knowledge of ePHRs. Eighty-nine percent (8/9) of the survivors and 81% (13/16) of the caregivers reported that they were somewhat or very comfortable using the internet. All nine survivors and 75% of caregivers were interested in the adoption of ePHRs. Data security and privacy were the primary concerns expressed. Interest in adoption of ePHRs to manage cancer survivorship-related health information was high. Most felt that the privacy and security concerns would not prevent adoption. Additional research is needed on larger and more representative samples of survivors to understand what types of support and education are needed to effectively implement ePHRs.