Mother Knows Best: Medical Record Management for Patients with Spina Bifida During the Transition from Pediatric to Adult Care

The personal health record has potential to improve health care transition for an emerging population of pediatric patients with complex chronic conditions who survive to adulthood. In this study qualitative techniques were used to assess how young adults with spina bifida and their parents interact with their medical records. Condensation and categorization strategies for inductive research based on Grounded Theory were used to analyze 1) Who is involved in record keeping 2) How the information is stored 3) What information is kept and shared among the different constituencies and 4) When patients and parents need the information. Theme analysis revealed that mothers play a central role in the medical record management of adolescents with spina bifida. The parent-maintained home based records served as a linking pin in a heterogeneous healthcare information environment. These records tended to be organized as time-lines. Parent and patients were concerned about how best to transition their health information management from parent to adult children. Patients and parents uniformly supported the idea of having access to the medical record on-line.