Using an electronic medical record patient portal for warfarin self-management: Empowering children and parents.

Background: Many children taking warfarin perform their international normalized ratio (INR) at home, with results phoned to a clinician who instructs warfarin dosing. Data suggest that parents can be supported to make warfarin dosing decisions themselves, a process known as patient self-management (PSM). Objectives: This study aimed to determine the suitability and acceptability of warfarin PSM in children using the Epic Patient Portal. Methods: Children currently performing INR patient self-testing were eligible. Participation involved an individualized education session, adherence to the PSM program, and participation in phone interviews. Clinical outcomes (INR time in therapeutic range and safety outcomes), patient portal functionality, and family experience were assessed. The hospital human research ethics committee approved the study and consent was obtained from parents/guardians. Results: Twenty-four families undertook PSM. The median age of children was 11 years and all children had congenital heart disease. A median of 13 INRs was uploaded to the portal per family (range, 8-47) across a 10-month period. Before PSM, the mean time the INR was in therapeutic range was 71%; this increased to 79.9% during PSM (difference: P < .001). No adverse events were encountered. Eight families participated in a phone interview. The major theme identified was empowerment; minor themes that emerged included "gaining knowledge," "trust and responsibility builds confidence," "saving time," and "resources as a safety net." Conclusion: This study demonstrates that communication via the Epic Patient Portal is satisfactory to families and offers a suitable option for PSM for children. Importantly, PSM empowers and builds confidence in families to facilitate management of their child's health.

The experience of parents and children where children have been supported with a ventricular assist device as a bridge to heart transplantation.

There is little information to assist in understanding the experience endured by parents and children where children have been supported with a ventricular assist device (VAD) as a bridge to heart transplantation. Consequently, the aims of this study were to gain an understanding of children's and parents' experience where children have been supported with a VAD as a bridge to heart transplantation and to use this information to improve the Royal Children's Hospital (RCH) VAD program. This study employed a qualitative approach using purposive sampling. Semistructured interviews were conducted with children aged 13 years or more and their parents to determine their experience of having required VAD support as a bridge to transplantation. Results demonstrated a lack of information that prepared families and children for the anticipated course of treatment on VAD support. Recommendations to improve the VAD program for parents and children include more information through meetings, as well as in a written format, and speaking to other families who had already experienced VAD. For children in particular, a visual of the VAD, its associated equipment, and an image of where it is placed in the body is vital information that is necessary prior to VAD support. Overall, the recommendations are important and should be made available to improve the experience for children and parents, not only of the RCH VAD program but for all hospitals offering VAD therapy.

Australian experience with VAD as a bridge to paediatric cardiac transplantation.

The Royal Children's Hospital, Melbourne is the National Paediatric Heart Transplant Centre of Australia. A variety of ventricular assist devices (VADs) have been used effectively as a bridge to heart transplantation in adult patients, however, the experience in the paediatric population is limited. We present our initial experience using the Thoratec and Medos VAD systems as a bridge to heart transplantation in the designated centre for paediatric cardiac transplantation in Australia. The medical records of all patients supported with a Thoratec or Medos VAD at the RCH from July 2005 to July 2007 were retrospectively reviewed. Seven patients between 5 and 16 years of age were supported with the Thoratec or Medos VAD during the period of study. All of the patients were supported with a left sided ventricular assist device (LVAD). The length of time supported ranged from 6 to 230 days, with a median of 22 days. Co-morbidities included surgical re-exploration for bleeding, cannula site wound infections and thromboembolic events. Two patients died before a donor heart became available. From our limited experience, the use of a VAD as a bridge to heart transplantation is a feasible option for children with end stage cardiac failure.