VPB0282 - Using an EMR patient portal for warfarin self-management: exploring children and families’ experiences

Background: Many children taking warfarin perform their International Normalised Ratio (INR) at home, with results phoned to a clinician who instructs warfarin-dosing. International data suggests parents can be supported to make warfarin-dosing decisions themselves, a process known as patient self-management (PSM).

Aims: This study explored patient and family confidence and competence with warfarin PSM in children using an Electronic Medical Record (EMR) Patient Portal.

Methods: Children currently performing INR self-testing were eligible. Participation involved attending an individualised education session, adherence to the warfarin PSM program and participation in phone interviews. Clinical outcomes (INR time in therapeutic range and safety outcomes) were assessed and family confidence and competence in PSM was explored. The hospital human research ethics committee approved the study and consent was obtained from parents.

Results: 24 families undertook PSM. Children’s median age was 11 years and all children had underlying congenital heart disease. Pre PSM the median time the INR was in therapeutic range was 72%; this increased to 81% during PSM (p < 0.001). There were no adverse events. Eight families participated in a phone interview. The major theme identified was empowerment; all parents commented that PSM empowered them and/ or gave them some control over their child’s health. Minor themes that emerged included gaining knowledge;, trust and responsibility builds confidence;, saving time; and resources as a safety net (Figure 1).

Conclusion(s): This study demonstrates that communication via an EMR Patient Portal is satisfactory to families, offering a safe and efficacious option for PSM for children. PSM empowered and built confidence in families to manage their child’s health. Using the patient portal for PSM transformed an existing therapeutic relation between clinicians and family; families were empowered to manage their child’s warfarin but still connected to clinicians remotely. This study represents diversification of how the patient/ clinician relationship can exist in the digital age.