EMPoWARed: Edmonton pediatric XXXX self-management study.

@entity1 @entity715 @entity1229
BACKGROUND: @entity1 self-management (PSM) in adults is safer and more cost effective than conventional management. @entity1229 is a narrow therapeutic index drug with individual @entity1 response to changes and frequently a long-term therapy. @entity1 and their families are proposed to be able to effectively manage their @entity1 's @entity1229 therapy. Increased health related quality of life is highly associated with effective therapy in @entity1 with chronic conditions. OBJECTIVES: The aim of this study is to evaluate the safety and efficacy of PSM over time including HRQOL and variables that may influence PFU success at PSM. @entity1 /METHODS: @entity1 and their family units (PFUs) current performing @entity1 self-testing/monitoring for >= 3months were enrolled in this cohort study. PFUs participated in comprehensive education on @entity1229 testing and management followed by an apprenticeship. Socio-demographic, clinical, and laboratory data were collected to evaluate safety and efficacy and health related quality of life. Outcomes were compared between the first 6months on PSM (phase 1) and the last 6months data collected on PSM (phase 2). RESULTS: Forty-two @entity1 performed PSM for a median of 2.7years (range: 1.1-6.2years). Time in therapeutic range was 90% and 92.9% (p=0.30) in phases 1 and 2 respectively. All measures were strongly associated with improved heath related quality of life. PFUs socio-demographic status did not influence success at PSM. All PFUs maintained @entity1229 knowledge and INR testing competency. @entity1229 dosing decision errors median 0 (range: 0-5, p=0.73) and a median 0 (range 0-4, p=0.55) per @entity1 in phases 1 and 2 respectively. There were no adverse hemorrhagic or @entity715 events. CONCLUSIONS: Empowering PFUs to self-manage @entity1229 results in increased knowledge and understanding of their health condition, improved commitment to their health care and adherence to medication regimens and is demonstrated to be sustainable over time.
