Appropriate disease and treatment knowledge is important in preparing adolescents with hemophilia for transition to adult care.

Improved tailored communication between HTC staff and patients fosters medical independence.

THSNA 2018 (San Diego, CA, March 7-10): Age appropriate disease and treatment knowledge is important in preparing adolescents with hemophilia for transition to adult care. A pediatric hemophilia treatment center (HTC) used quality improvement (QI) methodology to document hemophilia specific knowledge in order to foster medical independence.

Vandersluis and colleagues conducted a study at a pediatric hemophilia treatment center where they developed, implemented and tested a standardized transition tool. From March 2016 to June 2017, a 19 item tool was used to assess hemophilia knowledge (6 items) and treatment (13 items) in adolescents ages 15-21.

The tool was administered by hemophilia staff using a standard script, and used to tailor the patient visit in a manner that educated patients and families based on knowledge gaps (for example, incorrectly answered items). The tool was scored and results were entered into a password protected database. Each item had a score of 0 to 2 for a total score range of 0 to 38 points (item score of 0 = incorrect/incomplete answer, 1 = patient answered with assistance, 2 = patient answered independently correctly).

Median baseline score for patients with mild/moderate hemophilia (n=14) was 14 points, significantly lower than those with severe hemophilia (n=15) with median 27 points (p=0.016). Of the 8 patients with multiple assessments, 5 improved their scores by an average of 9 points, and 3 patients had decreased scores by an average of 5 points.

The project resulted in tailored communication between HTC staff and patients moving them towards improved knowledge and medical independence .Next steps include expansion of the project to additional age patients to further enhance patient/family knowledge and promote successful transition.