Electronic Health Record Tools to Promote Transition Readiness and Knowledge for Adolescents and Young Adults with Hemophilia
Authors: Parker Jacob , Farrow Katharine , Brooks Rosalie , Leonard Danielle , Cortez Fernanda , Thornburg Courtney D. 
Published: November 2019

Introduction: Challenges to the transition of care for adolescents and young adults with bleeding disorders negatively impact clinical outcomes. Transition of care is a Healthy People 2020 measure, and many Hemophilia Treatment Centers (HTCs) in the United States are developing a systematic approach based on the Got TransitionTM framework, which includes six core elements designed to aid patients and their families during this vulnerable period. To improve the quality of care delivered to transition-aged individuals with hemophilia, we developed a quality improvement initiative (QI) to track and monitor transition, to assess transition readiness, and to provide education based on patient-centered goals. Our global aim is to improve transition readiness and rate of successful transfer to an adult hemophilia provider by age 18-21y. We report results for the specific aim to increase the percentage of transition-aged individuals who complete transition readiness assessments and receive patient-centered goals education at annual comprehensive clinic appointments over a six-month cycle from 0 to 80%.

Methods: We developed metrics and reports in Epic (electronic health record system) to track patients with hemophilia aged 12y and older who are eligible to begin the transition process. We also developed a Transition Readiness Assessment and a 15-question hemophilia-specific Skills Practicum to be completed by the patient in EPIC during their appointment. Based on responses to the Transition Readiness Assessment, patients select 2-3 goals for the year. Each selected goal generates a corresponding education handout. The tools are completed by patients with hemophilia between the ages of 12-21y at the time of rooming by the medical assistant for the annual comprehensive clinic appointment. Patients are excluded if they have significant developmental delays. During the appointment, the child life specialist for the HTC reviews the results of the Skills Practicum with the patient, and the HTC nurse reviews the Transition Readiness Assessment and the education handouts with the patient. Descriptive statistics were used to analyze the population and the results.

Results: During the QI cycle, 20 of 43 transition-aged patients attended a comprehensive clinic visit and 17/20 (85%) completed all age-appropriate assessments. Patient characteristics and transition readiness results are shown in Table 1. The most frequently selected patient goals were "know my doctors' and nurses' names and roles" (29%), "know my doctor's phone number and call my doctor's office to make or change an appointment" (65%), and "have access to MyChart account and check MyChart" (47%). Four questions on the Skills Practicum test how to read a prescription. Five patients (29%) correctly answered all four questions.

Conclusions: In summary, the Epic transition tools were successfully integrated into the HTC comprehensive clinic workflow, and 85% of eligible patients completed the assigned assessments. Utilization of MyChart is low, and access to MyChart was a frequently selected goal. Further work is underway to increase MyChart utilization which would facilitate workflow changes such that assessments may be completed in MyChart before the visit and educational and other resources can be accessed in MyChart. Achievement of patient goals, improvements in knowledge (e.g. how to read a prescription), and successful transfer are being tracked over time.

Disclosures

Thornburg: Sanofi Genzyme: Other: Data Safety Monitoring Board; Sanofi Genzyme: Research Funding; NovoNordisk: Research Funding; Genentech: Speakers Bureau; Bluebird bio: Other: Data Safety Monitoring Board; Ironwood: Other: Data Safety Monitoring Board.