Aims Adolescents and young adults (AYA) with congenital heart disease (CHD) are a high-risk group particularly during the transition period from pediatric to adult care. We aimed to create a clinic-based tailored CHD transition program to improve adolescent knowledge and activation, increase participation in shared-decision making, and facilitate patient empowerment through Instructional Conversations (IC).
Methods We conducted a needs assessment with key stakeholders (pediatric and adult cardiologists, parents, and adolescents with CHD) to identify potential barriers to transition. A three-pronged approach was taken to spearhead transition education: (1) Streamlining dedicated transition visits; (2) Creating individualized learning plans (ILP) to encourage shared decision making and patient engagement: and (3) Utilizing motivational interviewing (MI) and instructional conversation (IC) to administer a novel patient activation tool: CHHATT- The Congenital Heart Health Activation Transition Tool.
Results Six Plan-Do-Study-Act (PDSA) cycles were conducted and included streamlining educational/assessment materials, modifying teaching style, implementing MI and IC, and creating the CHHATT tool. During PDSA cycles, three major themes emerged regarding patient activation and engagement. First, families better received transition services if given advanced notice. Thus, we built separate clinic visits for program introduction (14 year old) and serial education/training visits (15 year old). Second, having a streamlined script for education of various CHD diagnoses and creating ILPs resulted in increased patient engagement and shared decision-making. Third, patient self-assessments poorly revealed true knowledge deficits. MI was used to reveal these deficits through creation of a CHHATT tool, which reveals knowledge/skills gaps and reinforces education through guided IC. Patients demonstrated increased confidence when using the CHHATT to teach-back to parents and ask physician questions. Parents’ verbalized satisfaction in the increased empowerment teens demonstrated after serial visits using CHHATT.
Conclusion We created a CHD transition program for AYA with streamlined serial education, individualized learning plans, and motivational interviewing and instructional conversation. Patients demonstrated increased activation and engagement using our novel tool CHHATT. We strive to lead transitional clinical care and further patient success by (1) introducing additional assessment tools for health literacy and resilience and (2) guiding clinical practice by sharing our sustainable/billable program model for CHD transition programs.
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