Functional classification of heart failure before and after implementing a healthcare transition program for youth and young adults transferring from a pediatric to an adult congenital heart disease clinics

Objective: To describe changes in functional status between the last pediatric and first adult congenital heart disease (CHD) clinic visits in patients with moderate to severe CHD after implementing a healthcare transition (HCT) planning program. Design: Quasi-experimental design. Patients were followed prospectively following the implementation of the intervention; Control patients transitioned from the Pediatric CHD Clinic into Adult CHD Clinic before the intervention. Setting: Texas Children's Hospital (TCH). Patients: Sixteen to 25-year-olds, cognitively normal, English speaking patients with moderate to severe CHD who transitioned from the Pediatric to the Adult CHD clinic. Interventions: An EMR-based transition planning tool (TPT) was introduced into the Pediatric CHD Clinic. Two nurses used the TPT with eligible patients. Independent of the intervention, two medicine-pediatric CHD physicians and one nurse practitioner were added to the ACHD Clinic to address growing capacity needs. Outcome Measures: The New York Heart Association Functional Classification of Heart Failure (NYHAFS). Results: Control patients waited 26619.2 months after their last pediatric clinic visit for their first adult visit. Intervention patients waited 1368.3 months (P = .019). Control and Intervention patients experienced a lapse in care greater than two (50% vs 13%, P = .017) and three (30% vs 0%, P = .011) years, respectively. The difference between the recommended number of months for follow-up and the first adult appointment (15.1 +/- 17.3 Control and 4.4 +/- 6.1 Intervention months) was significant (P = .025). NYHAFS deteriorated between the last Pediatric visit and the first ACHD visit for seven (23%) Control patients and no Intervention patients (P = .042). Four of seven Control patients whose NYHAFS declined had a lapse of care of more than two years. Conclusions: There is a need for improved HCT planning for patients with moderate to severe CHD, otherwise, lapses of care and adverse outcomes can ensue.