513 - Novel Approach to Lifelong Single Ventricle Interdisciplinary Care Using a Telehealth Clinic Model

Publication Number: 513.5864

Kristen Stefanski, Akron Children's Hospital, Akron, OH, United States; Katie T. Chong, Northeast Ohio Medical University, Rootstown, OH, United States; Miraides Brown, Akron Children's Hospital, Akron, OH, United States; Kathyrn Wheller, Akron Children's Hospital, Akron, OH, United States

Background: Increasing longevity in patients with single ventricle heart disease (SVHD) necessitates lifelong monitoring for multisystem comorbidities. Interdisciplinary clinics are a best practice in SVHD care, but many are limited to a single stage of repair in traditional clinic settings.

Objective: To evaluate the feasibility and effectiveness of a novel interdisciplinary Lifelong Interventions Focused on Thriving (LIFT) clinic that follows SVHD patients through all stages of repair using a telehealth model.

Design/Methods: We used the Supporting Pediatric Research Outcomes and Utilization of Telehealth (SPROUT) Telehealth Evaluation and Measurement (STEM) profile as a framework to identify outcome measures and key performance indicators. This retrospective chart review included patients 0-26 years with SVHD who completed a LIFT clinic visit from 1/1/21-12/31/22. We measured individual experience, health delivery and health outcomes using descriptive statistics, and pre- and post-clinic adherence to SVHD pathway testing using McNemar’s test.

Results: 64/111 (57.7%) eligible patients completed LIFT visits. Those with completed visits ranged in age from < 1-22 years with a mean age of 9.2 years; barriers to telehealth were identified for 15 (23%) patients. Adherence to the SVHD testing pathway improved following LIFT visits, with statistically significant increases in orders for echo (p=0.0016), labs (p <.0001), Holter (p <.0001), exercise stress test (p=0.0005) and liver elastography (p=0.025). Testing per pathway led to 4/32 (12.5%) new arrhythmia diagnoses and 15/23 (65.2%) vitamin D insufficiency diagnoses. During LIFT clinic, for those ≥12 years, transition education was initiated for 28 (100%) eligible patients, and 10 (35.7%) patients screened at-risk for depression on the Patient Health Questionnaire-9 (PHQ-9). Of all patients seen, new referrals were made to community services (33, 51.6%), mental health services (22, 34.4%), therapy services (22, 34.4%) and subspecialty services (28, 43.8%). After LIFT clinic, 32/64 (50%) patients completed evaluations with neuropsychology resulting in new diagnoses for 25/32 (78.1%) patients. Overall adaptive skills were at least one standard deviation below the mean in 10/19 (52.6%) patients.

Conclusion(s): Patients seen in LIFT Clinic became more adherent with recommended testing leading to increases in new diagnoses and interventions. The LIFT Clinic interdisciplinary telehealth model appears to be an effective means to provide higher quality, longitudinal care for this at-risk population. More research is needed on acceptability, equitable access and long-term outcomes.

Demographic Data for Patients with Completed Visits in Single Ventricle LIFT Clinic


Adherence to Single Ventricle Testing Pathway


Selected STEM Profile Outcomes