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A transition clinic intervention to improve follow-up rates in adolescents and young adults with congenital heart disease

Published online by Cambridge University Press:  13 April 2020

Stephanie S. Gaydos Open the ORCID record for Stephanie S. Gaydos [Opens in a new window] ,
Shahryar M. Chowdhury Open the ORCID record for Shahryar M. Chowdhury [Opens in a new window] ,
Rochelle N. Judd  and
Kimberly E. McHugh
Stephanie S. Gaydos*
Affiliation:
Division of Pediatric Cardiology, Department of Pediatrics, Medical University of South Carolina, Charleston, SC, USA
Shahryar M. Chowdhury
Affiliation:
Division of Pediatric Cardiology, Department of Pediatrics, Medical University of South Carolina, Charleston, SC, USA
Rochelle N. Judd
Affiliation:
Division of Cardiology, Department of Medicine, Medical University of South Carolina, Charleston, SC, USA
Kimberly E. McHugh
Affiliation:
Division of Pediatric Cardiology, Department of Pediatrics, Medical University of South Carolina, Charleston, SC, USA
*
Author for correspondence: S. S. Gaydos, Division of Pediatric Cardiology, Department of Pediatrics, Medical University of South Carolina, Shawn Jenkins Children’s Hospital, 10 McClellan Banks Drive, MSC 915 Charleston, SC29425, USA. Tel: +843-792-3286; Fax: +843-792-3284. E-mail [email protected]
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Abstract

Background:

Children with congenital heart disease (CHD) require lifelong cardiology follow-up. Many experience gaps in care around the age of transition to adult-oriented care with associated comorbidity. We describe the impact of a clinic-based intervention on follow-up rates in this high-risk population.

Methods:

Patients ≥11 years seen in a paediatric outpatient CHD Transition Clinic completed self-assessment questionnaires, underwent focused teaching, and were followed on a clinic registry with assessment of care continuation. The cohort “lost to follow-up” rate, defined as absence from care at least 6 months beyond the recommended timeframe, was compared with a control group. Secondary outcomes included questionnaire scores and adult cardiology referral trends.

Results:

Over 26 months, 53 participants completed an initial Transition Clinic visit; 43% (23/53) underwent a second visit. Median participant age was 18.0 years (interquartile range 16.0, 22.0). The cohort’s “lost to follow-up” rate was 7.3%, which was significantly lower than the control rate (25.9%, p < 0.01). Multivariable regression analyses demonstrated clinic participation as the only factor independently associated with follow-up rates (p = 0.048). Transition readiness was associated with older age (p = 0.01) but not sex, univentricular heart, interventional history, or surgical complexity. One-third of adult participants transferred to adult care.

Conclusions:

A CHD Transition Clinic intervention can improve follow-up rates in adolescents and young adults. Age is an important factor in transition readiness, and retention of adults in paediatric care appears multi-factorial. We postulate that serial assessments of self-management, focused education, and registry utilisation may improve patient outcomes by reducing lapses in care.

Keywords

Congenital cardiologytransitionfollow-up care
Type
Original Article
Information
Cardiology in the Young , Volume 30 , Issue 5 , May 2020 , pp. 633 - 640
Copyright
© The Author(s) 2020. Published by Cambridge University Press

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