Implementation of transition programs can prevent another lost generation of patients with congenital heart disease

Eur J Cardiovasc Nurs. 2008 Dec;7(4):259-63. doi: 10.1016/j.ejcnurse.2008.10.001.

Abstract

Congenital heart disease is the most frequently occurring birth defect. To date, more than 90% of the children born with a heart defect reach adulthood. Since many patients are prone to residua and sequelae, lifelong specialized care is required. However, studies indicate that about one-half to three-quarters of the patients are lost to follow-up when they have grown up. This has resulted in a virtual lost generation. Lapse of care is associated with significant morbidity. Therefore, implementation of strategies to prevent patients from failing to continue regular follow-up is critical. It is argued that transition programs that inform patients about the rationale for ongoing follow-up and that teach them how to navigate the medical system can avoid another lost generation.

Publication types

  • Comment
  • Editorial
  • Research Support, Non-U.S. Gov't
  • Review

MeSH terms

  • Adolescent
  • Adult
  • Aftercare / organization & administration*
  • Child
  • Continuity of Patient Care / organization & administration*
  • Health Services Needs and Demand
  • Heart Defects, Congenital / complications
  • Heart Defects, Congenital / epidemiology
  • Heart Defects, Congenital / prevention & control*
  • Humans
  • Longevity
  • Morbidity
  • Patient Education as Topic / organization & administration*
  • Program Development
  • Treatment Outcome