Falling Between the Cracks: The Patient Perspective on Transition in Congenital Heart Disease

Due to the successful initiation of palliative cardiac procedures in the mid-twentieth century, and the continued progress in pediatric cardiac care and intervention, adults with congenital heart disease now represent a large, mature, and rapidly growing population living with newly-chronic pediatric-onset disease.  There is currently an estimated one million adults in the United States living with congenital heart disease, and this number is increasing by 5% a year.  This presentation will highlight the perspective of the adult patients themselves, drawing from the presenter's experiences as both a complex congenital heart disease survivor and as the President of the Adult Congenital Heart Association, a national nonprofit health advocacy organization serving the needs of adult congenital heart disease survivors.   Patient perspectives will also be illustrated by ACHA member survey data and from ACHA's on-line discussion board, which as of January of 2007 hosted over 24,000 conversation threads between over 2,000 registered members living with complex congenital heart disease. 

The primary goals of this presentation are (1) to provide attendees with a "patient's eye view" of the challenges of health education and transition in congenital heart disease, and (2) to suggest implications for health care professionals currently working to support successful health education and transition in this population.   Issues discussed will include the provision of overly-pessimistic and overly-optimistic prognoses, common patient misperceptions and knowledge gaps, and frustrations and dangerous encounters in the medical system. For each issue identified, the presenter will outline implications for the ACHD health professional and make recommendations for suggested best practices.