Advocacy & Research
Current Research in the Field
MISSED APPOINTMENT SURVEY MONKEY RESULTS
By Donna Smith
An estimated 1,000,000 adult Americans have congenital heart defects (CHD), yet less than 10% are receiving the recommended care. How do we find those missing adults? It would help to know how they became lost to care and what could bring them back.
To find out those answers and more, ACHA conducted an online “Gap in Care” survey of 1,480 of its patient members. A “gap in care” was defined as not seeing a cardiologist for at least three years. Nearly 15% responded. Here are some highlights:
- 67% experienced a gap in care;
- 38% had a gap of more than 10 years;
- 84% had their first gap in care between the ages of 18 and 25;
- 46% had a gap in care because they did not think they needed to see a cardiologist;
- 48% came back into care because of new symptoms;
- 59% are currently being seen at ACHD program;
- 13% are not regularly seeing a cardiologist today.
What did we learn? People most often drop out of care because they do not know they need on-going care. Had they known and were they receiving proper cardiac care, they might have prevented or diminished the new, unexpected symptoms and health problems that brought them back to care.
Knowledge is power. Learn all you can about your defect. Maintain on-going care from an ACHD-trained cardiologist. Help ACHA find those missing adults!