Author + information
With improved pediatric care there are now more than 1 million adults with congenital heart disease (ACHD) in the U.S. It is well known that loss of care (LC) is linked to poor long term outcomes in ACHD. Previous U.S. studies have investigated LC in a biased population. We sought to describe the major factors leading to LC in a U.S. population of adult patients (pts) with CHD.
All pts 16-17 yrs. old with CHD seen in 2003 at a free-standing children's hospital were included, regardless of whether they continued cardiology care. Several methods to contact pts and document long term follow-up were utilized. When found, subjects completed a questionnaire addressing demographics, knowledge of their cardiac defect, and barriers to seeking medical care. Subjects with no documented cardiology follow-up visits (adult, pediatric, or ACHD) since 1/2007 were deemed LC.
Of 197 eligible pts, a total of 74 pts (37.6%) were LC as of 2011. 58 of 197 pts (age 24y ±1.22) completed the survey. Among those LC who were successfully contacted, 46.7% were not receiving any medical follow-up. A higher complexity of CHD (p<0.01) and use of prescription cardiac medications (p<0.001) were associated with an increased likelihood of long term follow-up. Care provided by an ACHD specialist (p<0.001) and focused education regarding the need for specialized long-term care (p<0.003) were associated with improved continuity. Though often cited by pts as a major barrier, lapses in insurance were not a statistically significant reason for LC (p=0.08).
Our study demonstrated, for the first time, that in an unbiased U.S. population over 1/3 of CHD pts have LC from age 16-17 to adulthood. Nearly 1/2 of those do not maintain any medical follow-up. Improved cardiac follow-up was found in those who were followed by an ACHD provider, received directed CHD education, used cardiac medications, and had a higher complexity of CHD. Lower complexity of CHD and a lack of access to specialized ACHD care may be precipitating factors for LC. Improving LC in the U.S. by establishing successful transition in CHD is critical and must be addressed to improve the long-term outcomes for this growing population.
Moderated Poster Contributions
Poster Sessions, Expo North
Saturday, March 09, 2013, 3:45 p.m.-4:30 p.m.
Session Title: Congenital Cardiology Solutions: Trends, Knowledge and Outcomes
Abstract Category: 12. Congenital Cardiology Solutions: Adult
Presentation Number: 1161M-136
- 2013 American College of Cardiology Foundation