Congenital Heart Patients Require Long-Term Coordinated Care

Jeremy Nicolarsen, MD, FACC
Director, Providence Adult and Teen Congenital Heart Program (PATCH)

Through advances in prenatal diagnosis, perioperative care, surgical technique, post-operative and long-term management, care of patients with congenital heart disease (CHD) has improved substantially over the past 60 years.  While infants and children with many forms of CHD once had limited prospects for survival and sometimes only palliative surgeries fraught with risk and complications, now most children born with CHD can expect to survive to adulthood.1,2  In fact, in 2010 it was estimated that there were 1.4 million adults living with CHD in the US.3  Importantly, those with complex defects continue to make up an increasingly large portion of these patients.4  The shift in the demographics and complexity of patients with CHD have brought new challenges for patients, providers, and health systems. Now more than ever, comprehensive care for the adult congenital heart disease (ACHD) patient is essential.

As in many chronic diseases that span a lifetime, CHD care requires a team-based approach and access to high-quality subspecialty services.  This is often best coordinated at an ACHD referral center with providers trained in the care of adults with CHD.  It has been shown that outcomes – hospitalization rates, lengths of stay, and mortality – improve when patients are cared for at such specialty centers.5  Despite the increasing awareness of the need for specialized ACHD care, there are still not enough providers and locations providing that care.  A multi-center study from 2013 surveyed new patients to ACHD practices and found that 42 percent had lapses of cardiovascular care of three years or more, and 26 percent of those were patients with severely complex disease.  What is the single greatest reason for that lapse in care? According to that study – it is access to an ACHD program or center6.

The Providence Adult and Teen Congenital Heart Program (PATCH) in Spokane was recently recognized as an ACHA ACHD Comprehensive Care Center, one of the first in the country.  Learn more about the PATCH program and the ACHA accreditation process.

For additional information, Jeremy Nicolarsen, MD, FACC, at 509-474-6707.

 

  1. Warnes CA, Liberthson R, Danielson GK, et al. Task force 1: the changing profile of congenital heart disease in adult life. JACC. 2001;37(5):1170-1175.
  2. Moons P, Bovijn L, Budts W, Belmans A, Gewillig M. Temporal Trends in Survival to Adulthood Among Patients Born With Congenital Heart Disease From 1970 to 1992 in Belgium. Circulation. 2010;122(22):2264-2272. doi:10.1161/CIRCULATIONAHA.110.946343.
  3. Gilboa SM, Devine OJ, Kucik JE, et al. Congenital Heart Defects in the United States – Clinical Perspective. Circulation. 2016;134(2):101-109. doi:10.1161/CIRCULATIONAHA.115.019307.
  4. Marelli AJ, Mackie AS, Ionescu-Ittu R, Rahme E, Pilote L. Congenital Heart Disease in the General Population: Changing Prevalence and Age Distribution. Circulation. 2006;115(2):163-172. doi:10.1161/CIRCULATIONAHA.106.627224.
  5. Mylotte D, Pilote L, et al. Specialized Adult Congenital Heart Disease Care: The Impact of Policy on Mortality. Circulation. 2014;129(18):1804-12. doi:10.1161/CIRCULATIONAHA.113.005817.
  6. Gurvitz M, Valente AM, et al. Prevalence and Predictors of Gaps in Care Among Adult Congenital Heart Disease Patients: HEART-ACHD (The Health, Education, and Access Research Trial). JACC. 2013;61(21):2180-4. doi: 10.1016/j.jacc.2013.02.048