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Transition of Care in Subspecialty Pediatrics: We Need To Do Better :

August 19, 2021

The transition period, when young adults with chronic disease move between pediatric and adult care, is when patients are at the highest risk for falling out of care. In the case of congenital heart disease (CHD), as is true for many other pediatric chronic diseases, improvements in care have led to a decline in childhood CHD mortality over the last 20 years, with an estimated 1.4 million survivors reaching adulthood.1,2

The transition period, when young adults with chronic disease move between pediatric and adult care, is when patients are at the highest risk for falling out of care. In the case of congenital heart disease (CHD), as is true for many other pediatric chronic diseases, improvements in care have led to a decline in childhood CHD mortality over the last 20 years, with an estimated 1.4 million survivors reaching adulthood.1,2 However, these patients require lifelong care for the best quality of life and long-term outcomes.

Disparities in the medical care of the growing chronic disease adolescent population exist, including poor transition from child-centered to adult-centered healthcare (an age and developmentally dependent process that addresses medical, psychosocial, and educational/vocational aspects)3,4 and lack of appropriate transfer of care (the point at which an adult provider assumes the medical care of a patient).4,5,6 This is concerning as many patients drop out of active health care during this time, with gaps in care affecting up to 60% of all CHD patients.  Furthermore, it is estimated that only 10% of adults with congenital heart disease (ACHD) are in appropriate care.7 Unfortunately, lapses in care appear to be predictors for morbidity and poor outcomes, particularly for minority populations.5, 8, 9

In 2008, the American College of Cardiology (ACC)/American Heart Association (AHA) published a statement for the management of ACHD, including guidelines for successful transition of care.10 In 2011, best practices in managing transition of adolescents with CHD to adulthood was published by the AHA.5 Today, despite over two decades of national efforts, there are still unmet needs for this high-risk population.  There are several reasons this is likely the case for CHD (as well as other pediatric chronic diseases):

  • Lack of knowledge surrounding the need for lifelong subspecialty care.  The US is described as having the highest number of gaps in care in the world with over 50% of those with gaps in the moderate to severe CHD category.11 Even in countries that have universal health care, studies show that more than one quarter (27%) of patients aged 19–21 report having had no cardiac appointments since 18 years of age.12 Further, who you get your medical care from matters. A recent study has even shown that ACHD patients under cardiology follow-up had a significantly lower risk of death compared to those only followed by a primary care provider.13
  • Lack of transition programming and reimbursement. Transition programs in CHD have been shown to have the potential to reduce discontinuity of care (12.7%) compared with usual care (36.2%), pointing to its importance during the transition period.11 Many transition programming tools are available, such as the Six Core Elements (a structured customizable transition process that can be applied to many different types of transition care models), which can be used in primary and specialty care practices.14 Certain payment approaches can be used to assist health care clinicians in implementing recommended pediatric-to-adult transition services, but the ability to do this may be hindered by hospital billing practices, who is providing transition education and when/where transition services are being delivered.15
  • Lack of trained physicians and centers to take care of aging populations with pediatric chronic diseases. For example, only 447 U.S. physicians are ACHD board certified to care for the quickly growing aging pediatric CHD population.16  Based on the 2010 estimated ACHD population, this means the ratio of board-certified ACHD physicians to ACHD patients in the U.S. is ~1:4,500.17 Beyond this, not all cardiac centers are equipped to care for young adults with CHD, particularly adult centers with a low volume of CHD surgeries and by adult cardiothoracic surgeons, as this portends worse outcomes for this high-risk population.18
  • Lack of or insufficient insurance for lifelong care. Patients with pediatric chronic diseases, like CHD, have long complained that a significant barrier to lifelong care is the ability to maintain insurance.19 While key provisions of the affordable care act (ACA) have improved continuity of care for pediatric chronic disease, a recent study demonstrated that despite the ACA, transition-aged ACHD patients had higher uninsured rates than older patients, and Hispanic patients remained the least insured transition-aged group.20 

There is a need for increased opportunities to implement transition programs and tools and develop coordinated and innovative transition and transfer processes for pediatric chronic disease patients. Implementation of transition programing, improved reimbursement for transition programs, reducing structural barriers to providing care, increasing trained providers and centers to care for aging pediatric chronic disease populations are all critical to the success of improving the transition and transfer process for those with pediatric chronic disease.


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  12. Reid GJ, Irvine MJ, McCrindle BW, Sananes R, Ritvo PG, Siu SC, Webb GD. Prevalence and correlates of successful transfer from pediatric to adult health care among a cohort of young adults with complex congenital heart defects. Pediatrics. 2004;113(3 Pt 1):e197-205. doi: 10.1542/peds.113.3.e197. PMID: 14993577
  13. Diller GP, Orwat S, Lammers AE, et al. Lack of specialist care is associated with increased morbidity and mortality in adult congenital heart disease: a population-based study [published online ahead of print, 2021 Jul 16]. Eur Heart J. 2021;ehab422. doi:10.1093/eurheartj/ehab422
  14. White PH, Cooley WC, Transitions Clinical Report Authoring Group, American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians Supporting the Health Care Transition from Adolescence to Adulthood in the Medical Home. Pediatrics. 2018;142(5):e20182587. DOI: 10.1542/peds.2018-258716
  15. Got Transition. Six core elements of health care transition. Available at Accessed Aug 9, 2021
  16. American Board of Internal Medicine. Number of candidates certified. Available at Accessed Aug 9, 2021
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  18. Karamlou T, Diggs BS, Ungerleider RM, Welke KF. Adults or big kids: what is the ideal clinical environment for management of grown-up patients with congenital heart disease? Ann Thorac Surg. 2010;90(2):573-579. doi:10.1016/j.athoracsur.2010.02.078
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  20. Salciccioli KB, Salemi JL, Broda CR, Lopez KN. Disparities in insurance coverage among hospitalized adult congenital heart disease patients before and after the Affordable Care Act. Birth Defects Res. 2021 Feb 15. doi: 10.1002/bdr2.1878. Epub ahead of print. PMID: 33590705
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