Clinical Review

Adults with Congenital Heart Disease: The Critical Transition from Pediatric to Adult Care



Loss of insurance coverage is a major issue for transitioning patients; while adolescents with complex medical conditions are eligible for Medicaid to help cover the significant cost of their health care that goes beyond the abilities of private insurance, this eligibility ends when the patient turns 21. Additionally, the Social Security Administration re-determines supplemental security income (SSI) eligibility when the patient turns 18, and about one-third of patients lose their SSI benefits. Without appropriate guidance in navigating the nuances of insurance, many patients are at risk of losing coverage for their health care expenditures as they transition. Uninsured adults with a chronic condition are 8 times more likely to have unmet medical needs and 6 times more likely to have no access to routine care than insured young adults, with a 35% likelihood of the unmet medical need being due to cost.68 Undoubtedly, linability to pay for health care contributes to the lack of follow-up in the adult population, and MLPs may be a valuable tool to aid in ameliorating this problem.

Studies have shown that when legal services are used to address the social determinants of health, patients with chronic illnesses such as asthma and sickle cell disease have reduced hospital admissions.69,70 Other studies have shown utilization of MLPs has reduced spending on the care of high-need, high-use patients.71 According to a 2016 national survey of health care organizations conducted by the National Center for Medical-Legal Partnership, 39% clinicians reported improved compliance with medical treatment and 66% reported improved health outcomes after their patients received MLP services.72 Families referred to MLPs have shown increased access to health care, food, and income resources, and two-thirds reported improved child health and well-being.73 Given the numerous challenges faced by patients with CHD, involving MLPs as a part of both the transition process and the patient-centered medical home benefits these patients greatly and allows them to maximize their quality of life.


As more patients are living to adulthood with CHD, there is an increasing need for long-term care and adequate follow up, especially regarding the need for re-intervention and management of physiologic consequences of acquired cardiopulmonary, gastrointestinal, and renal disease in the setting of underlying congenital heart lesions. Beyond the purely medical aspects of the individual’s long-term management, psychosocial issues must be addressed, including preparing the individual for future employment and family counseling. Crucial to this process is the implementation of a comprehensive transition that begins in early adolescence and enables patients to take charge of their disease process in adulthood and ultimately enables them to maximize their quality of life and societal contributions. Towards this end, the role of MLPs may be important in ensuring that local, state, and federal policies that promote health harming norms are addressed.

Acknowledgments: We thank Dr. Frances ‘Kitty’ O’Hare and Bobbie Lewis for inviting us to submit this review; Dr. Russ Kolarik, Current Med-Peds Residency Program Director and Former President of the National Med-Peds Program Directors Association; and Dr. Peter Tilkemeier, Chairman, Department of Internal Medicine at Greenville Health System, for his unending support of our ACHD program. We also thank our patients, whose resounding resilience in the face of ongoing medical and psychosocial challenges remains our daily inspiration.

Corresponding author: Manisha S. Patel, MD, Department of Medicine and Pediatrics, Division of Cardiology, University of South Carolina School of Medicine, Columbia, SC;

Financial disclosures: None.

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