Extract

Care integration for patients with lifelong conditions requires successful transitions at key, high-risk times. For conditions diagnosed and traditionally managed within paediatric subspecialties, such as congenital heart disease (CHD), the period from adolescence into adulthood represents such a transition. During this important time of growth, young adults are asked to gain independence in managing their own healthcare. Failure to maintain care during transitional periods can result in a loss to follow-up and missed opportunities for secondary prevention, generating downstream complications with excess morbidity for patients. For children with CHD, procedures early in life are often palliative as opposed to curative, necessitating future interventions to ensure optimal outcomes for patients. Even many of the simple CHD lesions that can be treated with procedures that are considered ‘curative’ in childhood are increasingly being found to carry an increased risk of the development of comorbid cardiac conditions, especially arrhythmia and heart failure, in adulthood at relatively younger ages than individuals without CHD. If patients fall behind on diagnostic testing, chronic therapies, and medical team guidance, then outcomes are readily compromised. Most importantly, this failure leads to impaired functional, mental, and social well-being of the patients and their families, while also driving up resource utilization and creating challenges for the broader healthcare system.