There are more adults than children living with congenital heart disease (CHD) due to improvements in surgical and medical CHD management today. In 2011, though, fewer than 30% of adult CHD patients were following up with specialized providers. An ineffective transition from pediatric to adult-focused medical care can result in lapses in CHD medical care, patient noncompliance, and increased risk of late complications. Early involvement of a palliative care team offers development of autonomy, identification of potential barriers to care, and support for patient and family that may improve transition success and quality of life in CHD patients.
Get full access to this article
View all access options for this article.
References
1.
UzarkK, JonesK: Parenting stress and children with heart disease. J Pediatric Health Care, 2003; 17:163–168.
2.
SableC, FosterE, UzarkK, et al.: Best practices in managing transition to adulthood for adolescents with congenital heart disease: The transition process and medical and psychosocial issues: A scientific statement from the American Heart Association. Circulation, 2011; 123:1454–1485.
3.
BrattEL, BurstromA, HanseusK, et al.: Do not forget the parents-Parents' concerns during transition to adult care for adolescents with congenital heart disease. Child Care Health Dev, 2018; 44:278–284.
4.
MarinoBS, LipkinPH, NewburgerJW, et al.: Neurodevelopmental outcomes in children with congenital heart disease: Evaluation and management: A scientific statement from the American Heart Association. Circulation, 2012; 126:1143–1172.
5.
KovacsAH, UtensEM: More than just the heart: Transition and psychosocial issues in adult congenital heart disease. Cardiol Clin, 2015; 33:625–634, ix.
6.
BertaudS, LloydDF, LaddieJ, RazaviR: The importance of early involvement of paediatric palliative care for patients with severe congenital heart disease. Arch Dis Childhood, 2016; 101:984–987.
7.
GerardinJF, MenkJS, PylesLA, et al.: Compliance with adult congenital heart disease guidelines: Are we following the recommendations?. Congenit Heart Dis, 2016; 11:245–253.
8.
GoodmanDM, HallM, LevinA, et al.: Adults with chronic health conditions originating in childhood: Inpatient experience in children's hospitals. Pediatrics, 2011; 128:5–13.
9.
ClarkJK, FascianoK: Young adult palliative care: Challenges and opportunities. Am J Hosp Palliat Care, 2015; 32:101–111.
10.
OngL, NolanRP, IrvineJ, KovacsAH: Parental overprotection and heart-focused anxiety in adults with congenital heart disease. Int J Behav Med, 2011; 18:260–267.
11.
LuyckxK, GoossensE, MissottenL, MoonsP: Adolescents with congenital heart disease: The importance of perceived parenting for psychosocial and health outcomes. J Dev Behav Pediatr, 2011; 32:651–659.
12.
MorrisonWE, GauvinF, JohnsonE, HwangJ: Integrating palliative care into the ICU: From core competency to consultative expertise. Pediatric Crit Care, 2018; 19(8S Suppl 2):S86–s91.
13.
The National Alliance to Advance Adolescent Health/Got Transition. “Health Care Providers: Recommended Health Care Transition Timeline.” http://gottransition.org/providers/index.cfm, 2014.
