Hitesh Agrawal1,2, Oriana K. Wright3, Kathleen E. Carberry1,4, S. Kristen Sexson Tejtel1,2, Carlos M. Mery1,5, Silvana Molossi1,2
Congenital Heart Disease, Vol.12, No.6, pp. 721-725, 2017, DOI: 10.1111/chd.12473
Abstract Background: Long-term outcome data on patients with anomalous aortic origin of coronary
arteries (AAOCA) is sparse and they are often managed in a nonuniform manner. There is subjective perception of anxiety and unmet needs in these patients and families.
Methods: An online survey of 13 questions was sent to 74 families of patients with AAOCA
between May and October 2015. Descriptive statistics were performed.
Results: A total of 31 (47%) families responded. Of these, 27 expressed the need to interact with
other patients/families with AAOCA. The majority were interested in either face-to-face meetings
(77%) or online support groups (71%). Regarding… More >
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