Open Access

ARTICLE

Family perception of unmet support needs following a diagnosis of congenital coronary anomaly in children: Results of a survey

Hitesh Agrawal^1,2, Oriana K. Wright³, Kathleen E. Carberry^1,4, S. Kristen Sexson Tejtel^1,2, Carlos M. Mery^1,5, Silvana Molossi^1,2

1 Coronary Anomalies Program, Texas Children’s Hospital, Houston, Texas
2 The Lillie Frank Abercrombie Section of Cardiology, Texas Children’s Hospital, Baylor College of Medicine, Houston, Texas
3 McGovern Medical School at The University of Texas Health Science Center at Houston, Houston, Texas
4 Outcomes & Impact Services, Texas Children’s Hospital, Houston, Texas
5 Division of Congenital Heart Surgery, Michael E. DeBakey Department of Surgery, Texas Children’s Hospital, Baylor College of Medicine, Houston, Texas

* Corresponding Author: Silvana Molossi, Texas Children’s Hospital, Baylor College of Medicine, 6621 Fannin Street, WT 19345-C, Houston, TX 77030. Email:

Congenital Heart Disease 2017, 12(6), 721-725. https://doi.org/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 content of the meeting, 74% were interested in brief talks by medical personnel/families, 58% suggested informal interactions with families, 55% proposed a structured discussion with a moderator and 39% mentioned fun activities/games. Regarding participants in these meetings, 90% would like to include healthcare providers, 61% suggested including family friends, 58% wished to include psychologists and 16% mentioned including social workers. The families currently use various social media including Facebook (87%), YouTube (39%), Google+ (36%), and LinkedIn (32%). For future online resources, 77% of families would like a Facebook site, an informative website (58%), a blog (52%), or an open forum (29%). The majority of the families (77%) were interested in attending a dedicated AAOCA meeting.
Conclusion: There appears to be an unmet need for family support in those affected by AAOCA, a substantial life changing diagnosis for patients and families. Further research is needed to assess quality of life in this population.

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