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Quality Of Life Of Patients With Surgically And Medically Managed Anomalous Aortic Origin Of A Coronary Artery: A Congenital Heart Surgeons' Society Study
Anusha Jegatheeswaran1, Connor P. Callahan1, Julie A. Brothers2, Marshall L. Jacobs3, William G. Williams1, Luc Mertens1, Carlos M. Mery4, Silvana Molossi5, Christopher A. Caldarone5, Craig E. Fleishman6, Brian W. McCrindle1.
1Hospital for Sick Children, Toronto, ON, Canada, 2Children's Hospital of Philadelphia, Philadelphia, PA, USA, 3Johns Hopkins University, Baltimore, MD, USA, 4University of Texas at Austin, Austin, TX, USA, 5Texas Children's Hospital, Houston, TX, USA, 6Arnold Palmer Hospital, Orlando, FL, USA.

Objective: AAOCA management aims to decrease sudden death and patient/family concerns, while optimizing quality of life (QOL). Using the CHSS cohort, we compared the QOL of: 1)all patients to normative data, and 2)surgical to medical patients. Methods: Patients ≤30y at enrollment (n=455) and their proxies were sent age-specific PedsQL Generic Core Scales-4.0 (CS) and Cardiac Module-3.0 (CM) questionnaires. Higher domain scores indicate better QOL. Results: Questionnaires were returned for 117 patients (Dec/2018-Jul/2019, 28 institutions, response age 15.1y [2.6-35.7]). Comparing CS data from responders to normative data (Table-1), patients/proxies only reported higher Physical Functioning (p<0.001), with score differences exceeding the minimal clinically important difference.For CS, proxy scores for surgical vs. medical patients were lower for Total Score, Psychosocial Health Summary, and School Functioning. Both patient groups self-reported similar scores for CS.For CM, patients/proxies for surgical patients (vs. medical) reported lower Perceived Physical Appearance (patients: 7725 vs. 8818, p=0.02, proxy: 7427 vs. 9316, p=<0.001) and more Cognitive Problems (patients: 7624 vs. 8424, p=0.03, proxy: 7126 vs. 8325, p=0.02). Lower scores were associated with taking more medications, more recent surgery, and younger surgical age. Conclusions: Patients/proxies felt all patients did physically better, and the same psychosocially as healthy peers, but surgery resulted in cognitive/physical appearance QOL issues. Only proxies felt surgical patients did worse in several CS. Qualitative research would enrich understanding of these quantitative data.


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