The psychological impact of the diagnostic pathway for inherited cardiac conditions in children and adolescents: A systematic review of the literature

Background: Inherited cardiac conditions are a group of genetically linked and potentially life -threatening cardiovascular disorders. Newly diagnosed individuals need to come to terms with the impact on their lives, relationships, families, recreational activities, and employment. Aim of review: The aim of this review was to evaluate the psychological impact of screening for and diagnosis of an inherited cardiac condition in children and adolescents. A systematic review was undertaken utilizing PRISMA guidelines. PubMed, Medline, PsychART, PsychInfo, Journals@OVID, Embase, CINAHL, and Cochrane were systematically searched with a secondary search using Ethos, Core, Open Grey, NICE, and HMIC for the period January 2000 to June 2023. The quality of the studies was assessed utilizing Joanna Briggs Institute quality checklists. A convergent -segregated narrative synthesis was used to evaluate and address the identified studies' heterogeneity. A total of 15 studies met inclusion criteria. Seven factors were identified to affect outcomes, including age, parental influence, family history, familial nature, diagnosed condition, management strategies, and support and understanding. These factors can positively impact, leading to adaptation and improved outcomes, or negatively impact, leading to uncertainty and poor outcomes. Key scientific concepts of review: The most significant factors that negatively affect outcomes were family history of sudden cardiac death or adverse events, physical activity restrictions, and lack of support and understanding. Improved psychological outcomes were linked to a higher level of understanding and support. Psychological challenges were identified to affect children and adolescents on an individualized basis. Specialized multidisciplinary team support is crucial in promoting understanding, helping remove uncertainty, and improving outcomes.