“What impact does having a diagnosis of an inherited cardiac condition have on children and young people’s physical activity and quality of life?” A scoping review

Inherited cardiac conditions (ICCs) are an umbrella group of genetic disorders affecting the heart. They are life-long conditions that are often diagnosed through family screening or after cardiac events. For many years, it has been customary practice to restrict physical activity (PA) in children to prevent ventricular arrhythmia or sudden cardiac death. This scoping review aims to identify and analyse the current literature on the impact that having a diagnosis of an ICC has on a young person’s PA and quality of life (QoL). This scoping review follows the methods of Arksey and O’Malley. Studies concerned with QoL and PA published between 1957 and 2025 were included. Literature searches were conducted across the following databases: Medline (Ovid), Scopus, Web of Science, Embase (Ovid) CINAHL, and PsycINFO. The data was extracted and charted focussing on aims, study populations, measures, and results. Data was then summarised with a descriptive summary as well as visual mapping and descriptive statistics. The review was conducted using the Preferred Reporting Items for Scoping Reviews guidelines. From a total of 1358 identified articles, 27 articles were included in the final review. There were twenty quantitative articles, three mixed method, and four qualitative studies included. Reduced QoL and mental health issues were common in this cohort. Children with ICCs had lower reported and measured PA in comparison to healthy peers. Lower PA was associated with reduced QOL amongst patients with ICCs. Themes identified in qualitative studies included activity restriction, fear of cardiac events, a need for improved communication by healthcare professionals, re-orientation, and coping. Conclusion: Children and young people with ICCs appear to have poorer QoL and engage in less PA than healthy peers. Empowering them to safely engage in PA should be a priority for healthcare providers. Consistent outcome measure across future studies would improve wider applicability of the findings.