Exploring genetic counselors' interest and role in transitional care discussions for pediatric patients with neurodevelopmental conditions

Abstract

Previous studies have examined the perspectives of healthcare providers regarding their role in the transition process of pediatric patients with neurodevelopmental conditions (NDCs), but the perspective of a genetic counselor has yet to be considered. This study explored genetic counselors' current practices and attitudes regarding care for pediatric patients with NDCs as they transition into adult care. Genetic counselors (GCs) currently seeing patients with NDCs were recruited through a cross-sectional online survey. Questions included demographics, current practices with patients aged 0–15 years vs. patients 16–22 years, self-confidence, attitudes, and barriers regarding a genetic counselor's role in medical transition. A total of 51 surveys were included in the analysis. The majority (76.7%) of GCs were interested in playing a role in the transition process. Furthermore, all participants perceived transition planning for pediatric genetic patients with NDCs as somewhat important or important. Most GCs (70.0%) discussed topics of transition with patients over 18 years of age. These results demonstrate GCs' interest in assisting patients and families with the transition of individuals. Incorporating a genetic counselor skill set into transition discussions with patients with NDCs could improve the transition process and help to meet the standards of care called for by the American Academy of Pediatrics.