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

Area of Science:

• Medical Genetics
• Pediatric Healthcare
• Transition of Care

Background:

• Previous research focused on healthcare providers' roles in transitioning pediatric patients with neurodevelopmental conditions (NDCs).
• The specific perspective and involvement of genetic counselors (GCs) in this transition process remained under-explored.

Purpose of the Study:

• To investigate the current practices, attitudes, and perceived barriers of genetic counselors (GCs) concerning the medical transition of pediatric patients with NDCs.
• To assess GCs' interest and confidence in managing the transition of care for individuals with NDCs.

Main Methods:

• A cross-sectional online survey was administered to 51 genetic counselors (GCs) actively seeing patients with NDCs.
• Survey questions covered demographics, current practices with pediatric vs. young adult patients, self-confidence, attitudes, and barriers related to the transition process.

Main Results:

• A significant majority of GCs (76.7%) expressed interest in participating in the transition process.
• All surveyed GCs considered transition planning for pediatric genetic patients with NDCs to be important.
• Most GCs (70.0%) reported discussing transition topics with patients aged 16-22 years.

Conclusions:

• Genetic counselors show a strong interest in supporting patients and families through the transition from pediatric to adult care.
• Incorporating genetic counseling expertise into transition planning for patients with NDCs can potentially improve care outcomes.
• This integration may help meet the evolving standards of care recommended by organizations like the American Academy of Pediatrics.