Promising Practice Summary: Epilepsy Transition Clinic | Children’s Hospital of Philadelphia

Overview

The Children's Hospital of Philadelphia (CHOP) has implemented a transition clinic specifically designed to aid epilepsy patients in transitioning from pediatric to adult care. This clinic was established in the spring of 2023 and is primarily led by social workers who conduct individualized psychosocial appointments with families. The goal is to provide education and guidance on the health care transition process, helping young adults and their families feel more prepared for the shift to adult health care services.

Project Background

Historically, CHOP did not have concrete guidelines for transitioning epilepsy patients to adult care, treating each case on a spectrum. However, recognizing the need for more structured support, the hospital initiated a transition clinic. This clinic was developed in response to feedback from families and adult care providers who noted gaps in the transition process. The clinic's mission is to begin transition discussions with patients during early adolescence and target the actual transition between ages 18 and 22.

Key aspects of the transition clinic include:

• Early Engagement: Discussions about transition begin during early adolescence to help build independence and advocacy skills.
• Structured Timeline: The target transition age range is between 18 and 22 years.
• Personalized Support: The clinic offers one-on-one psychosocial appointments to address the specific needs and concerns of each family.
  
  

Data/Outcomes

Since its inception, the transition clinic has shown promising results having completed 50 individual transition sessions and received 145 referrals. The program's effectiveness is monitored through surveys sent post-visit and six months after the transition. Initial survey responses indicate high satisfaction, with most respondents feeling adequately prepared for their first adult neurology appointment. 

Recommendations

For organizations looking to replicate this practice, several key steps are recommended:

• Leverage Existing Resources: Utilize well-established resources from organizations such as GotTransition.org and the Child Neurology Foundation to avoid reinventing the wheel.
• Individualized Support: Offer tailored support sessions that cater to both independent young adults and those with developmental or intellectual disabilities.
• Language Accessibility: Ensure non-English speaking families have access to interpreters and translated materials.
• Flexibility: Accommodate families who may not have access to video calls by offering telephone consultations and mailed resources.
  
  

Sustainability and Challenges

CHOP's transition clinic for epilepsy patients is a promising practice that addresses the critical need for structured support during the transition from pediatric to adult care. While the program has shown significant success, ongoing efforts to secure sustainable funding and continuously improve the program are essential for its long-term viability. The primary challenge faced by the transition clinic is sustainability, particularly regarding funding and time constraints. The clinic currently operates with limited social worker hours and is grant-funded, posing questions about long-term viability. To address this:

1. Billing for Services: Explore options to bill for transition visits through insurance, potentially by involving a billing provider like a nurse practitioner or physician during appointments.
2. Streamlined Documentation: Implement efficient documentation practices to maximize time spent with families.
3. Continuous Feedback: Regularly update the curriculum based on feedback from families and adult providers to ensure the program remains responsive to needs.