Authors :
Presenting Author: Tatiana Falcone, MD – Cleveland Clinic
Deepak Lachhwani, MD – Epilepsy – Cleveland Clinic; Katherine Csesznki, LISW – Epilepsy – Cleveland Clinic; Christina Deisz, LISW – Epilepsy – Cleveland Clinic; Rachel Lane, RN – Epilepsy – Cleveland Clinic; Kristel Tossone, PhD – Junction Psychological Services Corporation; Emily Wesely, Medical Student – Cleveland Clinic Lerner College of Medicine; Jane Timmons-Mitchell, PhD – Junction Psychological
Rationale:
As part of a HRSA grant to increase service access among epilepsy patients, transition from pediatric to adult providers is emphasized. Having created a Transition Clinic, we encountered barriers to enrollment. We explored the barriers by asking the caregivers and patients about their attitudes toward pediatric to adult health care transition (HCT).
Methods:
During the 2023 epilepsy surgery reunion, we conducted two focus groups: one with caregivers and one with patients. Groups were recruited from the participant lists for the epilepsy surgery reunion. Included were (1) caregivers of epilepsy patients 14 years of age or older, the age at which transition activities begin; and (2) epilepsy patients at least 18 years old.
After consent, two separate groups were conducted simultaneously by physicians from the Pediatric Epilepsy center. A script was prepared with standardized questions and procedures.
Two research coordinators recorded on iPhones with Zoom software. Two additional research assistants transcribed verbatim. The transcripts were prepared using AI technology for Zoom, checked against the verbatim transcripts.
Results:
The focus group for parents (N=5) resulted in the following themes:
Theme 1: Parents’ concerns about their child transitioning to an adult provider. Parents discussed multiple concerns about their children transitioning to an adult provider, including: (1) the ability to self-advocate and preparation to do so; (2) children did not know enough about their own care to make appointments or make sure tests were covered by insurance; (3) parents would not be allowed to be involved with their child’s care if their child moved to an adult provider.
Theme 2: Transitioning to College as an Important Factor in Transitioning to Adult Care. Parents said that going to college is an important part of transitioning care. Whether this was an intentional care transition or not. With increased independence in college, parents said they did not know what kind of care the child is receiving and if they are accessing appropriate care. Treatment pre-authorization for insurance is a concern.
The Patient Focus Group (N = 7) resulted in themes concerning the pandemic and the importance of self-confidence.
Theme 3: The Pandemic’s Impact on Receiving Care and Transitioning. Some patients discussed the pandemic’s impact on receiving care and transitioning to adult care, and that it was much easier once the pandemic happened.
Theme 4: Confidence is Key. Patients ascribed the importance of confidence to being able to interact with adult providers, including making appointments, finding a new provider, and self-advocating.
Conclusions:
Focus group results with caregivers and epilepsy patients suggest that both caregivers and patients have concerns about the transition process. Patients expressed that their needs are being met by their pediatric providers; the concern is about emphasis to transition. Psychoeducation and Motivational Interviewing techniques may aid in addressing this concern.
Funding: This study was funded by HRSA