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Patient and Caregiver Perspectives on the Transition From Pediatric to Adult Neurology Care: A Single-Site
Laura D Fonseca1, Meha Joshi2, Brooklynne Dilley2
1Department of Neurology, Dayton Children's Hospital, Dayton, Ohio.
Insights
Young epilepsy patients face significant social needs and barriers when transitioning to adult care. Developing tailored neurology transition programs is crucial for successful care.
Area of Science:
- Neurology
- Pediatric Healthcare
- Transition of Care
Background:
- Transitioning from pediatric to adult healthcare is complex for young epilepsy patients.
- Patients, caregivers, and physicians are key to successful transitions.
- Understanding social needs and perspectives is vital for this process.
Purpose of the Study:
- To explore the social needs of young persons with epilepsy.
- To understand their perspectives on transitioning to adult neurology care.
Main Methods:
- Qualitative survey study of epilepsy patients aged 18+.
- Utilized Health-Related Social Needs Screening Tool and Barriers to Transition survey.
- Data collected at a tertiary pediatric hospital in Ohio.
Main Results:
- 31 surveys completed; most patients were male, White/Caucasian, and not Hispanic/Latino.
- Common social needs included lack of physical activity, disabilities, and mental health diagnoses.
- Significant barriers to transition included lack of formal process, insurance issues, and fear; only 16.1% attempted transition, with 3 successful.
Conclusions:
- Findings highlight the need for structured neurology transition programs.
- Programs should address social needs and identified barriers.
- Tailored interventions can improve transition outcomes for young epilepsy patients.
Background:
Transition from pediatric to adult health care setting is a complex process with patients, caregivers and physicians playing a vital role in its success. Our aim was to understand the social needs of young persons with epilepsy and their perspectives on transitioning to adult neurology care.
Methods:
We conducted a qualitative survey study of young persons with epilepsy ≥18 years of age. Data were collected from September 21, 2022, to November 15, 2023, at a tertiary pediatric hospital in Ohio. The Health-Related Social Needs Screening Tool and a self-created Barriers to Transition survey, were distributed to patients or their primary caregiver to complete on behalf of the patient.
Results:
Thirty-one surveys were completed. The majority of the patients were male (51.6%), with a mean age of 22.1 years, White/Caucasian (74.2%) and not Hispanic/Latino (90.3%). The majority reported having 3 or more social needs (48.4%); the most common being lack of physical activity (83.9%), presence of disabilities (51.6%), and mental health diagnoses (45.2%). The Barriers to Transition survey revealed 35.5% of respondents did not have a transition of care discussion with the clinical team. Only 5 (16.1%) patients attempted to transition to adult care with 3 being successful. A thematic analysis revealed five themes related to barriers in transitioning to adult health care setting: lack of a formal transition process, consistency of specialized pediatric care, insurance, fear/worry, and perspectives of adult care. One facilitator to transitioning theme emerged: treatment plan approach.
Conclusions:
Current findings can help with designing neurology transition programs to meet the needs of this complex population.
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