To inform its work, the AAP surveyed 17 of its’ medical subspecialty and surgical specialty sections. The results were groundbreaking for many subspecialties, and even today, the data generated because of those surveys remains some of the only existing data regarding subspecialty workforce issues. A questionnaire was mailed to the members of the Section on Neurology (SONu), in addition to US physicians who were members of the Child Neurology Society (CNS), generating a sample size of approximately 900.
Though this survey was conducted over 10 years ago, the following key findings continue to be relevant:
• Epilepsy was the most common diagnosis among pediatric neurologists’ patients, representing approximately one-third of their total pediatric patient panel.
• Eight out of ten pediatric neurologists said they had a special area of expertise within the field, with the most common area of special expertise being epilepsy.
• Two-thirds of those with special expertise in epilepsy said they acquired such expertise through experience.
• Among those pediatric neurologists who experienced a change in the volume or complexity of pediatric referrals, approximately 70% had seen an increase in the volume of referrals and just over one half had seen an increase in the complexity of referrals.
• Almost one half of pediatric neurologists anticipated their communities would need additional pediatric subspecialists in the next 3-5 years.
• Even in areas or states where there are enough pediatric neurologists for the need, access may still be an issue since for nearly one half of pediatric neurologists, their main practice setting was at a medical school and the primary practice site for three fourths of pediatric neurologists was in an urban area.
• Over 90% of pediatric neurologists received referrals for pediatric patients from pediatric generalists and family physicians.
• Over 80% received referrals from pediatric medical/surgical subspecialists.
• Approximately 60-70% received referrals from urgent care centers, community agencies, and school districts.
The FOPE II Project highlighted that in most urban and suburban settings, pediatric subspecialists care for the majority of CYE with complicated and advanced disease. Because there are few pediatric subspecialists in rural settings, clinical services for patients in these areas are usually provided by periodic outreach clinics, telephone and telemedicine consultation, or referral to local adult subspecialists.
Many CYE live in rural and underserved areas and are affected by the social determinants of health. Their care is further complicated by35.
• National shortage of pediatric neurologists
• Primary care workforce lacking the requisite knowledge base and skill set to effectively diagnose and treat epilepsy
• Lack of access to high-quality coordinated care provided by a medical home or pediatric neurologists