Matthew Harmelink, MD; Erin Yale, MM
Background: Primary care providers (PCPs) provide general care to patients, including those who are followed by specialists. In the field of rare diseases, there is growing research that the primary care needs of these patients are unique to their individual disease state. The purpose of this study is to determine the prevalence of patients with pediatric neuromuscular diseases among a subset of pediatric practices in Southeastern Wisconsin.
Methods: A retrospective review of all patients with neuromuscular diseases seen at Children’s Hospital of Wisconsin (CW) was conducted from January 1, 2016 through September 30, 2018. All patients who were seen by Children’s Medical Group (CMG) providers were included, with a division of patients by provider.
Results: Eight hundred eleven (811) unique pediatric neuromuscular patients were identified; 188 patients were included in the study cohort. The median number of patients per provider was 2.5, mean number of patients was 2.68, and mode number of patients was 1.74; 51% of pediatricians within CMG did not care for a pediatric neuromuscular patient.
Discussion: The prevalence of patients with neuromuscular diseases followed by an individual CMG provider is low, with over half of the CMG providers not caring for any patients with neuromuscular diseases. Given the specific primary care knowledge needed to care for these patients, this suggests the need for a novel method of help support these providers.