University of Wisconsin–Madison Medical College of Wisconsin

Pediatrician Exposure to Neuromuscular Patients

Matthew Harmelink, MD; Erin Yale, MM

Published online ahead of print February 22, 2021.

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ABSTRACT

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.


Author Affiliations: Department of Neurology, Medical College of Wisconsin, Milwaukee, Wis (Harmelink, Yale); Neuroscience Center, Children’s Hospital of Wisconsin, Milwaukee, Wis (Yale).
Corresponding Author: Matthew Harmelink, MD, Department of Neurology, Children’s Hospital of Wisconsin, 9000 W Wisconsin, CCC Suite 540, Milwaukee, WI 53226, phone 920.254.2156; email mharmelink@mcw.edu; ORCID ID 0000-0001-7897-1251.
Funding/Support: Dr Harmelink reports grant research support from CureSMA and an unrestricted grant from Sarepta Pharmaceuticals to develop a training program for pediatricians on neuromuscular disease. He also receives clinic infrastructure grants from the Muscular Dystrophy Association and Parent Project Muscular Dystrophy.
Financial Disclosures: Dr Harmelink is a compensated member of the advisory boards for Sarepta Therapeutics, Biogen Inc, PTC Inc, and Avexis Inc, a consultant for Biogen Inc and Emerging Therapeutic Solutions, Inc.
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