A National Survey describing Management Patterns for Pediatric Paroxysmal Sympathetic Hyperactivity (PSH)

Outcomes 1. Classify the common abortive and prophylactic medication choices to treat pediatric PSH.2. Recognize the variation in pharmacologic management between pediatric specialties for treating pediatric PSH. Key Message There are currently no studies that describe practice patterns among clinicians to manage pediatric paroxysmal sympathetic hyperactivity (PSH), frequently referred to as dysautonomia or “storming.” We performed a national survey with 295 respondents that showed significant heterogeneity in which specialties were primarily responsible in managing PSH, as well as significant variability in medication choices between specialties. Introduction Pediatric paroxysmal sympathetic hyperactivity (PSH), frequently referred to as dysautonomia and “storming,” is a common source of discomfort among children with severe neurological impairment. Despite more than 20 classes of medications being described in the literature to treat PSH, there are currently no studies that broadly describe utilization patterns among pediatric clinicians and recommendations rely on expert opinion. Research Objectives To describe current trends in pharmacologic management of PSH among pediatric physicians practicing in North America. Methods From March through August 2023, attending physicians were invited to complete a cross-sectional online survey conducted via Qualtrics. We explored medication preferences and examined which specialties were primarily responsible for managing PSH at their institution. Descriptive statistics were calculated; subgroup analyses were conducted using Chi-squared and Fisher's exact tests. Results Of 295 respondents, 33% were palliative care physicians, 23% were pediatric neurologists, 18% were complex care specialists, and 17% were physiatrists. The majority (76%) of respondents felt very/somewhat comfortable managing pediatric PSH. Subspecialties primarily responsible for managing inpatient PSH varied significantly: physiatry (32%), neurology (26%), critical care medicine (15%), palliative care (4%), and general pediatrics (3%). The most frequently used abortive medications were GABA-A agonists (e.g., lorazepam) (85.7%) and alpha-2 agonists (e.g., clonidine) (78.6%). The most used maintenance medications were alpha-2 agonists (89.6%) and gabapentinoids (88.6%). For both abortive (p< 0.01) and maintenance (p< 0.05) treatment, use of opioids, alpha-2 agonists, and dopamine agonists varied significantly when comparing palliative care, neurology, complex care, and physiatry. Conclusions Significant heterogeneity in pharmacologic management of pediatric PSH exists, especially across pediatric subspecialties. Future work comparing efficacy of PSH management strategies could be helpful in improving consistency of optimal management. Keywords Pharmacotherapeutics / PharmacopalliationScientific Research