Objective: Primary: To identify factors influencing the decision to provide acute pharmacological treatment for dystonia exacerbations in hospitalized pediatric patients. Secondary: To assess the alignment between families and clinicians regarding the timing and rationale for pharmacological interventions.

Background: Dystonia is a common neurological comorbidity in children with severe neurological impairment, and it often worsens in the context of pain, illness, or stress. Exacerbations frequently occur in hospitalized patients, leading to prolonged stays and complications. Despite treatment protocols,¹ uncertainty remains regarding when to administer PRN (pro re nata) medications for acute dystonia. This study explores how families and clinicians make these treatment decisions and their level of agreement.

Method: The study team includes multidisciplinary care providers (nursing, neurology, pediatrics) and two parent partners. We are recruiting patients with pre-existing dystonia experiencing acute exacerbations during hospitalization (defined as requiring PRN medications to reduce dystonia). The study involves family interviews (10-15 participants) to capture their decision-making perspectives, alongside clinician surveys for the clinical team who cared for the same patient, addressing the same questions.

Results: Preliminary data indicate that clinicians consider patient distress, diaphoresis, and tachycardia when deciding on PRN medications but also face uncertainty regarding how long to wait before administering the medication (current guidance is 15-30 minutes if supportive measures fail). Data from parent interviews are pending. At the congress, we will present our methods and early findings from the first 5-7 family/clinician interviews, integrating them into existing dystonia treatment frameworks, including the Dystonia Severity Action Plan (DSAP).^1,2

Conclusion: Families play a critical role in determining when to treat worsening dystonia. Understanding their perspectives will help clarify decision-making processes and improve alignment between families and clinical staff regarding PRN medication use.

References: 1. Vogt LM, Yang K, Tse G, et al. Recommendations for the Management of Initial and Refractory Pediatric Status Dystonicus. Mov Disord. 2024;39(9):1435-1445. doi:10.1002/mds.29794
2. Lumsden DE, Lundy C, Fairhurst C, Lin JP. Dystonia Severity Action Plan: a simple grading system for medical severity of status dystonicus and life-threatening dystonia. Dev Med Child Neurol. 2013;55(7):671-672. doi:10.1111/dmcn.12108

« Back to 2025 International Congress

MDS Abstracts - https://www.mdsabstracts.org/abstract/understanding-family-and-clinician-perspectives-on-treatment-decision-making-for-acute-dystonia-exacerbations-in-children/