Objective: To develop an electronic medical record (EMR) tool for documenting and tracking dystonia severity in pediatric inpatients. Our goal was to enable easy input and data visualization so that the primary care team can understand the patient trajectory and make clinical decisions.

Background: Dystonia is common in children with medical complexity and neurological impairment, often worsening with pain, illness, and emotion. Severe dystonia, termed status dystonicus (SD), can be life-threatening and lead to complications such as respiratory distress, rhabdomyolysis, and severe pain. Early detection and monitoring are critical for timely treatment. Despite developing a recommendations and a hospital guideline for SD management,¹ based on a previously proposed documentation,² we found that clinicians faced challenges in monitoring dystonia severity and identifying when to intervene. To improve care, we collaborated with bedside nurses and the clinical informatics team to create an electronic monitoring tool for dystonia severity.

Method: A multidisciplinary team, including neurologists, nurses, and health informatics specialists, worked together to determine the best approach for tracking and displaying dystonia measures in the EMR (Epic © at our local hospital). We conducted focus groups with nurses and observed hospital wards where dystonia patients were frequently admitted. We came up with a proposed workflow for EMR dystonia tracking (Fig 1).

Results: Nurses preferred to track dystonia severity metrics within their vital signs flowsheet, with a dropdown menu for ease of use (Fig 2). Key features included identifying patient state, dystonia triggers (pain, secretions, suctioning, constipation, environmental stimulation) and documenting both comfort and pharmacological interventions. Additional options were added for cases where dystonia prevented accurate blood pressure measurements (e.g., “too dystonic to obtain BP”). We developed a method to score dystonia severity based on vital signs and data entry (Fig 3).² We plan to aggregate these measures and other markers of dystonia into an easy-to-visualize summary sheet (Fig 4).

Conclusion: Next steps include validating the tool by comparing it to clinician assessments, family reports, and video analysis. We also aim to explore ways for parents to engage in monitoring through patient portal apps or paper charts entered into the EMR by nurses.

Fig 2: Nursing Data Entry.

Fig 3: Dystonia Severity Scoring.

Fig 4: Mock-up summary sheet to trend dystonia.

Fig 1: Proposed workflow.

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, King MD, Allen NM. Status dystonicus in childhood: Curr Opin Pediatr. 2017;29(6):674-682. doi:10.1097/MOP.0000000000000556

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MDS Abstracts - https://www.mdsabstracts.org/abstract/developing-an-electronic-medical-record-based-dystonia-tracking-tool-for-use-in-a-pediatric-hospital-setting/