Project: Creating a new clinical pathway for paediatric clients with anti-NMDA receptor encephalitis within a brain injury rehabilitation setting
Investigators:
- Ritu Puthen, NP
- Laura Hughson, CYW
- Breanne Mathers, CLS
- Ryan Hung, MD
- Gail Kirkwood, PT
- Peter Rumney, MD,
- Jenette Schoon, RN
- Elaine Widgett, OT
What was this project about?
We have seen an increasing number of children with anti-NMDA receptor encephalitis referred for neuro-rehabilitation services in the last five years.
These children present with unique impairments and challenges compared to children with other forms of acquired brain injury and their recovery are very individual.
In this project, we sought to understand the treatment profiles of children admitted to an inpatient brain injury rehabilitation setting.
- It was also our aim also to understand the perspectives of the clinicians providing rehabilitation care to these as well as the families’ perspectives on their lived experience through the current rehabilitation program.
What did we do?
A retrospective chart review was conducted of all consecutive patients admitted with anti-NMDA receptor encephalitis to the inpatient Brain Injury Rehabilitation Program at Holland Bloorview from 2009 to 2014 for a survey of our current state.
Secondarily, focus groups with Brain Injury Rehabilitation Program clinicians with prior experience working with this population were held.
Lastly, a focus group with parents of children who had completed the rehabilitation program following a diagnosis of anti-NMDA Receptor Encephalitis was conducted.
Impact for clients, families and clinical practice
This review will provide a foundation of knowledge to improve the effectiveness and quality of the rehabilitation process and services for clients with anti-NMDA receptor encephalitis, their families and the therapy team.
This has been a great opportunity to contribute to this area of service as current literature on the rehabilitation needs and journey following a diagnosis of anti-NMDA receptor encephalitis is very limited.
What did we learn?
The findings from the chart review and focus groups showed common theme areas and recommendations in the following five areas:
- Communication
- Behaviour management
- Safety and environment
- Rehabilitation readiness
- Discharge and LOA planning
Next steps?
- Interactive activities were completed at the clinician lunch and learn to gauge energy from the larger team in moving forward with a variety of specific recommendations.These responses will be collected to help prioritize further work and next steps.
- The ultimate goal of phase two of this project would be to structure an optimal care plan/clinical pathway for these children from acute care referral to rehabilitation and to community discharge.