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Transitional Care for Young People with Movement Disorders: Consensus-Based Recommendations from the MDS Task Force
Tamara Pringsheim1, Amit Batla2, Ali Shalash3
1Department of Clinical Neurosciences Psychiatry, Pediatrics and Community Health Sciences, University of Calgary Calgary AB Canada.
Insights
The International Parkinson and Movement Disorders Society developed 15 recommendations for transitioning pediatric movement disorder patients to adult care. These guidelines address team structure, planning, care goals, and research to improve care coordination.
Area of Science:
- Neurology
- Pediatric Medicine
- Healthcare Management
Background:
- Childhood-onset movement disorders require specialized care transition.
- The International Parkinson and Movement Disorders Society (MDS) established a task force for pediatric movement disorders.
Purpose of the Study:
- To generate evidence-based recommendations for the transition of care from pediatric to adult health systems for patients with childhood-onset movement disorders.
Main Methods:
- A formal consensus development process was employed, utilizing a multi-round, web-based Delphi survey.
- The survey incorporated findings from a literature scoping review and a survey of MDS members' transition practices.
- The MDS Task Force on Pediatrics, comprising 23 global experts in movement disorders, served as voting members.
Main Results:
- Fifteen consensus-based recommendations were established across four key areas: team composition/structure, planning/readiness, goals of care, and administration/research.
- All recommendations achieved a median consensus score of 7 or greater, indicating strong agreement among experts.
Conclusions:
- The study provides crucial recommendations for transitional care in childhood-onset movement disorders.
- Challenges in implementation include health infrastructure, resource distribution, and practitioner availability.
- Further research is essential to evaluate the impact of transitional care programs on patient outcomes.
Background:
The International Parkinson and Movement Disorders Society (MDS) set up a working group on pediatric movement disorders (MDS Task Force on Pediatrics) to generate recommendations to guide the transition process from pediatrics to adult health care systems in patients with childhood-onset movement disorders.
Methods:
To develop recommendations for transitional care for childhood onset movement disorders, we used a formal consensus development process, using a multi-round, web-based Delphi survey. The Delphi survey was based on the results of the scoping review of the literature and the results of a survey of MDS members on transition practices. Through iterative discussions, we generated the recommendations included in the survey. The MDS Task Force on Pediatrics were the voting members for the Delphi survey. The task force members comprise 23 child and adult neurologists with expertise in the field of movement disorders and from all regions of the world.
Results:
Fifteen recommendations divided across four different areas were made pertaining to: (1) team composition and structure, (2) planning and readiness, (3) goals of care, and (4) administration and research. All recommendations achieved consensus with a median score of 7 or greater.
Conclusion:
Recommendations on providing transitional care for patients with childhood onset movement disorders are provided. Nevertheless several challenges remain in the implementation of these recommendations, related to health infrastructure and the distribution of health resources, and the availability of knowledgeable and interested practitioners. Research on the influence of transitional care programs on outcomes in childhood onset movement disorders is much needed.
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