Transitional Care for Young People with Neurological Disorders: A Scoping Review with A Focus on Patients with Movement Disorders |
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| Authors: | Eavan McGovern MD Tamara Pringsheim MD Alex Medina MD Carlos Cosentino MD Ali Shalash MD Zomer Sardar FCPS Victor S.C. Fung PhD FRACP Manju A. Kurian PhD Emmanuel Roze MD MDS Task Force on Pediatrics |
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| Affiliation: | 1. Dublin Neurological Institute, Mater University Hospital, Dublin, Ireland;2. Department of Clinical Neurosciences, University of Calgary, Calgary, Alberta, Canada;3. Instituto Nacional de Ciencias Neurologicas, Lima, Peru;4. Department of Neurology, Faculty of Medicine, Ain Shams University, Cairo, Egypt;5. Department of Neurology, Mayo Hospital, Lahore, Pakistan;6. Movement Disorders Unit, Department of Neurology, Westmead Hospital & Sydney Medical School, University of Sydney, Sydney, New South Wales, Australia;7. UCL Institute of Child Health, London, United Kingdom;8. Department of Neurology, Salpêtrière Hospital, Sorbonne University and Assistance Publique - Hôpitaux de Paris, Paris, France |
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| Abstract: | Childhood-onset movement disorders represent a heterogenous group of conditions. Given the complexity of these disorders, the transition of care from pediatric to adult medicine is an important consideration. We performed a scoping review of the literature on transitional care in chronic neurological disease, exploring key transitional issues and proposed transitional care models. Our aim was to describe the current knowledge and gaps about the transition process of young adults with chronic neurological disorders, paying special attention to childhood onset movement disorders. A total of 64 articles were included in the qualitative synthesis; 56 articles reported on transitional care issues, and 8 articles reported on transitional care models. Only 2 articles included patients with movement disorders. The following 4 main transitional issues were identified following synthesis of the available literature: (1) inadequate preparation for the transition process, (2) inappropriate and inconsistent transition practices, (3) inadequate adult services, and (4) heightened emotional response surrounding transition. Of the reported transitional care models, multidisciplinary ambulatory care was the most common approach. In studies evaluating patient-related outcomes, positive health, educational, and vocational outcomes were found. The available literature provides insights on issues that can arise during transition that should be addressed to improve patient and caregiver comfort and satisfaction with care. Further research is needed to evaluate how transitional care programs affect outcomes and their cost effectiveness. More studies are required to determine the needs and outcomes specific to patients with childhood onset movement disorders. © 2020 International Parkinson and Movement Disorder Society |
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| Keywords: | transitional care neurological disorders pediatrics |
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