Transitional Care for Young People with Neurological Disorders: A Scoping Review with A Focus on Patients with Movement Disorders

Title

Transitional Care for Young People with Neurological Disorders: A Scoping Review with A Focus on Patients with Movement Disorders

Creator

McGovern E; Pringsheim T; Medina A; Cosentino C; Shalash A; Sardar Z; Fung VSC; Kurian MA; Roze E

Identifier

Publisher

Movement Disorders

Date

2020

Subject

pediatrics; neurological disorders; transitional care

Description

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.

Rights

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Citation List Month

January 2021 List

Collection

Citation

McGovern E; Pringsheim T; Medina A; Cosentino C; Shalash A; Sardar Z; Fung VSC; Kurian MA; Roze E, “Transitional Care for Young People with Neurological Disorders: A Scoping Review with A Focus on Patients with Movement Disorders,” Pediatric Palliative Care Library, accessed March 29, 2024, https://pedpalascnetlibrary.omeka.net/items/show/17318.