Title
Transitional Care for Young People with Neurological Disorders: A Scoping Review with A Focus on Patients with Movement Disorders
Date Issued
01 June 2021
Access level
metadata only access
Resource Type
review
Author(s)
McGovern E.
Pringsheim T.
Medina A.
Shalash A.
Sardar Z.
Fung V.S.C.
Kurian M.A.
Roze E.
Publisher(s)
John Wiley and Sons Inc
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.
Start page
1316
End page
1324
Volume
36
Issue
6
Language
English
OCDE Knowledge area
Neurología clínica
Subjects
Scopus EID
2-s2.0-85096641480
PubMed ID
Source
Movement Disorders
ISSN of the container
08853185
Sponsor(s)
Eavan McGovern declares no relevant financial disclosures. Tamara Pringsheim receives salary support from the American Academy of Neurology and holds research grants from the Maternal Newborn Child and Youth Strategic Clinical Network, the Owerko Centre of Alberta Children's Hospital Research Institute, and the Canadian Institutes of Health Research. Alex Medina, Ali Shalash, and Zomer Sardar declare no relevant financial disclosures. Victor Fung receives a salary from New South Wales Health; has received unrestricted research grants from the Michael J Fox Foundation, Abbvie, and Merz; is on Advisory Boards and/or has received travel grants from Abbvie, Allergan, Cavion, Ipsen, Merz, Praxis, Seqirus, Stada, Teva, and UCB; and receives royalties from Health Press Ltd. Manju Kurian is an National Institute for Health Research Professor and recipient of the Sir Jules Thorn Award for Biomedical Research, with additional research funding from the RoseTrees Trust and Great Ormond Street Hospital Children's Charity. Emmanuel Roze served on scientific advisory boards for Orkyn, Aguettant, Merz‐Pharma; received honoraria for speeches from Orkyn, Aguettant, Merz‐Pharma, Everpharma, and International Parkinson and Movement disorders Society; received research support from Merz‐Pharma, Orkyn, Aguettant, Elivie, Ipsen, Everpharma, Fondation Desmarest, AMADYS, Fonds de Dotation Brou de Laurière, and Agence Nationale de la Recherche; received travel grants from Vitalair, PEPS development, Aguettant, Merz‐Pharma, Ipsen, Merck, Orkyn, Elivie, Adelia Medical, Dystonia Medical Research Foundation, International Parkinson and Movement Disorders Society, European Academy of Neurology, and International Association of Parkinsonism and Related Disorders
Sources of information:
Directorio de Producción Científica
Scopus