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

Abstract

A BS TRACT: 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.

Transition Services for Children and Young Adults with Movement Disorders: A Survey by the MDS Task Force on Pediatrics

“…It is well recognized that transition is key to ensuring the safe and smooth transfer of patients from pediatric to adult services, particularly for complex movement disorders. 7 There is currently very little evidence to guide movement disorders practice when it comes to transition services. In the scoping review by MDS task force, 7 only two articles included patients with movement disorders.…”

“…7 There is currently very little evidence to guide movement disorders practice when it comes to transition services. In the scoping review by MDS task force, 7 only two articles included patients with movement disorders. 10,11 This survey provides important insights into the existing transition services, namely how these are provided across the world, highlighting some key service deficiencies.…”

“…3,4 Despite the guidance and recommendations available, there remains a paucity of evidence for successful transition models and services. [4][5][6][7][8][9] The Movement Disorders Society (MDS) Task Force on Pediatrics conducted a survey on existing practices with an aim to understand the current structure and role of transition clinics for childhood-onset movement disorders and to understand the models of transition care relevant to these.…”

“…information [3][4][5][6][7][8] and task force group discussions. The questionnaire, consisting of 16 questions (Appendix S1), was drafted, and included input from the subgroup of four child and two adult neurologists that undertook the scoping review.…”

“…The questionnaire, consisting of 16 questions (Appendix S1), was drafted, and included input from the subgroup of four child and two adult neurologists that undertook the scoping review. 7 The final questionnaire was subsequently approved by all members of the task force. Please refer to Appendix S2 for details of the survey and analysis.…”