Q&A with Shekeeb Mohammad, Simon Paget and Russell Dale

Abstract

Shekeeb Mohammad, Simon Paget and Russell Dale* in Sydney We would say that this is improving but still not well established, and there may be a lot of variability across the world. Certainly, training pathways in neuropediatrics do not include movement disorders as a primary subspecialty, as opposed to epilepsy and muscle disease. The improving recognition of childhood movement disorders has been fostered by the biannual Barcelona pediatric movement disorder meetings, which have been supported by the MDS. Under the leadership of Emilio Fernandez-Alvarez, over the last 20 years the international pediatric movement disorder community has grown into an exciting and collaborative enterprise. The early Barcelona meetings were predominantly focused on movement disorder phenomenology, but now the meeting is increasingly focused on discoveries about movement disorder causation and therapeutics including gene therapy and deep brain stimulation. This is again variable, and depends upon location and care settings. It may seem surprising to most adult movement disorder experts, but even DBS is not always considered in children with genetic causes of dystonia, even in countries with DBS availability. In many tertiary settings in resource-rich countries, neonatal screening programs detect some treatable neurometabolic disorders, but the early recognition of treatable conditions can be improved, and screening resources can be made more widely available. Furthermore, pragmatic guides may help to ensure that treatable conditions are not missed, such as incorporating a dopa trial in children with dystonia. Often, the life of children with movement disorders can be improved even when the disorders are not reversible (such as cerebral palsy) by applying the international classification of function framework as proposed by the World Health Organization, which includes managing pain and improving participation or function such as alternate ways of communication, hand use, or ambulation. Finally, as outlined in our review, in the busy clinic, too often we focus on motor or movement problems and fail to identify or treat impairing anxiety, inattention, or executive issues that are a higher priority to the patient and family. Integrating psychological and psychiatric management in neurology practice would be useful, as occurs in the Tourette syndrome multidisciplinary model. Many of our patients with childhood-onset movement disorders will grow up to become adults with movement disorders. The MDS is well placed to support this continuum of care and to help build global equity and sharing of knowledge. The MDS's support for pediatric groups such as the Barcelona meetings is a great model that can continue but also expand to other institutions and similar meetings. Ongoing allocation of some academic presentation time for childhood movement disorders at the MDS congress will foster interest, participation, and collaboration. The MDS can provide a platform for technology or web-based tools such as genomic or phenotypic data-sharing platforms, housing live or updated guidelines, and considering teaching resources focused on neuropediatrics. The genomic revolution that is providing answers to many child-onset dystonic syndromes is of great interest to all movement disorder specialists, as these discoveries provide insights into the brain pathways involved in the control of movement. The mix of fundamental research with clinical reports is very close to an ideal balance in Movement Disorders. It is exciting to watch the journal become more influential globally, with rising impact. Linking the journal closely to the MDS allows for the opportunity to create task forces to generate consensus guidelines using international experts that help the clinician, in the same way Epilepsia has worked with the international league against epilepsy. That Movement Disorders presents scientific discoveries yet also focuses on clinical phenomenology and clinical practice means the journal remains relevant to the pragmatic practicing clinician and is one of its strengths. Please note: The publisher is not responsible for the content or functionality of any supporting information supplied by the authors. Any queries (other than missing content) should be directed to the corresponding author for the article.