August 27, 2023
COPENHAGEN, DENMARK — In a review published this year in the journal Movement Disorders Clinical Practice, members of the International Parkinson and Movement Disorder Society (MDS) Task Force on Pediatrics collaborated to generate recommendations about providing transitional care for patients with childhood-onset movement disorders.
Childhood-onset movement disorders are often diagnosed by specialized pediatric neurologists, who follow them over the years. However, as patients approach adulthood, a transition to adult clinics becomes necessary, presenting a challenging and intricate shift for both patients and healthcare providers.
The group comprised internationally diverse pediatric and adult neurologists to incorporate global perspectives. These experts completed multiple rounds of anonymized web-based surveys and subsequent discussions to reach consensus in a bias-limiting method known as the Delphi process.
“In a significant stride towards enhancing patient care, the authors have issued a comprehensive set of recommendations, aimed at facilitating the successful and seamless transition of young patients with movement disorders from pediatric to adult healthcare systems,” said Prof. Michele Matarazzo, Hospital HM Puerta Del Sur.
“These recommendations extend beyond conventional clinical management, such as reappraising the diagnosis and the continuity of the treatment, and encompass patient-centered measures, oriented at supporting them and their family in this complex phase of change,” Matarazzo said. “For example, some of the clearest focuses of the recommendations are represented by the multidisciplinary, the integration of patients and their family in the entire transitional process, and the progressive shift with a time of overlap between pediatric and adult clinics.
“Another key aspect of the recommendations is represented by the emotional support and the guide towards more autonomy that should be part of preparing the patient to an adult life with the disease.
“While their implementation might pose challenges in certain settings — as they require an infrastructure, time, professionals and financial resources, that might not be readily available everywhere — they still offer invaluable insights that can serve as incremental goals for achieving successful transitions.”
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About the 2023 MDS International Congress of Parkinson’s Disease and Movement Disorders®:
The MDS International Congress is the premiere annual event to advance the clinical and scientific discipline of Movement Disorders, including Parkinson’s disease. Convening thousands of leading clinicians, scientists and other health professionals from around the globe, the International Congress will introduce more than 1,800 scientific abstracts and provide a forum for education and collaboration on latest research findings and state-of-the-art treatment options.
About the International Parkinson and Movement Disorder Society:
The International Parkinson and Movement Disorder Society® (MDS), an international society of more than 11,000 clinicians, scientists, and other healthcare professionals, is dedicated to improving patient care through education and research. For more information about MDS, visit www.movementdisorders.org.