International recommendations for child to adult care transition in rare neurological diseases: A scoping review and Delphi consensus study
Lucie Stovickova, Riccardo Ronco, Sylvia Boesch, Enrico Bertini, Mary Kearney, Lidia Sarro, Juan Darío Ortigoza‐Escobar, Sophie Ripp, Caterina Mariotti,Aim
To produce recommendations for specific neurological diseases, including ataxias, hereditary spastic paraplegias, leukodystrophies, dystonias, and choreas.
Method
Our study consisted of two related phases. First, we conducted a scoping review to identify essential elements of transitional care models. These elements were included in a questionnaire that was subsequently evaluated by an international group of experts using a modified web‐based Delphi consensus process. Results were analysed according to the RAND/UCLA methodology.
Results
Fifty‐nine statements of transitional care were evaluated by 47 health care specialists from 12 countries. Panellists were experts in ataxias ( n = 12), hereditary spastic paraplegias ( n = 10), leukodystrophies ( n = 9), choreas ( n = 7), and dystonias ( n = 9). Seventeen recommendations met consensus in all five disease categories.
Interpretation
Child‐to‐adult transition has been investigated in many fields of medicine; however, only few reports have considered rare neurological disorders. The transition working group of the European Reference Network for Rare Neurological Diseases has proposed a collaborative effort to produce recommendations for specific neurological diseases. The recommendations identified in our study reflect areas of shared priorities across multiple disease groups of rare neurological diseases and provide an essential level of guidance to support clinicians and families in promoting consistent transition projects of care across centres with different health care systems.