Multiple sclerosis (MS) is rare in children compared to adults. The management of pediatric onset MS (POMS) differs from adult disease, and the appraoch of pediatric neurologists and neurologists can also diverge in practice.We conducted a survey among pediatric neurologists and neurologists to identify the problems experienced in the transition period of POMS patients to adulthood, and to collect suggestions about a transitional clinic for these patients. Questionnaires were prepared by the Delphi method with a group of specialists and sent via e-mail to pediatric neurologists and neurologists through national associations. Statistical analysis was performed on the answers received. Participants included 31 pediatric neurologists (48.4%) and 33 neurologists (51.6%). The majority of pediatric neurologists (n=22, 71%) had been involved in central nervous system demyelinating diseases for 0-9 years. Among neurologists, the largest group 17 (n=17, 51.5%) was those who had been caring for these patients for 10-19 years. Pediatric neurologists were more interested in a transition procedure for POMS patients than adult neurologists: 26 (89.7%) vs.18 (56.3%) respectively (p=0.004). The preferred method for transferring the patient was face to face, realized more by pediatric neurologists (15/31) than neurologists (8/33) (p=0.044). Satisfaction with the transition process was not at the desired level in both groups of physicians. Transferring patients through a joint meeting and writing a detailed consultation note were frequent recommendations. Most contacted physicians were in favor of a national system for the transfer of POMS patients to neurology care, and suggested specialized transitional clinics. Applicable and agreeable procedures need to be implemented for both patients’ and physicians’ advantage.
Key words: Transition, pediatric, multiple sclerosis, adulthood, demyelinating
|
