Transitioning in hydrocephalus: Current practices in Canadian Paediatric Neurosurgery centres.

ABSTRACT

INTRODUCTION: Advances in perinatal care in the developed world have resulted in more children living into adulthood with complex chronic health conditions. Transition is a process to improve and maximize the functional status of adolescents via the provision of adequate and appropriate health services in adulthood. This process is frequently disjointed, fragmented and inconsistent and inadequate transition increases morbidity, hospital admissions and urgent interventions. Ten thousand children are diagnosed with hydrocephalus annually in North America. Most survive to adulthood yet there are few transitioning programs and little research data on successful programs for this population. METHODS: An email survey of paediatric neurosurgical centres in Canada was carried out to establish current transition practices and attitudes for adolescents with hydrocephalus. Data were analyzed descriptively. RESULTS: Eleven out of 12 centres responded. The age of transition ranged from 16 to 18 years. Four centres have access to a dedicated Adult Hydrocephalus Clinic. Referral practices vary between centres and we highlight inconsistencies in care to this cohort of patients in Canada. There is little satisfaction among neurosurgeons with current transition arrangements in Canada. Several suggestions were made on how to improve this process. CONCLUSION: We recommend research into the needs of patients with hydrocephalus in order to formalize appropriate standards for transitioning patients with a view to developing national guidelines to standardize the transition process. This will require input from patients, families and the wider medical and allied health professional groups.