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.

Transition of adult patients with pediatric orthostatic intolerance from child-centered care to adult-centered care

“…However, adult patients with childhood-onset OI may face difficulty adapting to adult medical care because of their immaturity, lack of independence, and lack of social experience. Lack of independence among patients has been reported in cases of transition in other chronic pediatric diseases (18)(19)(20)(21)(22), and this is also the case for patients with OI. To improve the prognosis of adult patients with prolonged OI symptoms, an approach toward healthcare transition that focuses primarily on patients' independence may be effective.…”

A qualitative study of transitioning patients with hydrocephalus from pediatric to adult care: fear of uncertainty, communication gaps, independence, and loss of relationships

“…These models are based on principles meant to guide clinicians with customizing transitional care, such as "The Six Core Elements," to assist patients with chronic conditions such as cystic fibrosis, congenital heart disease, type 1 diabetes, and rheumatic disease in their healthcare transition. 9,[15][16][17][18][19] Transition of adolescents with hydrocephalus, however, is often fragmented and disjointed, given the relative lack of attention and research in establishing appropriate guidelines and models for the condition. 3,4,19 This is particularly alarming, not only due to the prevalence of hydrocephalus among the pediatric population, but also because of the significant increase in morbidity and mortality associated with poorly handled transfers 14 and the potentially life-threatening consequences of shunt failure.…”

“…9,[15][16][17][18][19] Transition of adolescents with hydrocephalus, however, is often fragmented and disjointed, given the relative lack of attention and research in establishing appropriate guidelines and models for the condition. 3,4,19 This is particularly alarming, not only due to the prevalence of hydrocephalus among the pediatric population, but also because of the significant increase in morbidity and mortality associated with poorly handled transfers 14 and the potentially life-threatening consequences of shunt failure.…”

“…Our previous work has shown a near-universal dissatisfaction with the transitioning process among neurosurgeons in pediatric centers in Canada and a general desire to develop best practice models for adoption. 19 Inadequate planning of the transitioning process, lack of communication among healthcare professionals, and unclear expectations were common experiences shared by patients with hydrocephalus and their family members who had undergone the transition. 3 The purpose of this study is to gain a better understanding of the factors that challenge young adults with hydrocephalus as they transition from pediatric to adult care.…”