P.168 Improving transitioning from pediatric to adult care: a qualitative study of patients with hydrocephalus and their caregivers

Abstract

Background: Hydrocephalus is a common pediatric condition but many neurosurgeons cannot continue to care for patients into adulthood. Although gaps in care are thought to exist for youth transitioning to adult care, little is known about how patients/caregivers feel about the process. This study examined the perceptions of adolescents and young adults transitioning from pediatric to adult care at a single centre. Methods: We explored the perceptions of patients/caregivers with hydrocephalus about the transitioning process using semi-structured interviews and the qualitative research methodologies of grounded theory. 40 patient/caregivers (7 adolescents, 13 young adults, 20 parents) from BC Children’s Hospital and the Hydrocephalus Clinic at Vancouver General Hospital. Interviews were transcribed verbatim and coded, with common themes identified. Results: Four themes relating to transitioning from pediatric to adult care were identified: (1): Poor communiction; (2) Uncertainty relating to living life as an adult with hydrocephalus; (3) Anxiety and fear regarding navigating a new health care environment; (4) sadness in the loss of the relationship with the pediatric health care team. Conclusions: We identified a general dissatisfaction with the transitioning process for hydrocephalus. Common themes and concerns identified may form the basis of an improved transitioning model for youth with hydrocephalus as they become adults.