Burden of Illness for Neural Tube Defects: Canadian Perspective

Abstract

Background: Neural Tube Defects (NTDs) are serious birth defects of which Spina Bifida (SB)
is the most common. This paper aims to provide an estimate of the burden of illness for patients
with SB and their caregivers in Canada, to assess the benefit of primary prevention.
Methods: Individuals with NTDs were recruited through a hospital in Toronto. Using the clinic’s
database, individuals with SB and caregivers were screened to confirm eligibility. Data
were collected using three types of questionnaires: sociodemographic, resource use and Quality
of Life (QoL).
Results: Of 310 questionnaires sent, 66 individuals with SB and 66 caregivers responded. Most
individuals with SB had a lesion in the lumbar area. More than half had presence of hydrocephalus.
In the past 10 years, hospitalisation was the most used health care resource and most
visited a urologist in the previous year. Caregivers reported various health conditions resulting
from their role as carer. QoL scores were standardised using a United States general population.
Results demonstrated that individuals with SB are lower on the physical component score but
better on the mental component score.
Conclusions: The burden associated with individuals with SB in Canada is considerable. Our
study highlights the need for primary prevention.