Burden of Illness for Neural Tube Defects: Canadian Perspective

Gideon Koren, Floortje van Nooten, Randall Winnette, Paige Church, Radek Wasiak*, Parvaneh Yazdani-Brojeni, Min Hua Jen, Dimitra Lambrelli, Mark Jeddi and Marion Kissner

Burden of Illness for Neural Tube Defects: Canadian Perspective.

Inconsistent coding of NTDs adds to the challenge of tracking the incidence. US incidence rates for SB range from 3 to 6 cases per 10,000 live births. Infants with a NTD tend to have severe and life-long disabilities, and face the risk of psychosocial maladjustment.

Most are unable to function independently as adults, with common disabilities and medical problems including sight problems, dysfunction in the arms, epilepsy, bowel and bladder dysfunction. In addition to physical handicaps, SB causes significant neurocognitive and psychological morbidity in affected children as well as mental health burdens for their caregivers.

If the patient had a cognitive or other impairment that would interfere with them completing the study, a patient representative could complete the measures for him or her. It was preferable that the patient representative was not also participating in the study as a caregiver. Results of the QoL analysis demonstrated that individuals with SB are lower on the physical component score compared to the US population, but better on the mental component score. When comparing caregivers for those with and without presence of hydrocephalus

Our results demonstrate a substantial use of health care resources by individuals with SB and the need for assistance in accessing those resources due to mobility problems. Persons with SB sought care in all of the settings–beginning with frequent visits to the GP office, visits to specialists. Patients frequently used assistive devices such as wheelchairs, or orthopaedic shoes, and incontinence pads and urinary catheters were the most used items in the last year. 

Pediatr Neonatal Nurs Open J. 2015; 2(1): 26-36. doi: 10.17140/PNNOJ-2-106