TOPLINE:

Life expectancy varied greatly on the basis of impairments in motor function, feeding ability, and continence in patients with open spina bifida, with fewer years for those with the most severe impairments, a new cohort study showed.

METHODOLOGY:

• A cohort study used data from more than 1600 patients with open spina bifida (age, 0 to > 50 years; mean age, 13 years; 50% men) who were followed for a mean of 13 years between 1986 and 2019.
• Patients were classified on the basis of ambulatory ability: cannot walk (62%), walks with support (22%), or walks independently (16%). Status of bowel or bladder control was also assessed.
• Survival analyses were performed, and empirical mortality rates and associated life expectancies were calculated.
• Age, sex, calendar year, ambulation, feeding ability, and continence were considered in the assessment model.

TAKEAWAY:

• Mortality rates varied greatly by age, ambulatory ability, and feeding ability. Patients who could not walk alone or with support had 2-4 times higher mortality rates than those who could walk, with rates increasing 6-10 times at the age of 60 years or older compared to age 5-9 years.
• Patients who could not walk or self-feed had a higher risk for mortality than those who walked well independently (odds ratio [OR], 7.1; P < .001), and patients with no bowel or bladder control had a higher mortality risk than those with some control (OR, 1.5; P = .002).
• At the age of 5 years, life expectancy was 56 years in patients who could walk vs 35 years for those who could not. At the age of 10 years, life expectancy was 57 years for boys and 58 years for girls who could walk with support and had some continence compared with 65 years and 70 years, respectively, in the general population.
• Survival rates improved from 1986 to 2019. In fact, the mortality rate decreased by approximately 1% per calendar year over the study period (OR, 0.99; P = .03).

IN PRACTICE:

“This is the first long-term study of patients with open spina bifida to report life expectancies by age, sex, and severity of impairment,” the investigators wrote.

The findings may “aid patients and caregivers alike in the proper planning for and treatment of those living with spina bifida,” they added.

SOURCE:

The study was led by Robert M. Shavelle, PhD, Life Expectancy Project, San Francisco. It was published online on February 11 in Developmental Medicine & Child Neurology.

LIMITATIONS:

There was significant missing data for variables related to the spinal region and hydrocephalus. Results were applicable only to individuals aged 5 years or older requiring ongoing services or therapy. Additionally, the life expectancy calculations assumed stability in motor function and continence with age.

DISCLOSURES:

No funding information was provided for the study. The investigators did not report any relevant conflicts of interest.

This article was created using several editorial tools, including AI, as part of the process. Human editors reviewed this content before publication.