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Cosmos Study

Spina Bifida Patients Are Living 15 Years Longer in 2022 Than in 2011

October 17, 2023
Dual-Team Study
Team A:Kersten Bartelt, RNNeil Sandberg
Team B:Blaine Franklin, PT, DPTJoe Deckert, PhD

Key Findings

  • The median age at death for patients diagnosed with spina bifida increased by 36.6% (from 41 to 56 years old) from 2011 to 2022. 
  • In 2022, 70.8% of patients diagnosed with spina bifida were 40 years old or older when they died, compared to 52.0% in 2014.   

Spina bifida is a spinal cord condition that occurs when the neural tube that forms the spinal cord and brain doesn’t close completely during fetal development.1 Severity of symptoms can vary, but patients may experience physical and learning disabilities as a result.1 Babies born with spina bifida may also develop hydrocephalus, a condition where the baby has extra fluid in or around the brain, which can lead to brain swelling and further complications.2 Advancements in anesthesia, aseptic surgical techniques, and approaches for improving neurologic complications have increased survival for patients with spina bifida.3 We sought to understand whether the median age at death in patients diagnosed with spina bifida has increased in recent years with these advancements. 

We studied 3,541 patients diagnosed with spina bifida and 4,952,734 patients without a spina bifida diagnosis who died between 2011 and 2022 to determine the median age at death for each population. We found that the median age at death for patients with spina bifida increased 36.6%, from 41 years of age in 2011 to 56 years of age in 2022, as seen in Figure 1. The median age at death for patients without spina bifida stayed consistent, with a median of 75 years in both 2011 and 2022. In 2011, patients with spina bifida were living 34 fewer years than those without spina bifida. In 2022, the difference dropped to 19 years. 

Figure 1
Median Age at Death for Patients with and Without Spina Bifida
Median Age at Death for Patients with and Without Spina Bifida
Figure 1. Median age at death for patients who died each year with and without spina bifida from 2011 to 2022.

We further stratified the age at death for patients with spina bifida each year to understand how the proportions of deaths in each decade of life have changed over time. In 2014, 52.0% of patients with spina bifida who died were 40 years of age or older. In 2022, that proportion increased to 70.8% of patients diagnosed with spina bifida who were at least 40 when they died. 

Figure 2
Proportion of Annual Deaths by Age for Patients with Spina Bifida
Proportion of Annual Deaths by Age for Patients with Spina Bifida
Figure 2. Proportion of deaths for patients with spina bifida in each age group by year of death from 2014 to 2022.

These data come from Cosmos, a HIPAA-defined Limited Data Set of more than 214 million patients from 218 Epic organizations including 1,235 hospitals and more than 26,800 clinics, serving patients in all 50 states and Lebanon. This study was completed by two teams that worked independently, each composed of a clinician and research scientists. The two teams came to similar conclusions. Graphics by Brian Olson.   

References

  1. CDC. What is Spina bifida? Centers for Disease Control and Prevention. https://www.cdc.gov/ncbddd/spinabifida/facts.html. Accessed August 18, 2023. 
  2. CDC. Spina bifida health issues and treatments. Centers for Disease Control and Prevention. https://www.cdc.gov/ncbddd/spinabifida/treatment.html. Accessed August 28, 2023. 
  3. Iskandar BJ, Finnell RH. Spina bifida. The New England Journal of Medicine, 2022:387(5), 444–450. https://doi.org/10.1056/nejmra2116032