Purpose

This study aimed to conduct a national survey of individuals with spina bifida (SB) and their care partners to assess COVID-19 vaccination behaviors and vaccine uptake.

Methods

A survey instrument was designed to assess current vaccination status, general perceptions towards vaccinations, and barriers to vaccination within the SB community. Surveys were administered to individuals with SB or their representing care partner. Chi-squared and independent-samples t-tests were used to analyze the relationship between vaccine uptake and demographics. Multivariable logistic regression modeling was used to test which predictors impacted the odds that a participant received a COVID vaccine.

Results

A total of 1,412 participants completed the questionnaire, and 1,145 participants reported their COVID-19 vaccine status. The most common reason for not getting vaccinated was a concern about vaccine safety and efficacy. Overall, healthcare professional recommendations played a significant (OR 2.77 p < 0.001) role in whether to get vaccinated.

Conclusion

About one in five individuals with SB have not received any COVID-19 vaccine. Actionable and modifiable factors were identified which may help increase vaccine uptake. Importantly, health providers play a critical role in COVID-19 vaccination messaging and should emphasize vaccine safety and efficacy.