COVID-19 vaccination in individuals with spina bifida: A national survey.

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.

Establishing the first community-centered Spina Bifida research agenda.

INTRODUCTION: Spina bifida (SB) is the most common permanently disabling congenital defect. In 2016, the Spina Bifida Association (SBA) began updating the Guidelines for the Care of People with Spina Bifida (Guidelines). These Guidelines identified over 250 research gaps for the care of individuals with SB. The community of people living with SB prioritized these research gaps to create a formal research agenda that the SBA could support. OBJECTIVE: To present the process and the final research agenda created by individuals with SB, their care partners, clinicians, and researchers. DESIGN: A quantitative survey was developed to allow adults with SB and caregivers of those with SB to rank the impact of each of the 27 topical areas of the Guidelines. The survey was sent via SBA's database to English and Spanish-literate individuals. 1607 responses were captured and analyzed. Two focus groups were convened after survey analysis: adults with SB and caregivers of children with SB. Discussion outlines for the focus groups were developed based on the results from the survey and were used for known-group validation of the highest-ranked topics. The SBA then solicited caregivers of those with SB, adults with SB, and clinical communities to join its initial Research Advisory Council (RAC). Each group generated a list of top research questions to address the gaps in these highest-ranked impact areas. The SBA led discussion groups for each topic area to rank the proposed questions in order of importance to the SB community. They provided content validity and revisions to the language to improve interpretation by the SB community. The final SB Research Agenda was created from the final four to six ranked questions in each of the six topics. RESULTS: A ranking of findings from the quantitative survey identified the two most common topics impacting adults with SB and caregivers of both children and adults with SB were bowel incontinence and urinary incontinence. CONCLUSION: A Research Agenda for SB was rigorously created to prioritize topic areas of highest impact as ranked by individuals in the SB community to fill the research gaps identified in the Guidelines. Bowel and urinary incontinence, both often treated by urologists, were ranked at the top. This agenda will be used to prioritize research efforts to improve the health of those with SB.

Scientific methodology of the development of the Guidelines for the Care of People with Spina Bifida: An initiative of the Spina Bifida Association.

BACKGROUND: We combined literature review and consensus-building methodologies to develop health care guidelines for people with Spina Bifida across the life span. OBJECTIVE: The present paper describes the methodology used to update and expand this fourth edition of the Guidelines for the Care of People with Spina Bifida ("Guidelines"). This process was a fundamental initiative within the Spina Bifida Collaborative Care Network. METHODS: Working groups were formed consisting of international, multidisciplinary teams of clinical and research experts. A systematic review of multiple databases was conducted. The consensus building methodology, One-Text Procedure, was followed to draft and revise documents. Each section of the Guidelines was presented by working group chairs at a face-to-face meeting using the Nominal Group Technique (NGT). RESULTS: The Level 1 review resulted in 2449 abstracts being reviewed, and the Level 2 review resulted in 874 full text articles being archived for working groups. After working groups added and eliminated articles, a total of 803 manuscripts were included in the bibliography of the Guidelines. The final version of the Guidelines was then released in 2018. CONCLUSIONS: Evidenced based-research and consensus methodologies were used to develop the fourth edition of the Guidelines. It is hoped that this document will guide not only health care providers, but also patients and families, so that people with Spina Bifida can have the best and most scientifically-based care and treatments throughout ever-longer and higher-quality lives.

Survey of U.S. adults with spina bifida.

BACKGROUND: Spina Bifida (SB) is one of the most common birth defects and causes of permanent disability in the United States (US), with approximately 3.5 cases per 10,000 live births. OBJECTIVE: To identify complications associated with SB related to skin breakdown, pain, and urinary tract infections (UTIs), and to examine socio-demographic differences related to these complications. METHODS: Exploratory cross-sectional study via online of a national US convenience sample of adults with SB. RESULTS: We collected 1485 survey responses, of which 852 had complete, useable data. Skin breakdown in one or more locations during the past year was reported by 43.1%. After controlling for socio-demographic characteristics, only mobility variables remained significant predictors of skin breakdown (assistive device use OR = 3.119, 95% CI: 1.749, 5.564; using a wheelchair OR = 6.336, 95% CI: 3.442, 11.662). Pain in past seven days was reported by 46.9%. Single respondents (OR = 0.621; 95% CI: 0.419, 0.921) and those with at least a Bachelor's degree (vs high school degree or less, OR = 0.468; 95% CI: 0.283, 0.774) were less likely, and those using assistive devices were significantly more likely (OR = 1.960; 95% CI: 1.163, 3.303), to report pain. About one-third (32.7%) reported having a UTI within the past 12 months. Notably, almost half (49.6%) of respondents did not answer this question. The presence of UTIs was not significantly related to any socio-demographic characteristics assessed. CONCLUSIONS: Adults with SB in the US live with a wide range of complications which are potentially under-monitored, with predictors of complications that require further research.

Adding folic acid to corn Masa flour: Partnering to improve pregnancy outcomes and reduce health disparities.

Although strides have been made in preventing neural tube defects (NTDs), Hispanic women remain more likely to have a baby born with an NTD and less likely to know the benefits of, or consume, folic acid than women of other race/ethnic groups. In 1998, the U.S. Food and Drug Administration (FDA) mandated that all enriched cereal grain products be fortified with folic acid; however, corn masa flour (CMF), used to make many corn products that are a diet staple of many Hispanic groups, was not included under this regulation. In 2006, a Working Group began a collaboration to address this disparity by pursuing a petition to FDA to allow folic acid to be added voluntarily to CMF. The petition process was a monumental effort that required collaboration and commitment by partners representing the affected population, manufacturers, scientists, and others. The petition was approved in 2016 and folic acid is now added to CMF products, with expected results of more women achieving the recommended daily folic acid intake, more infants born per year without an NTD, and millions of dollars in direct medical expenditures averted. This 10-year public-private partnership brought together diverse groups that traditionally have different goals. The Working Group continues to work toward ensuring that fortified CMF products are available to the consumer, with the end goal of achieving a reduction in NTD-affected pregnancies.

Evaluation of spina bifida transitional care practices in the United States.

PURPOSE: Recent studies have revealed that the lack of continuity in preparing patients with spina bifida to transition into adult-centered care may have detrimental health consequences. We sought to describe current practices of transitional care services offered at spina bifida clinics in the US. METHODS: Survey design followed the validated transitional care survey by the National Cystic Fibrosis center. Survey was amended for spina bifida. Face validity was completed. Survey was distributed to registered clinics via the Spina Bifida Association. Results were analyzed via descriptive means. RESULTS: Total of 34 clinics responded. Over 90 characteristics were analyzed per clinic. The concept of transition is discussed with most patients. Most clinics discuss mobility, bowel and bladder management, weight, and education plans consistently. Most do not routinely evaluate their process or discuss insurance coverage changes with patients. Only 30% communicate with the adult providers. Sexuality, pregnancy and reproductive issues are not readily discussed in most clinics. Overall clinics self-rate themselves as a 5/10 in their ability to provide services for their patients during transition. CONCLUSIONS: Characteristics of current transitional care services and formal transitional care programs at US clinics show wide variances in what is offered to patients and families.