Establishing a Research Agenda for Spina Bifida
Maryellen S. Kelly, DNP, CPNP, MHSc1, Dawne Widener-Burrows, MA2, John S. Wiener, MD1, Judy Thibadeau, MN, RN3.
1Duke University, Durham, NC, USA, 2Widener-Burrows Inc, Lanham, MD, USA, 3Spina Bifida Assocation, Arlington, VA, USA.
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) which included an extensive literature review and expert review panels. These Guidelines identified over 250 research gaps for the care of individuals with SB. The community of people living with SB was engaged to prioritize these research gaps to create a formal research agenda that could be supported by the SBA.
Methods: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 using a 4-point Likert-scale ranking. The survey was pre-tested among a group of caregivers and adults with SB for face validity and revised. Survey was sent via SBA’s database to English and Spanish literate individuals. 1607 qualified 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 members of the parent, adult and clinical community to join its initial Research Advisory Council (RAC). Members of the RAC self-selected into the prioritized topic groups. Each group generated a list of their top research/clinical questions to address the research gaps in these highest ranked impact areas. Discussion groups were led by the SBA for each topic area to provide ranking of the proposed questions in order of importance to the SB community. Additionally, 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 top four to six ranked questions in each of the 6 topic areas.
Results:The RAC was inaugurated with MD, PhDs, nurses, adults with SB, and parents of individuals with SB. 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 (#1) and urinary incontinence (#2). Among adults with SB, additional top ranked topics were finding providers who treat adults with SB, managing weight/nutrition, and depression/mental health. Additional top topics for caregivers were independence/ability for self-care, and learning disabilities/attention disorders for all ages and finding doctors and managing weight for parents of adults with SB.
Conclusion:A Research Agenda for SB was rigorously created to prioritize topic areas of highest impact as ranked by individuals in the SB community in order 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.
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