Abstract
BackgroundSpina bifida (SB) is monitored through birth defects surveillance across the United States and in most developed countries. Although much is known about the management of SB and its many comorbid conditions in affected individuals, there are few systematic, longitudinal studies on population-based cohorts of children or adults. The natural history of SB across the life course of persons with this condition is not well documented. Earlier identification of comorbidities and secondary conditions could allow for earlier intervention that might enhance the developmental trajectory for children with SB.ObjectiveThe purpose of this project was to assess the development, health, and condition progression by prospectively studying children who were born with SB in Arizona and Utah. In addition, the methodology used to collect the data would be evaluated and revised as appropriate.MethodsParents of children with SB aged 3-6 years were eligible to participate in the study, in English or Spanish. The actual recruitment process was closely documented. Data on medical history were collected from medical records; family functioning, child behaviors, self-care, mobility and functioning, and health and well-being from parent reports; and neuropsychological data from testing of the child.ResultsIn total, 152 individuals with SB were identified as eligible and their parents were contacted by site personnel for enrollment in the study. Of those, 45 (29.6%) declined to participate and 6 (3.9%) consented but did not follow through. Among 101 parents willing to participate, 81 (80.2%) completed the full protocol and 20 (19.8%) completed the partial protocol. Utah enrolled 72.3% (73/101) of participants, predominately non-Hispanic (60/73, 82%) and male (47/73, 64%). Arizona enrolled 56% (28/50) of participants they had permission to contact, predominately Hispanic (18/28, 64%) and male (16/28, 57%).ConclusionsWe observed variance by site for recruitment, due to differences in identification and ascertainment of eligible cases and the required institutional review board processes. Restriction in recruitment and the proportion of minorities likely impacted participation rates in Arizona more than Utah.
Highlights
Spina bifida (SB) is a neural tube defect that occurs in the first month after conception and involves a defect of variable severity in the developing spinal cord [1,2,3]
In Utah, recruitment letters were sent to all 92 parents of eligible children identified in the birth defects surveillance system
Of the 10 eligible children who were identified from the SB clinic but not born in Utah and who were invited by the SB clinic director, 7 participated in the full protocol, 1 in the partial protocol, and 2 did not respond
Summary
Spina bifida (SB) is a neural tube defect that occurs in the first month after conception and involves a defect of variable severity in the developing spinal cord [1,2,3]. SB is monitored through birth defects surveillance across the United States and in most developed countries. Spina bifida (SB) is monitored through birth defects surveillance across the United States and in most developed countries. Objective: The purpose of this project was to assess the development, health, and condition progression by prospectively studying children who were born with SB in Arizona and Utah. Methods: Parents of children with SB aged 3-6 years were eligible to participate in the study, in English or Spanish. Results: In total, 152 individuals with SB were identified as eligible and their parents were contacted by site personnel for enrollment in the study. Utah enrolled 72.3% (73/101) of participants, predominately non-Hispanic (60/73, 82%) and male (47/73, 64%). Arizona enrolled 56% (28/50) of participants they had permission to contact, predominately Hispanic (18/28, 64%) and male (16/28, 57%).
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