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    Understanding the Natural Progression of Spina Bifida: Prospective Study

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    fc-xsltGalley-7739-143802-34-PB.pdf
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    Author
    Thibadeau, Judy cc
    Reeder, Matthew R cc
    Andrews, Jennifer cc
    Ong, Katherine cc
    Feldkamp, Marcia L cc
    Rice, Sydney cc
    Alriksson-Schmidt, Ann cc
    Affiliation
    Univ Arizona, Dept Pediat
    Issue Date
    2017-09-14
    Keywords
    spina bifida
    natural history
    birth defect
    disability
    surveillance
    recruitment
    
    Metadata
    Show full item record
    Publisher
    JMIR PUBLICATIONS, INC
    Citation
    Understanding the Natural Progression of Spina Bifida: Prospective Study 2017, 6 (9):e180 JMIR Research Protocols
    Journal
    JMIR Research Protocols
    Rights
    ©Judy Thibadeau, Matthew R Reeder, Jennifer Andrews, Katherine Ong, Marcia L Feldkamp, Sydney Rice, Ann Alriksson-Schmidt. Originally published in JMIR Research Protocols (http://www.researchprotocols.org), 14.09.2017. This is an open-access article distributed under the terms of the Creative Commons Attribution License
    Collection Information
    This item from the UA Faculty Publications collection is made available by the University of Arizona with support from the University of Arizona Libraries. If you have questions, please contact us at repository@u.library.arizona.edu.
    Abstract
    Background: Spina 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. 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. In addition, the methodology used to collect the data would be evaluated and revised as appropriate. Methods: Parents 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. Results: In 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%). Conclusions: We 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.
    Note
    Open access journal
    ISSN
    1929-0748
    PubMed ID
    28912114
    DOI
    10.2196/resprot.7739
    Version
    Final published version
    Sponsors
    Health Resources and Services Administration (HRSA) of the US Department of Health and Human Services [B04MC25374]; CDC [FOA-DD-10-004]
    Additional Links
    http://www.researchprotocols.org/2017/9/e180/
    ae974a485f413a2113503eed53cd6c53
    10.2196/resprot.7739
    Scopus Count
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    UA Faculty Publications

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