Show simple item record

dc.contributor.authorThibadeau, Judy
dc.contributor.authorReeder, Matthew R
dc.contributor.authorAndrews, Jennifer
dc.contributor.authorOng, Katherine
dc.contributor.authorFeldkamp, Marcia L
dc.contributor.authorRice, Sydney
dc.contributor.authorAlriksson-Schmidt, Ann
dc.date.accessioned2018-01-30T23:56:15Z
dc.date.available2018-01-30T23:56:15Z
dc.date.issued2017-09-14
dc.identifier.citationUnderstanding the Natural Progression of Spina Bifida: Prospective Study 2017, 6 (9):e180 JMIR Research Protocolsen
dc.identifier.issn1929-0748
dc.identifier.pmid28912114
dc.identifier.doi10.2196/resprot.7739
dc.identifier.urihttp://hdl.handle.net/10150/626441
dc.description.abstractBackground: 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.
dc.description.sponsorshipHealth Resources and Services Administration (HRSA) of the US Department of Health and Human Services [B04MC25374]; CDC [FOA-DD-10-004]en
dc.language.isoenen
dc.publisherJMIR PUBLICATIONS, INCen
dc.relation.urlhttp://www.researchprotocols.org/2017/9/e180/en
dc.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.en
dc.rights.urihttps://creativecommons.org/licenses/by/4.0/
dc.subjectspina bifidaen
dc.subjectnatural historyen
dc.subjectbirth defecten
dc.subjectdisabilityen
dc.subjectsurveillanceen
dc.subjectrecruitmenten
dc.titleUnderstanding the Natural Progression of Spina Bifida: Prospective Studyen
dc.typeArticleen
dc.contributor.departmentUniv Arizona, Dept Pediaten
dc.identifier.journalJMIR Research Protocolsen
dc.description.noteOpen access journalen
dc.description.collectioninformationThis 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.en
dc.eprint.versionFinal published versionen
refterms.dateFOA2018-06-23T13:06:37Z
html.description.abstractBackground: 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.


Files in this item

Thumbnail
Name:
fc-xsltGalley-7739-143802-34-PB.pdf
Size:
576.6Kb
Format:
PDF
Description:
Final Published Version

This item appears in the following Collection(s)

Show simple item record

© 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.
Except where otherwise noted, this item's license is described as © 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.