Original ArticleHealth Outcomes among Youths and Adults with Spina Bifida
Section snippets
Methods
Participants in this study were recruited as part of a larger descriptive study that was representative of the graduates from children's rehabilitation centers in the province of Ontario, Canada. The study was approved by the Research Ethics Boards at the lead institutions and the participating rehabilitation centers. Participants in the larger study included youths (13.0-17.9 years of age) and young adults (23.0-32.9 years of age) who had either acquired brain injury, cerebral palsy (CP), or
Results
A group of 210 youths and 145 young adults with spina bifida were identified from 6 CTCs in Ontario. Address information was not available for 63 of the 355 members of the target population. Thus, information packages were sent out to 292 potential participants and 116 responded (39.7% response rate). Of these 116 respondents, 61 (52.6%) consented to participate. Questionnaire packages were sent to all of these followed by reminder postcards as well as phone follow-up when questionnaires were
Discussion
The previous literature describes average HR-QoL scores predominantly based on data from youths. The 3 papers that present the most detail on HR-QoL were those led by Verhoef,9 Buffart,10 and Sawin8 who presented mean HR-QoL scores of 0.46, 0.86, and 0.75, respectively, when rescaled to a 0-1 score. Our results and those of others9, 29 have demonstrated the importance of lesion level in determining HR-QoL scores. Detailed mean scores by lesion level were not presented in previous papers. This
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Spina Bifida
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Supported by a grant from the Canadian Institutes of Health Research. N.Y.'s faculty position has been supported by a Canada Research Chair from Canadian Institutes of Health Research. The authors declare no conflicts of interest.