Original Article
Health Outcomes among Youths and Adults with Spina Bifida

https://doi.org/10.1016/j.jpeds.2012.10.042Get rights and content

Objective

To describe the health and health-related quality of life (HR-QoL) outcomes of youths and young adults with spina bifida.

Study design

One global rating of self-rated health and 2 generic measures of HR-QoL were administered to a group of youths and young adults with spina bifida. HR-QoL was measured using the Health Utilities Index Mark 3 (HUI3) and the Assessment of Quality of Life version 1 (AQoL).

Results

Data was obtained from 40 youth (mean age 16.0 years) and 13 young adults (mean age 26.6 years). Most youth rated their overall health as either excellent or very good (65%) compared with fewer adults (23%) (P = .007). The mean HR-QoL scores for youths versus adults were 0.57 versus 0.36 (P = .03) for the HUI3 and 0.37 versus 0.25 for the AQoL (P = .09). HUI3 and AQoL scores were correlated with level of anatomic lesion (rho = 0.64 and rho = 0.42, respectively).

Conclusions

The HR-QoL of youths and young adults with spina bifida was low on measures that are aggregated using societal values (the HUI3 and AQoL). This is in contrast to their single global self-ratings of health, which were more favorable. These findings underscore the distinction between ratings of HR-QoL based on societal values versus the personal lived experiences of adults with childhood-onset disability.

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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    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.

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