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Severity of illness, functional status, and health-related quality of life in youth with spina bifida


As youth with spina bifida age out of pediatrics, they have difficulty transferring care to adult providers. Care is fragmented with a loss of follow-up. Clinicians in adult health care are untrained in historically, pediatric conditions. Understanding health status, functional status, and health-related quality of life [1]in spina bifida is important in a life-span approach to care.


A descriptive study of 60, 15–25 year olds with spina bifida, from the Northeastern USA examined for Health Status, Functional Status, and self-perceived HRQOL.


Results indicate and describe that 28% of youth were primarily healthy, 72% reported secondary health conditions and 32% reported co-morbidity. Functional status (FIM) was high with a mean of 116.8 (SD = 7.07, range 90–126) however, areas of bowel and bladder incontinence, inability to traverse stairs, and memory deficits were limitations. Youth reported high HRQOL; mean = 200.8 (SD = 19.54, range of 155 – 232). A regression analysis with HRQOL entered as the criterion variable results were not statistically significant (r2 = .02, df = 2, 57, p = .57). Main and ancillary variables show statistically significant correlations important for future research.


This study identifies that youth with spina bifida report a high level of HRQOL, participate in recreation, sport activities, college, adult living, and yet, experience secondary health conditions that leave them with concerns for their future.


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Open Access This article is published under license to BioMed Central Ltd. This is an Open Access article is distributed under the terms of the Creative Commons Attribution 2.0 International License (, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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Leger, R.R. Severity of illness, functional status, and health-related quality of life in youth with spina bifida. Scoliosis 4 (Suppl 1), O66 (2009).

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