Severity of Illness, Functional Status, and HRQOL in Youth with Spina Bifida


  • Robin R. Leger PhD MS RN CCRP

    Assistant Professor, Corresponding author
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    • Robin R. Leger, PhD MS RN CARP, is an assistant professor in the Department of Orthopaedic Surgery, GCRC # RR06192, of the University of Connecticut Health Center in Farmington, CT. Questions or comments about this article may be directed to Robin Leger, UCONN Health Center MARB room 0411, Farmington, CT, 06030-3805


Knowledge regarding the health status, functional status, and health-related quality of life (HRQOL) of youths with spina bifida is important in promoting optimal health care and preventing secondary conditions. A descriptive study using a convenience sample of 60 youth (15- to 25-year olds) with spina bifida form the northeastern United States was conducted to examine the relationship among health status (severity of illness), functional status, and HRQOL. The findings indicated that 28% (n = 17) of the youths were healthy other than having spina bifida, 72% (I = 43) reported secondary health conditions, and 32% (n = 19) reported additional comorbid conditions. The sample reported a high level of functional status on the FIM; the mean was 16.8 (SD = 7.07, range = 90–126). Bowel and bladder incontinence, the inability to traverse stairs, and select memory deficits were identified as more frequent functional limitations. The youth reported a high level of HRQOL; mean was 200.8 (SD = 19.54, range = 155–232). A regression analysis was performed, with HRQOL entered as the criterion; the results were not statistically significant (r2 = .02, df = 2, 57, p = .57). The researcher concluded that youths with spina bifida reported a high level of satisfaction with HRQOL, are succeeding at college, participating in recreation, sport activities, and other aspects of young adult living, and yet they are experiencing a number of secondary health conditions that leave them with concerns for their future.