The relationship among severity of illness, functional status, and health-related quality of life in youth with spina bifida

Youth with chronic health conditions and disability are at risk for developing secondary conditions and changes in functional status that may be prevented. As youth with spina bifida age out of pediatrics, they often have difficulty transferring their care to adult health care providers. Care may be fragmented with a loss of follow-up. Health care providers in adult care are often ill prepared and untrained in “historically” pediatric conditions. Knowledge regarding the health status, functional status, and health-related quality of life of youth with spina bifida is important in promoting optimal health.; A descriptive study with 60 youth (15–25 year olds) with spina bifida, from the Northeastern United States was conducted to examine the relationship among Health Status (severity of illness), Functional Status (Functional Independence Measure/FIM), and self-perceived Health-Related Quality of Life (HRQOL) (Parkin, et al., 1997). The researcher collaborated with the North East Myelodysplasia Association (nursing consortium), and state associations to invite youth to participate and surveyed them in their home, college, or community setting.; The findings indicated that 28% (n = 17) of the youth were primarily healthy, 72% (n = 43) reported having secondary health conditions and 32% (n = 19) reported having additional comorbid conditions. The sample of youth with spina bifida, reported a high level of functional status (FIM); the mean was 116.8 (SD = 7.07, range 90–126 of a possible range of 18–126). However, areas of bowel and bladder incontinence, the inability to traverse stairs, and select memory deficits were identified as areas of functional limitation. The youth reported a high level of Health-Related Quality of Life; the mean was 200.8 (SD = 19.54, range 155–232 of a possible range of 47 to 235). To explore the relationship among the variables, a regression analysis was performed, with HRQOL entered as the criterion variable and the results were not statistically significant (r2 = .02, df = 2, 57, p = .57). A correlation model of the main variables and ancillary data illustrate a number of statistically significant bivariate correlations, which can be utilized to develop future research in youth with chronic illness and disabilities.