Aim To advance understanding of the interrelationships of sex, level of lesion (LOL), self-management, community integration (employment, independent living), and quality of life (QOL) in young adults with myelomeningocele.
Method A multicenter convenience sample of 50 individuals with myelomeningocele, 18 to 25 years of age (mean age 21y 5mo, SD 2y), participated in a structured clinical interview on self-management (Adolescent Self-Management and Independence Scale II [AMIS II]) and completed a self-report questionnaire comprising standardized measures. QOL was assessed using the World Health Organization Quality of Life (WHOQOL)-BREF instrument. A chart review yielded clinical data.
Results Most participants were Caucasian (78%), female (56%: 28 females, 22 males), unemployed (58%), and in supervised living environments (74%). Eighty per cent had a history of hydrocephalus requiring shunt placement. A lumbar LOL was most frequently reported (64%), followed by a sacral LOL (22%), and thoracic LOL (7%). Males were more likely to report employment (p=0.008), but females had greater success in transitioning into independent living settings (p=0.015). LOL was a significant predictor of specific dimensions of self-management, employment, and QOL (p < 0.05). Mean scores on the AMIS II reflected deficits in condition management activities and tasks of everyday life. Limited QOL was also observed.
Interpretation The overall low rates of employment and independent living suggest that individuals with myelomeningocele are experiencing great difficulty in achieving these milestones of emerging adulthood, regardless of sex. Limited success in developing self-management skills and restricted QOL also highlight vulnerability in this population.