Article

Objective : 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 21 y 5 mo, SD 2 y), 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.
CI - (c) The Authors. Developmental Medicine & Child Neurology (c) 2011 Mac Keith
Press.

Langue : ANGLAIS