Functional independence among young adults with spina bifida, in relation to hydrocephalus and level of lesion

Abstract

Knowledge about the level of functional independence that can be expected in adulthood might support decisions on the treatment of newborn infants with spina bifida. This study determined functional independence among young adults with spina bifida and its relationships with pathological characteristics known from birth (hydrocephalus and level of lesion). Data were collected from medical records and by physical examination. Functional independence was assessed on six domains (self-care, sphincter control, transfers, locomotion, communication, and social cognition) using the Functional Independence Measure (FIM). Participants were 165 patients with spina bifida (69 males, 96 females; age range 16 to 25y, mean 20y 9mo [SD 2.9]; 117 with hydrocephalus). Patients without hydrocephalus were independent for all FIM domains except sphincter control, as were patients with hydrocephalus with a lesion level below L2. Most patients with hydrocephalus and a lesion at L2 or above were dependent as regards sphincter control (98%), locomotion (79%), and self-care (54%), and quite a few needed support in transfers (38%), social cognition (29%), and communication (15%).

Interrelationships of sex, level of lesion, and transition outcomes among young adults with myelomeningocele

“…Consistent with previous reports of the central role that independence in daily life activities plays in one's capacity for community living, 10 self-management was a significant predictor of living situation. Participants who reported greater selfmanagement skills were more likely to have current residence in unsupervised settings.…”

Activity Level, Functional Health, and Quality of Life of Children with Myelomeningocele as Perceived by Parents

“…Many other studies reported a similar association [2,3,11,12,16,28]. Davis et al [9] looked at 158 adolescents and reported 84% of the individuals were shunted.…”

“…Children with more than four shunt revisions also have a lower functional level [2,11,12,28]. Transition from childhood to young adulthood can be an especially difficult developmental period for those with MM [14].…”

Independência funcional de crianças de um a quatro anos com mielomeningocele

“…It is essential to guide the families so that children acquire the greatest independence possible, considering the scores of each age group. Physical therapy also aims to prevent secondary deformities, decubitus ulcers, and secondary cognitive changes 3,[9][10][11] . Physical therapy should promote the learning of motor skills, postural adjustments, independent locomotion (if necessary, with resources such as crutches or a wheelchair), to ensure the maximum functional independence possible 3,5,9,12 .…”