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Functional independence among young adults with spina bifida, in relation to hydrocephalus and level of lesion
Marjolein Verhoef1, Hans A Barf, Marcel W M Post
1Rehabilitation Centre De Hoogstraat, the Netherlands.
Insights
Young adults with spina bifida show varying functional independence. Those without hydrocephalus or with low lesions achieve independence, while higher lesions impact self-care and mobility.
Area of Science:
- Neurology
- Rehabilitation Medicine
- Developmental Pediatrics
Background:
- Spina bifida treatment decisions for newborns can benefit from understanding long-term functional outcomes.
- Assessing functional independence in adulthood is crucial for guiding early interventions.
Purpose of the Study:
- To determine the level of functional independence in young adults with spina bifida.
- To investigate the relationship between functional independence and congenital factors like hydrocephalus and lesion level.
Main Methods:
- A cohort of 165 young adults (16-25 years) with spina bifida was studied.
- Data were gathered from medical records and physical examinations.
- Functional Independence Measure (FIM) assessed six domains: self-care, sphincter control, transfers, locomotion, communication, and social cognition.
Main Results:
- Patients without hydrocephalus were independent in most FIM domains, except sphincter control.
- Patients with hydrocephalus and lesions below L2 also showed independence, barring sphincter control.
- Higher lesions (L2 and above) in hydrocephalic patients correlated with dependence in sphincter control (98%), locomotion (79%), and self-care (54%).
Conclusions:
- Functional independence in young adults with spina bifida is significantly influenced by the presence of hydrocephalus and the level of spinal lesion.
- Lesion level is a critical factor, with higher lesions posing greater challenges to independence, particularly in mobility and self-care.
- These findings can inform treatment strategies and support planning for individuals with spina bifida from birth.
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%).
