Orthopedic guidelines for the care of people with spina bifida

Abstract

Orthopedic or musculoskeletal problems are common in individuals with spina bifida. They can affect function and mobility and, in the case of spinal deformity, affect pulmonary function. We discuss the current treatment guidelines developed through collaboration with the Spina Bifida Association and the Orthopedics and Mobility working group using a specific methodology previously reported [1,2]. General considerations are discussed followed by evaluation and treatment guidelines for specific age ranges. References are provided where applicable, but where data is lacking treatment guidelines fall under the umbrella of clinical consensus. This leaves “research gaps” where areas of possible future study could be considered.

Spina Bifida

“…Scoliosis is generally proportional to the level of neurologic impairment and is more common in those who are nonambulatory. [19][20][21] Scoliosis screening is by clinical examination and monitoring with supine x-rays until the patient is able to sit for x-rays, with repeat x-rays every 1 to 2 years or when indicated clinically. 19 Rapid development or progression of a spinal curve may indicate a tethered cord or syrinx.…”

“…[19][20][21] Scoliosis screening is by clinical examination and monitoring with supine x-rays until the patient is able to sit for x-rays, with repeat x-rays every 1 to 2 years or when indicated clinically. 19 Rapid development or progression of a spinal curve may indicate a tethered cord or syrinx. 22,23 Body casting and bracing have not been shown to be effective in the management of neuromuscular scoliosis and may increase the risk of skin breakdown in children with insensate skin.…”

“…24 There is no current consensus on any specific surgical intervention or on timing of intervention for scoliosis. 19…”

Development of a core outcome set for the orthopaedic management of spinal dysraphism

“…For this reason, their care is often challenging with no clear consensus among clinical practitioners on best practice for management of the different musculoskeletal problems. This in turn leads to variability in care and guidelines, 6,7 which may be exacerbated further by the lack of standardization in outcome reporting in studies reporting different orthopaedic management strategies for SD. This is often the main limitation in defining the rate of success for each clinical intervention.…”

Team Approach: The Management of Adolescents and Adults with Scoliosis and Spina Bifida

“…While life expectancy has improved, the incidence of co-occurring orthopaedic conditions such as scoliosis has remained the same 13 . Ideally, the evaluation and management of scoliosis should be carried out by a multidisciplinary SB team with the use of evidence-based guidance 14 , but having a robust multidisciplinary approach is uncommon and even more sporadic in the care of adults 15 .…”