Orthosis use and ambulation in adults with myelomeningocele after orthotic management from childhood.

Background: Orthotic devices are required for walking in many individuals with myelomeningocele. Evidence concerning orthosis use is sparse, partly because of heterogeneity among groups and different definitions of the neurological level.

Objectives: The objective of this study was to investigate ambulation regarding orthosis use and satisfaction with orthoses after intense orthotic management during childhood.

Study design: The study design is a retrospective follow-up with a cross-sectional study at adult age.

Methods: Participants comprised 59 persons born in 1985 or later. Ambulation was categorized as community (Ca), household (Ha), nonfunctional (N-f), and nonambulation (N-a) groups. Orthosis use was registered at approximately 5 (Age5) and 12 (Age12) years of age and in adulthood (AdultAge). Satisfaction with orthoses was evaluated at AdultAge.

Results: At Age5, Age12, and AdultAge, orthoses were used by 100%, 98%, and 78% of participants, respectively. Ambulation deteriorated between Age5 and Age12 in 17% of participants and between Age12 and AdultAge in 46%. At AdultAge, 63% maintained their ambulatory function; and muscle function and hip and knee flexion contractures were strongly correlated with ambulation. The ambulation groups did not differ regarding satisfaction with device or services, except in 2 single items where the Ha group differed in ratings from the N-f and N-a groups.

Conclusion: The high frequency of orthosis use and similar satisfaction in all ambulation groups emphasize that early planning and follow-up of orthosis treatment during growth are important for mobility in adulthood. Our results also underline the importance of a close assessment of each individual's condition.