Relationship between neurological injury and patterns of upright mobility in children with spinal cord injury.

After a spinal cord injury (SCI), learning to walk often becomes the focus of rehabilitation for children and their families.1,2 Although the majority of children with SCI do not return to full-time functional ambulation, those who accomplish some level of walking report positive outcomes such as feeling “normal” again, being eye-to-eye with peers, and having easier social interactions.3 Although not frequently reported by patients, there is some evidence of physiological benefits as well.3–9 Regardless of age, upright mobility has been positively associated with community participation and life satisfaction.10–12 For children, upright mobility allows them to explore their physical environment, which facilitates independence and learning as part of the typical developmental process.13,14 With the use of standers, walkers, and other assistive devices, as well as a variety of lower extremity orthoses, it is a reasonable expectation that some children with spinal injuries achieve upright stance and mobility.7,9,13–21 However, there are 2 main challenges for clinicians and patients: understanding the factors that either encourage or discourage upright activities, and identifying how best to determine whether upright mobility is successful and meaningful. The literature on adults suggests that upright mobility is dependent on physiological and psychosocial factors. Physiological factors include the patient’s current age, neurological level, muscle strength, and comorbidities.14,22–27 Psychosocial factors include satisfaction with the appearance of the gait pattern, cosmesis, social support for donning/doffing braces, and assistance with transfer and during ambulation.3,9,19,28–32 The identification of outcome measures that provide a meaningful indication of successful upright mobility has been difficult. The World Health Organization (WHO) describes 2 constructs for considering outcomes – capacity and performance.33 Capacity refers to maximal capability in a laboratory setting. An example of a capacity measure is the Walking Index for Spinal Cord Injury (WISCI), which is an ordinal scale used to quantify walking capacity based on assistive device, type of orthosis, and amount of assistance required.34,35 Other capacity measures include the Timed Up and Go test and the 6-minute walk test.36,37 On the other hand, performance refers to actual activity during a patient’s daily activities in typical, real-life environments.33 For example, the FIM is an observation scale that scores the patient’s typical daily performance.36,38–40 The FIM is considered a burden of care measure that determines the amount of actual assistance provided to a patient during typical routines and environments, which may or may not reflect maximal ability or capacity. Performance measures provide an adequate clinical snap-shot of a patients’ daily function (evaluates what they do), whereas capacity measures are better research tools, as they are able to detect subtle changes in ambulation (evaluates what they can do). In children, no capacity outcome measures of ambulation have been tested for validity or reliability. Availability of reliable and valid performance measures is also lacking. The WeeFIM is a performance measure for children, but it is not SCI specific. It is scored on the child’s burden of care, that is, on the maximal assistance required rather than the child’s maximal independence or the highest capacity of performance during a typical day. For children, another commonly used scale is the Hoffer Scale, which relies on the physician’s or therapist’s subjective determination of the purpose of the upright mobility activities (for function or for exercise).41,42 Because parents and school systems are encouraged to integrate “exercise” ambulation into daily activities, it may not be possible to distinguish between therapeutic and functional ambulation in the home, school, or community environments. In the schools, a teacher/therapist should incorporate upright mobility into the classroom setting by donning a child’s braces and then having her/him ambulate a short distance to stand at an easel in art class or to stand upright when talking to friends during recess. In this situation, walking serves the dual purpose of being functional and therapeutic. For this study, it was decided not to rely on a subjective determination of therapeutic versus functional ambulation as the main outcome measure. Instead, we were interested in the children and adolescents who have successfully integrated independent mobility into their daily activities, regardless of frequency, distance, or purpose. Recent literature in studies of children and adolescents suggests that spontaneity is important for participation in functional and social activities. For example, a survey of patients using functional electrical stimulation for hand function found a reduction in the dependence on others for donning splints, which facilitated independence with activities of daily living (ADLs) in adolescents.43–45 In a more recent study, Mulcahey et al46 found that a reduction of spontaneity in adolescents was a barrier for social activity; during cognitive interviews, children reported not participating in sleepovers due to planning their bowel/bladder programs. To date, there are no measures that integrate spontaneity of standing and/or upright mobility into the daily activities of children. Toward that aim, this study introduces a new scale that attempts to categorize children into 4 mutually exclusive groups: primary ambulators, unplanned ambulators, planned ambulators, and nonambulators. The purpose of this study was to examine ambulation patterns among children and adolescents with SCI as a function of neurological level, motor level, and injury severity, as defined by the motor, sensory, and anorectal examinations of the International Standards for Neurological Classification of Spinal Cord Injury (ISNCSCI). A secondary aim of the study was to determine how performance on the ISNCSCI exam was associated with the ability of children to independently integrate ambulation into their daily routines.