Adults with spina bifida : from health and living conditions to motor-cognitive performance

Abstract

Spina bifida (SB) is a congenital spinal cord dysfunction often leading to physical, medical and cognitive challenges. The level and extent of the spinal involvement often affects both sensory and motor function and secondary complications are common. There is a knowledge gap regarding adults with SB. The first part of this thesis aimed to describe health and living conditions of adults with SB in different age groups. Also, to identify and describe ambulatory and cognitive function within different levels of muscular function (MF). The second part aimed to describe gait and balance in ambulatory adults and explore motor cognitive performance during walking while performing a cognitive task.

A cross-sectional study was performed on a near-total regional cohort of adults with SB. Participants were consecutively invited and interviews, questionnaires and assessments on physical, medical, social, and cognitive function were performed. A total of 196 participants were included (104 women 53%, 18-73 years, md 33 years [IQR 23]). Those with MF level 3 (hip flexion and knee extension grade 4–5) were further investigated for potential factors associated with ambulation.

In the second part, 41 were included (49% women, 19-59 years, mean 37 [ SD 12]) with a regular daily walk distance >30 meters. A sensor-based gait analysis system was used to capture gait characteristics and dynamic balance was assessed with the Mini-BESTest. Motor and cognitive performance as well as the Timed up and go (TUG) was explored in both single task and dual task (DT) condition.

In the total cohort 54% were ambulators and 46% used a wheelchair. Mode of mobility and cognitive capacity varied substantially across the group. A linear association was seen for presence of HC, contractures, and scoliosis with a lower degree of MF. For those with MF level 3 ambulation was independently associated with BMI, scoliosis, and a higher cognitive capacity. The youngest participants had a higher prevalence of HC and tethered cord symptoms, and fewer had passed compulsory school. For those included in the second part mean gait speed was 0.96 m/s (SD 0.2) and for the MiniBESTest 11 (SD 7). Participants with MF level 3 showed lower results (p≤.001, p≤.05 respectively) and a larger thoracic lateral sway (p≤.05). A DT cost was seen for gait speed (4%). For cognition a small DT cost was seen in accuracy, but no difference was seen in reaction time (p≤.05, p=.14 respectively). The largest DT cost was seen for TUG.

Adults with SB have a complex set of physical, medical and cognitive problems that must be addressed to increase health and living conditions. More extensive problems were seen in the younger persons, who will most probably need more interventions in the future. Adults with SB showed a significant DT cost on most of the analysed parameters of gait, possibly indicating a risk of falling. Tailored follow-ups are important to meet the differing needs. The results can improve health and living conditions for adults with SB and contribute to more targeted interventions and better care.