New thesis about adults living with spina bifida

My thesis focuses on adults with Spina bifida. 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.

Which are the most important results? 

Adults with SB have a complex set of physical, medical and cognitive problems that must be addressed to increase health and living conditions. 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 (hip flexion and knee extension grade 4–5) ambulation was independently associated with BMI, scoliosis, and a higher cognitive capacity. 

The youngest participants seemed to have a more complex life situation with more associated problems such as a higher prevalence of Hydrocephalus and tethered cord symptoms, and fewer had passed compulsory school. They will most probably need more interventions in the future. Adults with SB showed a Dual Task cost on most of the analysed parameters of gait, possibly indicating a risk of falling. For cognition a small Dual Task cost was seen in accuracy, but no difference was seen in reaction time

How can this new knowledge contribute to the improvement of people’s health? 

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. Thereby decrease the risk of secondary conditions, and improve health and living conditions for adults with SB.

What's in the future for you? Will you continue to conduct research? 

I have a new job, as the head of the Spinalis outpatient clinic, at Aleris Rehab Station, Stockholm - a specialized clinic for adult persons with spinal cord dysfunctions. We have almost 1 500 patients at the clinic, and over 200 with Spina bifida.

I will work in close collaboration with the research and development department at Aleris Rehab Station and will be involved in the research at the clinic. I will also continue to be affiliated with the Division of Physiotherapy at KI.

Also, we have future plans for further research involving adults with SB. For example, in order to better understand dual task effects, it would be interesting to explore this in a larger cohort, including persons using a wheelchair for mobility. As SB is a rare condition and larger samples are inevitably hard to obtain without multi-centre studies, we hope for collaborative efforts between research groups both nationally and internationally.