Cerebral palsy : studies on health and social outcomes in young adulthood, and on treatments for spasticity and pain

Abstract

Cerebral palsy (CP) is a permanent disorder caused by a non-progressive brain injury or malformation that has occurred early in the development of the child’s brain. The disorder is characterized by dysfunction of movement and posture, with frequent but variable occurrences of other dysfunctions in cognition, perception, sensation, communication, as well as of epilepsy, and pain. The movement dysfunctions are often what is most apparent for an outside observer and interventions have traditionally focused primarily on movement. Spasticity, a type of abnormal contraction of muscles, is common in CP and an aspect of movement that is often targeted for treatment. As CP is a life-long disorder it is important to understand the long-term effects of treatments, especially if they are performed early in life. It is also important to understand how the disorder and the consequences of the disorder evolve ‘long-term’ as the individual grows up. Our knowledge of CP after childhood has been limited. Concerns have been raised on the topics of integration into society for adults with CP, and on some emerging health issues; especially a high prevalence of chronic pain. Understanding these issues and finding ways to manage them is a priority.

This thesis focuses on the health and social situation of individuals with CP right after childhood, and on specific treatments for spasticity and pain. This was done using a few separate methods. Health and social situation were investigated cross-sectionally in 20-22- year-old young adults with CP. The long-term effects of the spasticity-reducing neurosurgical procedure selective dorsal rhizotomy (SDR) were investigated using a consecutive case series. And botulinum toxin-A (BoNT-A) was tested as a treatment for chronic muscle-related pain in adults with CP by means of a randomized, placebo-controlled, double-blinded clinical trial. It was found that most young adults with CP still lived in their parental home; more so than in the general population. A majority of those without an intellectual disability had an occupation, but the risk of having no occupation at all was increased. Communication function classification level (CFCS), and intellectual disability were major determinants of the social outcomes, while gross motor function classification level (GMFCS) was not. The overall health-related quality of life (HRQoL) of young adults with CP was comparable to population norms. There were, however, significant sub-group differences across different levels of gross motor function. Pain and fatigue were prevalent across all levels of functioning. The SDR procedure was effective in the long term in reducing spasticity, but this did not prevent contracture development, nor did it seem to improve functioning. Finally, BoNT-A was not superior to placebo in reducing pain in adults with CP at six weeks after treatment. Pain intensity did, however, trend downwards in the BoNT-A group at the last follow-up, suggesting that trials of longer duration are warranted.