I found an article published by a panel of researchers from CP Alliance and the University of Notre Dame reviewing research on interventions for children with cerebral palsy. I came across it the day after I wrote the post in response to the FDA warning about the use of HBOT treatment for the autism and cerebral palsy communities. Their goal was to present a comprehensive summary of information for clinicians and other interested parties to have a clearer understanding of what has been discovered about the effectiveness of pediatric CP treatments. This was an enormous undertaking and I am deeply grateful for this effort. Although the intended audience of their article was medical providers and professionals working with and on behalf of the CP community, I felt it was also important to circulate a layperson’s version of this critical information to the CP community.
One hundred and sixty-six articles met the criteria to be included in their analysis and several approaches were used to illustrate, evaluate and code the evidence in the studies reviewed. One of these approaches was an “Evidence Alert Traffic Light” which assigns colors of green, yellow, or red, based on the level of supporting evidence for each intervention. Green indicated that the panel felt the literature supported “doing an intervention”, yellow evidence supported either “probably doing it” or in some cases “probably not doing it”, and red meant “do not do it” because alternatives exist or the panel determined that there was enough evidence to demonstrate an intervention is ineffective.
The panel hopes that by having this research analysis summary in one paper clinicians, managers, and policy-makers will be provided with a “helicopter” view of the best available intervention evidence that could be used in furthering understanding and decision making about what is and is not working for the CP community.
Some things to keep in mind about the information presented in the graphics illustrating their research findings:
1. There is no new information being created through this research article. The information being presented is an analysis, summary and presentation of existing published studies in the CP pediatric population.
2. Although all sub-types of CP were included in this research analysis the majority of studies focused on interventions for spasticity.
3. 70% of CP interventions within clinical care had either lower-level evidence supporting their effectiveness or inconclusive evidence which placed them in the yellow category.
4. The lack of certain efficacy evidence for large proportions of the interventions which comprise standard care for cerebral palsy is a problem for people with CP, healthcare providers, and entities funding treatment. More research using rigorous designs is urgently needed as CP is the most common physical disability of childhood with lifelong impact. What is noteworthy is that despite the need for more research and financial support, the authors do state that in the last ten years there is an international trend toward increasing numbers of studies being published about CP interventions.
5. The panel of researches noted within the article that it is critical to begin to properly evaluate outcome measures when prescribing assistive technology and devices for children with CP since devices form a large part of standard care. They state that this type of research probably hasn’t been conducted very often due to cost and because benefits are often easily observed. However, because of device abandonment issues in the CP community and the associated costs, they believe efficacy research is important for helping individuals and the larger CP community make decisions about equipment.
6. There was at least one intervention in the “red” category that we use with Maya because it has a large body of research that demonstrates it is not an effective treatment. We have known for some time that there was no evidence for its efficacy yet we have continued to use it. Perhaps some of you will see an intervention in the “red” category you have tried or currently use for yourself or your child who has CP. In order to determine how an intervention was evaluated one would have to look at the individual studies that were reviewed.
Research is a moving body of knowledge. It is often our best collective and objective determination of what is or is not happening at a particular point in time and with a specific group of people. This article focuses on the importance of clinicians knowing and discussing with patients and families what the research literature demonstrates, as well as discussing the goals and desires of the family. In our case we are clear and feel informed about what the literature states about this intervention. We have weighed this information against our personal experience and the minimal cost associated with Maya having access to it. Sometimes the benefits a family or person identifies are not captured in a particular study or studies (and it may be the study wasn’t designed to assess those particular areas). But there also may be confounding variables or issues which have led someone to perceive an unproven intervention as beneficial.
I am not in favor of ignoring research findings, however, I do acknowledge that research has its limitations. Deciding to ignore peer reviewed and published research findings means that you have elected to go off on your own and this is tricky business especially if you are choosing to ignore safety advisories. As eager or sometimes desperate parents and individuals seeking improvement and hope for CP, it is easy to be tempted to ignore research in the hope of finding that someone has the answer or many scientists were wrong. As I stated in my post about HBOT, making decisions about alternative treatments without a body of research to review is one of the most stressful aspects of caring for our daughter. However, in a case where there is robust amounts of research on a particular intervention, choosing to ignore current findings is different territory altogether.
Yes, in one case we are ignoring the research findings. I am choosing to operate off of my own observations and bias, and it may very well be that my loyalty to this intervention is misplaced. I may be wrong that Maya is benefitting in small but important ways from this intervention and researchers just haven’t been able to capture those benefits in their analyses. This is precisely the kind of reasoning this panel is hoping to help parents and individuals to avoid. Point taken! I will keep this in mind and continue to critically evaluate the perceived benefits I have identified and what else they may be due to. I also encourage other parents and individuals to do the same especially when there are financial sacrifices at stake and/or especially safety concerns.
Now for the panel’s analysis:
**Please remember that the following graphics are for educational purposes only. The information presented here has been extracted from the following article published August 21, 2013 in Developmental Medicine and Child Neurology. The information discussed and presented in the comprehensive twenty-six page review has been simplified to offer you some of its highlights. It’s important to note that additional topics and nuances about the information presented have been discussed within the article.**Always consult with your physician about medical treatment and advice.
Here is a link to the study on PubMed: “A systematic review of interventions for children with cerebral palsy: state of evidence”
Below are the graphics I created to present the information from the study. They also had graphics that were used in the study and they were more comprehensive than what we have here:
The first graphic depicts their evaluation of evidence for improving motor activities. If you are having trouble view the graphic you may use this link
The next graphic outlines the panel’s assessment of Spasticity Management findings. For easier viewing you use this link to the graphic.
The next graphic depicts the panels review of interventions for improving muscle strength. Here is the link for better viewing.
The final graphic presents the panels findings about Contracture Management. Here is the link for better viewing.