I have been sharing information with parents, families, and individuals with CP for several years now. I have sat in on professional conferences, listened to many of you share your passionate experiences with treatments, and had the opportunity to chat with some very dedicated and level-headed CP docs and therapists. Plus, just like all parents out there, I’m also trying to figure out the best treatments for my daughter! As a result of these experiences I have become very aware of the powerful placebo effect: when belief in a treatment is the sole or partial reason for its effectiveness.
Treating CP is tough. First, you have to figure out what aspect of CP you wish to treat and your treatment goals—pain relief, improved walking or sitting etc. Once you have clarity about these issues people often find that there are very few well-researched, non-invasive and effective treatment options. This realization often leads them to venture into alternative medicine and unproven therapies or procedures, to find new possibilities.
Investigating alternative therapies isn’t a bad thing in and of itself. But when using alternative therapies (and even mainstream treatments) we have to be careful when we evaluate their benefits. This is where the placebo effect comes into play. We often do not have research to help us figure out how much of the changes we see from an alternative therapy or procedure are due to an effect of a treatment and how much was due to our belief in them. This makes a difference because studies have shown that placebos canimprove individual’s perceptions of outcomes in up to 35% of cases*
In addition to the placebo effect, what works for one person with CP may not work for another. So often, parents become enthralled with a particular therapy or treatment and are naturally eager for other parents to try it with their children. But, remember if a parent whose child has CP has a different movement disorder under the CP umbrella, and different goals than your child, they may be sharing information with you that is not comparable to your situation.
There are two points here regarding the placebo effect and they pull in different directions. One is that we need to be careful not to turn our life and our family’s lives upside down, spending all of our money on an unproven treatment when something much less costly and much easier may have an equally positive effect. On the other hand, we need to know that thinking positively about a treatment, having an optimistic attitude and following through with it may bring its own healing benefits. The placebo effect is real and the power of our intention, and that of the people treating us, may be enough to produce results that surprise us all.
Placebos aren’t just relevant to complex issues like CP but have been shown to have powerful affects throughout many areas of medicine. The key is to understand how good the studies are that you are using to guide your treatment decisions, and make sure the placebo effect has been statistically considered in evaluating the outcomes presented. When your evidence is based on word of mouth, or the experience of others, the perceived power of the treatment may actually be the power of placebo!
Here are two articles about the placebo effect that you may find interesting:
* Beecher HK. The powerful placebo. JAMA. 1955;159:1602–6. [PubMed]