The Case of the Didgeridoo

Last time we got the ball rolling on how the MyApnea.org community could provide a forum for sharing and testing new solutions to the challenges of living well with sleep apnea. This time we would like to share an experiment people with sleep apnea did to see if playing the didgeridoo helped their breathing and tell you more about how to put an N of 1 experiment together.

Back in 2015 a blog post here on MyApnea.org described the first published article looking at the value of practicing with the didgeridoo for reducing daytime sleepiness and snoring. The didgeridoo is an Aboriginal Australian wind instrument traditionally made from a hollowed out log. Based on an observation by a didgeridoo instructor, a formal randomized control trial was done. The people in the photo above made theirs out of PVC pipe like this. The underlying theory is that playing the didgeridoo requires “circular breathing” that can strengthen the upper airway muscles. A small group of participants with moderate obstructive sleep apnea (AHI 15-30) were recruited and half were randomized to receive a semi-structured program (the experimental group) while the other half were put on a waitlist (the control group). The program for participants in the experimental group involved didgeridoo playing lessons and then a 20-minute practice done five days a week. Their AHI’s were collected for four months along with information on daytime sleepiness. The didgeridoo players saw their AHI drop from an average of 21 to 11.6. The control group also saw their AHI drop without participating in the program but only to 15.4. Importantly, the didgeridoo players saw a significant improvement in daytime sleepiness.

Figure 3 taken from the published article shows the actual results of the didgeridoo practice for each participant. As you can see, the changes in daytime sleepiness for some were modest and for others, significantly larger. By showing the results in this way, each person participating can see how well they did as compared to the group.

To our knowledge, the didgeridoo experiment has never been repeated. The reasons for a lack of additional and larger studies are unclear. But a lack of interest on the part of the sleep apnea community does not appear to be one of them. A quick search on this website and others devoted to sleep apnea shows that there is a good deal of interest and a good deal of individual experimentation.

The didgeridoo experiment is an example of how communities can pool their resources to answer questions of importance to them. Here are the steps you need to think about to get the best results:

1. Define what you are trying to accomplish. This seems obvious but is a critical step. The goal of the didgeridoo experiment was to see if regular practice with the instrument would improve AHI’s and reduce daytime sleepiness.
2. Define how you will do the experiment. The didgeridoo experiment was structured. There were two groups of participants; one group who practiced with the didgeridoo and a control group who did not. Both groups measured their AHI and daytime sleepiness both before and after the experiment. Another approach would have been for all of the participants to measure their AHI and daytime sleepiness before the experiment and then all practice with the didgeridoo. Each person then acts as their own control. This method is the simplest and most straightforward approach for communities to use.
3. Identify the right measurement that will best define your goal. People who use a CPAP device can obtain their AHI over a number of time periods. It would be important for each person participating in the experiment to do the measurements the same way and for the same time period.
4. Define what the intervention is as explicitly as possible. The didgeridoo experiment included a specific training period, a standard instrument, and a standard practice time: 20 minutes daily for four months. It is important to change as few things as possible when doing this kind of experiment. So things like time of use of CPAP, settings, etc. should be stable during the study period.
5. Define who will collect the information, how often and how it will be analyzed. This sounds far more complicated than it actually is. For example, a simple agreement that everyone participating will send their AHI and daytime sleepiness data to one central participant (or a few) on a weekly basis for the duration of the study. Fortunately, the general availability of Excel spreadsheet provides a great resource for storing and simply analyzing the data. The published study we mentioned looked at the baseline AHI and daytime sleepiness scale and simply calculated the change over time. This calculation is very easy do on Excel. You could also use Excel to make a graphic representation of your results as in Figure 3 above.
6. Did the experiment work? For example, your goal may be a change in AHI and/or daytime sleepiness of at least 25%.
   
7. Publish your results to the rest of the community. The intent of the experiment is to see if the intervention improves your condition and that of others. It is important to let others know if the experiment worked or did not.

We are proposing to get a system for sharing your “N of 1” experiments up and running on MyApnea.org. Please comment on this post if you are interested in the possibility of doing self-run experiments. We want to hear everyone’s thoughts.

This Health Hacking with N of 1 blog was started by two friends of the sleep apnea community, Harold DeMonaco and Christiana von Hippel.

Harold J. DeMonaco is a visiting scientist at the MIT Sloan School of Management with a keen interest in the innovation process in medicine and organizational behavior related to change. He formerly served as the Assistant Chief Medical Officer for Care Transitions and the Director of the Innovation Support Center at the Massachusetts General Hospital.

Christiana von Hippel is a doctoral candidate at the Harvard T. H. Chan School of Public Health. In addition to the sleep apnea community, she is working with young women diagnosed with breast cancer to study the coping innovations they are developing to improve their quality of life during and after treatment. She is working with colleagues at Dana-Farber Cancer Institute to translate impactful innovations into care recommendations for clinicians and coping resources for the larger breast cancer community.