SusanR

Thanks for posting Mike! There is a tremendous amount of energy among the patient powered research networks that are working together in this new network. Seth gave an eloquent description of the potential.....of course, making new breakthroughs are only possible by everyone working together in a completely new way!

This nice review also identifies how too little sleep but lack of oxygen (from OSA) might together cause problems with memory. Our research group is particularly interested in how poor sleep may affect young children and the elderly---possible "critical" time periods.

Thanks Joe for clarifying this. Absolutely correct- this study did not address the role of using supplemental oxygen along with CPAP, which is often needed in patients with lung disease or what is called "hypoventilation" disorders. Thanks for the clarification.

Hi @DariaVader

Thanks for the feedback - we definitely hear your concerns and understand where you're coming from. These forums are intended to promote discussion among members- patients, family members, clinicians and providers- to provide much needed and trusted support. The forums are also intended to generate ideas from patients about the questions and research THEY feel is of greatest interest to them. The forum is moderated for several reasons, but the most important is for the safety of our members and to ensure that it remains a trusted site. As a medical institution, we must be cautious to avoid content that is misconstrued as direct medical advice which is regulated by law and medical professional standards.

That being said, over 95% of posts have been approved, showing that most of the discussions patients are interested in having are indeed going on. We hope to hear your voice in ongoing discussions!

Great questions!

First, we are working on improving the content of the feedback. We will be soon posting some sample feedback graphs to get your input. Please let us know which are most useful.

The initial questions we chose were selected based on several factors: patients and researchers prioritized areas of most interest to them; we had requests by the Patient Centered Outcomes Research Institute to collect some information that would allow patients with different health conditions to be compared; and we chose the instruments we knew in these areas with the best published validation. In these first surveys, we tried to pay special attention to experiences getting diagnosed, the quality of the health care experience, and symptoms of sleep apnea. We also included questions on family history and other health problems. As we continue to develop the network we will add more surveys, add the ability to complete daily diary type information and upload device data to track health parameters, and also ask everyone to do some follow up surveys. Please let us know what questions you think would be useful to include in the next round of surveys!

Enrollment is indeed a "convenience" sample. If we can enroll many 1000s of patients, however, we will reduce the likelihood of bias. Tell people you know with sleep apnea to join and increase the numbers!

We work with some excellent statisticians, so we will also be sharing ways for you to better understand the information you provide.

Again, thanks for your support and great comments!

Depression has many causes. The data indicate that in many, but not all individuals with symptoms of depression and sleep apnea, depressed mood improves with effective sleep apnea treatment. However, every person is different. As a physician, I have had some depressed patients who felt "reborn" after sleeping well on CPAP. I also have seen some others who reported no improvement, as you do. What we don't know is how to recognize the types of depression that are more or less likely to improve with sleep apnea treatment- as MyApnea enrolls more and more patients, we can look for such patterns to help us understand this.

Even if you are not feeling improvement in your mood, treating sleep apnea is useful for reducing the risk of heart disease, stroke and other health problems. Hope you are feeling some relief!

There is also a mood patient powered research network you can consider joining.

Truckerdad,

You raise some interesting topics. As you know, there is some ongoing research on the best ways to screen truck drivers for sleep apnea. One large trucking company showed that once they implemented screening and treatment for sleep apnea, the number of crashes fell significantly. However, I am unaware of research addressing how to best accommodate patients with sleep apnea.

Here is one nice overview of the general area, but it does not address your specific concern://www.sleepreviewmag.com/2014/10/sleep-apnea-trucking-now/

You bring up the important issue of how the truck industry can support drivers who want to be compliant. They should be rewarding you for your commitment to wearing CPAP, not punish you. This issue certainly needs to be addressed! I have colleagues working in this area and will highlight this to them. MyApnea may help us solicit more stories and directions to pursue. Many thanks for this post!

One big goal of the ASA trial is to identify side effects and who is most susceptible to these. They will be collecting medication histories as one of the factors they can test to see if meds like proton pump inhibitors influence risk of bleeding or other outcomes. We hope they will collect sleep apnea data so we can see if having sleep apnea influences whether low or high dose ASA is more effective/safer.

Over the years, my colleagues and I have had requests to prescribe oxygen for treating sleep apnea in patients who do not tolerate CPAP. This made some sense since some of the complications of sleep apnea are driven by a lack of oxygen during periods of apnea. However, there has been little research addressing the role of oxygen as a sleep apnea treatment. We therefore designed the Heart Biomarker Evaluation in Apnea Treatment (HeartBEAT) study. With funding from the American Recovery and Reinvestment Act, we conducted a clinical trial at four U.S. medical centers comparing the health outcomes of patients randomized to receive either healthy lifestyle and sleep education alone (the control group), or that in addition to either CPAP or nocturnal supplemental oxygen. The main study outcome was 24 hour blood pressure level, measured using a cuff that records blood pressure during the day and night. (24 hour blood pressure is often elevated in patients with sleep apnea and contributes to risk of stroke and heart attack.)

The results of the trial were published in the New England Journal of Medicine in June, 2014 (N Engl J Med. 2014 Jun 12;370(24):2276-85.PMID:24918372). A total of 318 patients with sleep apnea and risk factors for heart disease were enrolled in the study and followed for 3 months. CPAP performed significantly better than either control or supplemental oxygen in terms of reducing blood pressure levels. The effect of CPAP on blood pressure was greatest at night, the time when sleep apnea often prevents the expected fall in blood pressure. Moreover, the decrease in blood pressure was seen despite generally well-controlled blood pressure measured during routine clinic visits.

What does this research mean to you? The study was designed to most directly address the role of oxygen and CPAP as a means for reducing heart disease risk factors, such as improving blood pressure control. It focused on patients who had risk factors for heart disease, had moderate or more severe sleep apnea, and were not very sleepy. The study supports a beneficial effect of CPAP on blood pressure and does not support supplemental oxygen for helping with blood pressure control. The average improvement in blood pressure levels- by 2 to 4 mm mercury- is small, but occurred over and beyond the effects of routine hypertension medications. The improvement in blood pressure is estimated to reduce, on average, the risk of death from stroke by 10%. Because sleep apnea commonly elevates nighttime blood pressure levels, and many people are unaware of this, the findings suggest that CPAP may benefit many patients with sleep apnea.

More about the study's background can be found: http://tune.pk/video/5868591/sleep-apnea-research-the-heartbeat-study-susan-redline

We are still analyzing data from this study and also examining whether oxygen helps with fatigue, mood and quality of life. It would be of interest to better understand our members experience with oxygen and whether we should think about new questions to ask of the data in this trial.

Kevin, thanks for this great, evidenced base summary. I know alot of patients may be disappointed that CPAP use itself does not usually lead to better weight control. How CPAP does effect energy balance is indeed a very interesting question. Your post also emphasizes that an "integrated" and balanced approach for health is a good tact- making sure that sleep, diet, exercise and stress are all addressed.