SusanR

Dear RationalAquarmarineReindeer,

Thanks for your suggestion on research to improve CPAP adherence! There is some work in this area, but there needs to be more--and a need for more research on compliance where the patient is an active partner (as it is the patient who knows best about the challenges in using CPAP).

Some of the researchers working in this area include Mark Aloia (from Denver), Jesse Bakker and Kate Dudley (Harvard), Terri Weaver (UIC), Molly Billings (U Washington) and others. Our team at Brigham and Women's Hospital just tested a behavioral intervention that included problem solving and motivational enhancement and found this intervention resulted in over an hour more of average CPAP use per night. It was modeled after Mark Aloia's behavioral intervention for improving CPAP compliance. It was delivered by a behavioral sleep psychologist working with a highly trained respiratory therapist--we are now planning on submitting the paper for publication and also considering how to make such an intervention more generally available, for example, via internet. I think this type of intervention could be much improved with working more closely with patients and hope to see the MyApnea.Org community work on this.

One of our next surveys that we will be unrolling in MyApnea.Org is one that focuses on adherence. We found out that there is no single adherence questionnaire we could use so we are developing a new one. I will talk to our team to see how we can get broader input on these questions for you and others in MyApnea.Org to make sure we are collecting some of the key information.

Also, in S Kaiser, I know that Dr. Dennis Hwang is very interested in these issues too and he may be able to point to work that Kaiser is doing in this area.

Hi Barbz,

You are sending an important message: poor sleep can result from any number of problems--although we first think of a poor mask or suboptimal PAP pressure in a patient wearing CPAP, it is always important to understand that any physiological, social or environmental factor that interferes with your ability to sleep soundly for 7 to 8 hours per night (average need for most adults) can impact your alertness. Hope you are feeling better now!

My colleagues and I just published an article in this month's journal Sleep reporting data from the Multiethic Study of Atherosclerosis (Sleep. 2015 Jun 1;38(6):877-88. doi: 10.5665/sleep.4732.). This is a study of over 2,000 people from 6 cities across the U.S., and which specifically included African Americans, Hispanics, Chinese and European Americans. Knowing that different group experiences different health outcomes (for example, stroke and diabetes risk is very high among African Americans) we sought to see how sleep disorders also varied by ethnic and racial group.

First, we found a very high prevalence of undiagnosed sleep disturbances in middle-aged and older adults: 34% of middle aged and older individuals from the community (not referred for a sleep problem) had moderate or severe sleep apnea; 23% had insomnia; 14% repored excessive sleepiness; and 31% routinely got less than 6 hours of sleep per night (7 to 8 hours is recommended).

Furthermore, short sleep duration (< 6 hrs per night) was almost 5 time more prevalent in African Americans than in whites. Chinese and Hispanics had more sleep apnea than whites.

Since sleep disorders contribute to risk of cardiovascular disease, stroke, and diabetes, this study highlights the need to better screen for undiagnosed sleep apnea in middle-aged and older adults, and ensure that these strategies reach all populations. The study also supports the need to address the stress and social and environmental factors that may be contributing to the curtailed sleep of African Americans and others.

How can we as a community improve recognition and treatment?

On June 24-25, 2015 Harvard Medical School sponsored an exciting conference that brought patients, parents, clinicians, informaticians, regulators, researchers and lawyers together to discuss the opportunities and challenges related to precision medicine (https://cbmi.med.harvard.edu/events/precision-medicine-2015-patient-driven). This rapidly developing area of medicine aims to match specific treatments to each person, using a variety of information such information on genetic background, environment, and disease characteristics. The idea is to use a variety of information to make sure that the chosen treatment for any given disease in each person is directed at the right targets--maximizing benefit and reducing harm. For example, in the future, a patient with a new diagnosis of sleep apnea might not just be offered CPAP, but undergo additional tests to determine what exactly is causing his or her sleep apnea--does he or she have relatives with sleep apnea? are there genes that can be targeted to improve sleep apnea? are there very specific aspects of anatomy or breathing that can be specifically targeted with a drug or customized device?

To fully harness the power of this approach, there is a need to bring together vast amounts of data (genetic and clinical data) and use sophisticated tools to best identify how to target those molecules or physiological processes that need to be fixed to improve health. Although there are incredible opportunities to use vast amounts of biological data, the meeting participants also discussed some of the ethical and regulatory barriers to getting all of the information together. Megan O'Boyle from the Phelan-McDermid Syndrome patient PCORNet network spoke about her campaign to bring her daughter's records into research registeries and the blocks she has experienced in easily accessing those records. There seemed to be consensus that the eloquent voices of parents and patients like Megan will help our research and health systems to develop better ways to protect privacy while making sure the data are being used to benefit patients.

I hope that with MyApnea and the Sleep Apnea Patient Centered Outcomes Network we will also importantly contribute to the dialogue on how to gather and use large amounts of information to develop "precision" treatments. We are just building MyApnea but I believe the potential is huge for patients with sleep apnea to benefit from precision medicine. How can we build this better?

There were several presentations of patient centered outcomes research, PCORI, PCORnet (the network MyApnea.Org is part of) and MyApnea.Org.

As part of a post-graduate course on novel methods in sleep research, I presented a talk on the role of patient-centered outcomes research in addressing gaps in our health care system and as a means for generating better evidence for patients and doctors to make decisions. Clinicians, researchers and members from tech companies were there and expressed interest in working with MyApnea to help us grow our community and improve its impact.

Dr. Vishesh Kapur, a member of the MyApnea.Org Steering Committee, presented models for collecting and sharing information in a symposium discussing the Electronic Health Record and ways to improve the information in clinical and research informatics systems for improving sleep diagnosis and management. Dr. Kapur's talk was very informative and led to further discussions with a number of stakeholders.

Dr. Redline chaired a symposium entitled the "Emerging Role of Patient Centered Outcomes Research". In addition to a presentation on MyApnea.Org, Dr. Terri Weaver from University of Illinois provided an overview of comparative effectiveness research; Dr. S Parthasarathy from University of Arizona discussed a peer-coaching program for improving CPAP adherence; and Dr. Clete Kushida from Stanford University presented a PCORI-funded project called SMARTDOCS which provides a portal for integrating health data in the daily care of patients with sleep disorders.

All of these projects were supported by PCORI-the Patient Centered Outcomes Research Institute-and showcase the sleep community's involvement in new kinds of research.

Let us know if you are interesting in learning more about these programs!

I have done research in this area. Home sleep studies are most appropriate for people identified to be at high risk for obstructive sleep apnea. In those individuals, the test can usually provide good data to confirm a diagnosis of OSA. Home sleep studies however can sometimes underestimate the severity of sleep apnea. So if you have a negative test, an in lab test may be indicated to make sure this was not a "false negative." Home sleep studies can be more convenient for some patients and several large studies have shown that patient outcomes (improved sleepiness, CPAP compliance) were similar for patients who fit the category of being at high risk for sleep apnea and got either a home or in lab test. Generally, in lab tests should be used when other sleep disorders- such as central sleep apnea or periodic limb movements- are being evaluated

Unfortunately, it depends on your insurance.

The criteria vary by company, but here is a list of criteria I found for one insurance company:
Have mild or moderate sleep apnea . Prefer not to use or who have failed CPAP treatment. Had surgery that did not work. Tried behavioral changes that did not work. Are at a healthy weight.

I am aware that some other insurance plans require that you "fail" CPAP before approving a mandibular advancement device. Also, most plans specify that the device you use is customized and titrated to meet your needs.

Generally, a sleep physician can refer you to a qualified dentist who then will evaluate you for this therapy. You can ask your doctor's office (or the dentist they work with) to check on what your insurance will cover.

Hi @RichinKansas-- Did your dentist have you undergo a second sleep study to confirm that the TAP-3 is titrated appropriately to reduce your apneas?

DeeNJai, Treating the combination of central and obstructive apneas can be challenging. Sometimes the central apneas improve once the obstructive apneas have been treated, and the body has had a chance to adjust to new patterns of breathing at night. However, some patients need specialized treatments, including machines that "adapt" to your breathing (ASV), which is different than "auto" (APAP) devices. You may want to discuss with your doctor how your breathing is apneas and sleep quality have responded to your current treatment. If you are still having apneas or awakenings at night, your doctor may want to make adjustments, including trying an alternative treatment.

Thanks for sharing your great research! Walking seems to help prevent the accumulation of extra fluid in the ankles. When fluid accumulates in the ankles, that same fluid can travel to your lungs and neck when you lay down-- causing the throat to collapse, making sleep apnea worse. It has been shown that this positive effect of walking on sleep apnea--preventing fluid from traveling to the lung and neck- even occurs in healthy people who dont have visible swelling in their ankles.

I now often recommend walking to patients with sleep apnea. Its so simple, and good in so many other ways too!