The Billion Dollar Question

Will Patient Education Improve CPAP Compliance Rate?

October 10, 2007
By Tracy R. Nasca

Sleep awareness is on the rise. We have seen a huge increase in television commercials, documentaries, and increased media focus on accidents and fatalities cause by sleep related issues. It's in the news; we are paying attention. Everyone sleeps and most everyone has issues with their sleep, at the very least an occasional problem falling asleep or staying asleep. With sleep awareness on the rise, so is the diagnosis of obstructive sleep apnea (OSA).

The following statistics are provided by the American Sleep Apnea Association: The number of OSA sufferers in the US is 20 million. Of those 20 million, only 10-20% are currently diagnosed and treated. The incidence of symptomatic OSA in our population is Male 9% and Female 4%.

According to the Edward Grandi, Executive Director of the American Sleep Apnea Association, the patient compliance rate for CPAP is still an alarming 50-60%. That number is comprised of those patients who are diagnosed with sleep apnea and refuse treatment as well as those who try treatment and then abandon that therapy.

Why has the 50-60% failure rate not changed over the last decade? Don't sleep apnea patients realize that untreated OSA can be life threatening? Is CPAP therapy really so difficult?

It's my theory that patient education will improve compliance. I believe if patients knew the facts about OSA and received education from the medical professionals who are involved in the screening, diagnosis and treatment processes, the staggering compliance rate would substantially improve.

I have had the privilege of corresponding with hundreds of patients by phone or email every month over the past 10 or more years. I hear the same theme from the non compliant - "no one ever told me that". Too many are not told they have a choice in selection of machine and mask. Most are not told in advance to expect challenges during the CPAP adjustment period. Most are not told how to care for their equipment and when to replace it or that it even needs replacing on a regular basis. I can't tell you how many people have told me they gave up on CPAP because after a period of time their mask leaked. After pulling straps so tight they experienced pressure point soreness, they eventually stop using CPAP altogether. They never knew that mask leak means you need to replace the cushion or simply buy a new mask!

Generally speaking, I find that follow up care is practically non existent. Patients are not told that for most, apnea is for life, and not just a temporary situation that weight loss can cure. Many give up during the first few weeks or months when the adjustment period is difficult. They choose to convince themselves that if they just lose weight they won't need CPAP. Most patients are never told why they have sleep apnea and I believe if they understood this basic knowledge, they would be much more willing to find therapeutic compliance. Let's agree that the airway, tongue size and jaw play a huge role in the cause of apnea and patients are simply not told this. No matter how much weight a patient loses, the tongue and jaw do not change. I am a prime example of a patient with severe OSA. After gastric bypass and now a normal weight, I still have severe apnea and still require high bilevel pressures. I lost weight, but my tongue did not. Nothing changed with my apnea. Part of my success with treatment is knowing that I will always have sleep apnea and always use a BiLevel device. I have accepted this fact and have moved on with enjoying life rather than wringing my hands waiting for the apnea to go away for some mystical reason.

What are the OSA facts patients should be aware of? What level of education should the patients receive and from whom? Whose responsibility is it to educate the patient? Is it the physician, the sleep technologist, the respiratory therapist, the durable medical equipment supplier, the equipment manufacturer? Herein lies the problem, no one gets paid to do the education process; it's not insurance reimbursable! No one gets paid, so not many do it.

I am really bothered by this dilemma. I decided to interview a Sleep Pulmonologist, a Sleep Psychologist and a Respiratory Therapist to find out what sleep professionals perceive as the problem and what their solutions might entail. I chose local medical professionals because I am proud to say that the Minneapolis area has an outstanding track record for patient education. I assumed I would receive like-minded feedback and I was not wrong.

Joan M.K. Fox, MD, D'ABSM is affiliated with the Abbott Northwestern Sleep Center and Minnesota Sleep Institute in Minneapolis, Minnesota . Regarding responsibility for patient education, Dr. Fox told me, "I believe it's a collective effort, and yes, physicians should educate. There are many newly established sleep laboratories that may not have qualified experienced sleep specialists on staff to evaluate and examine sleep patients, order and interpret sleep study data, recommend appropriate treatment options, and follow patients through to successful treatment. Periodic evaluation for OSA patients should also occur in the Sleep Centers as primary care clinic staff are not experienced in managing OSA when problems arise. Patients should look for accredited centers and boarded sleep doctors."

I asked Dr. Fox if she thought it important to discuss with her patients the cause of apnea. "Many physicians don't understand the causes of sleep apnea. Even experienced sleep medicine professionals may find it difficult to say exactly which factors are most important in an individual patient". She went on to say, "airway size, skeletal limitation, palatal soft tissue, neurological compensation mechanisms are just a few reasons why one might have OSA. Therefore, each individual recovery may be different. Some of the factors that fluctuate treatment are, sinus, allergies, smoking, drink alcohol and fluid retention, all this contributes to variable treatment success. Most patients don't think about high risk things like stroke or heart unless they already had that issue." Dr Fox agreed with me that when patients understand the pathophysiology of their apnea condition and how is applies to them specifically, they are more apt to take their diagnosis seriously and are more compelled to work toward successful CPAP compliance.

Her patients follow a process geared to promote successful compliance. Results of the study come from the medical provider and include the important follow up contact. Patients have an initial consult, sleep study with a follow up. Upon OSA diagnosis, CPAP is delivered by Home Healthcare who teaches patients to use the machine and offer mask options. Her patients have a routine follow up and once successful compliance is achieved, they have a patient follow up annually.

Dr. Fox went on to say, ""Yes, everyone has a hard time from the get go. It may take time; the first issue to overcome is psychological -accepting the therapy. The next biggest barrier is mask fit, finding the right tolerable mask. Follow up helps with long term compliance. When symptoms are apparent it helps patients when they actually see results and benefit from CPAP therapy."

Attitude also plays a role in the critical adjustment period of CPAP therapy. I wanted to have a better understanding of psychological issues that may interfere with or challenge the newly diagnosed patient.

Michael Schmitz, PsyD, CBSM is a licensed psychologist who is certified as a behavioral sleep medicine specialist and currently the Clinical Director for the Behavioral Sleep Medicine Program at Abbott Northwestern Sleep Center in Minneapolis, Minnesota.

Dr. Schmitz tells me that his sleep patient base are primarily referrals from diagnosing physicians who have patients with compliance difficulties adapting to mask or other sleep issues like insomnia or which can interfere with compliance. At Abbott Northwestern Sleep Center, Dr. Schmitz told me that a Sleep Psychologist functions as a member of a multi disciplinary team constituting of sleep doctor, respiratory therapist and others involved in patient treatment process.

Dr. Schmitz believes treatment and education should begin with the first phone call from the patient when they call about sleep issues. Patients should understand the process of assessment including understanding what a polysomnogram (PSG) is and why it's indicated. If apnea is suggested, then further OSA education is important to help patients understand their condition and treatment options. Abbott Northwestern Sleep Center has a team made up of nurses and respiratory therapists for the patient education process coupled with Allina Home Medical and Equipment which has a higher than average compliance rate. Their goal is to provide a seamless continuity of care from the initial phone call to subsequent follow up with patients. Their sleep center staff meets monthly to review treatment process and quality of care.

Dr. Schmitz, as part of the sleep team, believes, "the better a patient understands their sleep disorder and its treatment the greater the chance they will be able to follow through with prescribed treatment.. A collaborative and supportive process of education, from initial consultation to follow-up care, provides a strong foundation towards helping patients successfully adjust to CPAP treatment. Supportive education also may help reduce psychological barriers to treatment such as fear and anxiety about the use of CPAP. While adequate education does not guarantee compliance, it is an essential part of the process. Similar to other chronic conditions such as diabetes, which often require daily involvement or intervention by the patient, one would certainly want to provide the level of education and support for people with OSA needed to help them successfully manage and adjust to their condition."

Although this article is focusing on the poor sleep apnea compliance rate, I asked Dr. Schmitz, to opine on the psychological aspects of challenges that newly diagnosed OSA patients face. I was curious about how a Sleep Psychologist might work differently with a patient as opposed to a Sleep Pulmonologist. Again, Dr. Schmitz reminded me that most of his OSA patients were non compliant and referred to him by their diagnosing physician.

"Unlike some conditions that require little active involvement by the patient, the treatment of OSA is often experienced as a significant change in lifestyle and behavior affecting sleep habits, routines, and sometimes their relationship. As part of the sleep medicine team, I help patients address psychological and behavioral challenges that affect their ability to effectively treat their OSA., including fear or apprehension about using CPAP." According to Dr. Schmitz, supportive education about the use of CPAP combined with good mask fit significantly reduces anxiety and resistance to using CPAP. He uses sleep specific cognitive behavioral therapy methods targeting insomnia, sleep hygiene issues and concerns about use of CPAP itself.

To summarize, Dr. Schmitz told me that physician involvement with patient education after diagnosis was complex. Practice factors play a roll and he believes that the best approach is the collaborative relationship between patient and the aftercare professionals who can provide adequate patient education at the level appropriate to the patient. He believes in allowing patient to receive feedback about their diagnosis and treatment.

Lastly, I interviewed Bob Fairbanks, RPSGT, who manages the Ridgeview Sleep Disorder Center in Waconia, Minnesota. He has been a registered sleep technologist and involved in the field of sleep for 7 years. I view this sleep lab as a great example of "how to do it right". Bob tells me that their educational program is a "very regimented process". It begins with the physician screening appointment. Their sleep physician evaluates the patient which includes the Epworth Sleepiness Scale and if screening implies a probable sleep disorder discussion begins right then with treatment options which include surgical, dental solutions, treatment for positional sleep apnea and the gold standard treatment using CPAP. The patient is sent home with a fact sheet provided by the doctor.

Education continues on the night of the polysomnogram where their patients all watch a video about sleep apnea while they are being "wired up". In addition, the sleep technologists also go over the OSA fact sheet which again explains what sleep apnea is, what the polysomnogram entails and what treatments might be available when the diagnosis is made.

In most cases the sleep physician makes the diagnosis the next morning upon completion of the PSG and education immediately follows. Most diagnosed patients go home with their mask and machine but the education does not stop. They have scheduled follow up calls with patients.

Bob says, "we provide monthly support group meetings for continued sleep disorder education". We recognize that our patients are sleepy and many have memory issues from sleep deprivation. We try not to overload them with information; we provide a continuing education approach."

I asked Bob how they measured their patient compliant rate which is an impressive 85%. He informed me that they use the Epworth Sleepiness Scale. Their average patient prediagnosis has a rating of 13. After about one month of treatment, most of their patients register as 5.

"Do you tell patients why they have OSA", I asked. Bob said, "no, it is not a routine part of our education. We start with the basic information, again trying not to overload our sleepy patients. We do make sure they know it is highly hereditary and ask them to inform other family members who may also have OSA."

I like Bob's approach of providing the education little by little, as much as the patient can handle at any one time. It makes sense to present a video and provide a fact sheet they can take home. I also think the monthly support group meetings are very important. Most sleep labs that have support group meetings quarterly or annually. Offering monthly meetings makes help available to patients during the difficult adjustment period. I'm sure its just one of the reasons why the Ridgeview Sleep Disorder Center has an admirable compliance rate.

Although I have presented opinions expressed from three local sleep community members, I have spoken with many medical professionals. In my travels which include speaking engagements, I make it a point to discuss this topic of patient education. It's often part of my presentation to medical professionals. Most of the physicians inform me that they see their role as diagnostic only. They feel education is the responsibility of home healthcare who is paid to deliver the equipment. Home healthcare providers tell me that there is not enough profit in reimbursement dollars for them to spend a lot of time on patient education much past first issue of prescribed equipment. Many sleep technologists tell me their role is concentrated on providing a valid diagnostic study. Many of them tell me education should begin after the diagnosis, after the patient has left their sleep lab setting. It's not that these groups are "passing the buck"; I think everyone agrees that patient education is important and essential for recovery. The problem is that no one group sees it as their responsibility.

The reality is that typically, there may not be adequate time or reimbursement dollars for patient education in our healthcare systems today. My philosophy is that, if it's all about money, think of the millions of lost dollars in replacement equipment. I don't see why equipment providers cannot make that connection. If patient education increases compliance, they will surely retain a solid patient base and enjoy repetitive sale of replacement masks, tubing and future CPAP machines. Consider my situation...I have purchased 6 flow generators via insurance in my lifetime at a billed cost of about $30,000. In addition, allowed two mask purchases per year, at a conservative rate of $200.00 per mask, I have been billed over $7,200. Truth be known, I have spent even more "out of pocket" between allowed covered time periods for additional masks, filters and tubing. Conservatively, I have purchased over $40,000 of equipment to date and if I live another 20 years that number can easily be doubled. If you consider there are still 16 million Americans who have yet to be diagnosed multiplied by $80,000 that equates to over 12 BILLION dollars. Doesn't that profitability alone justify the small cost of patient education?

When will insurance providers realize that reimbursing patient education for sleep apnea will save them dollars? CPAP equipment is much cheaper than treating heart attack, stroke, hypertension and other common diseases and disorders related to the untreated apnea patient. Will patient education increase the poor CPAP compliance rate? The logical answer is yes. If the incentive is money, there's plenty to go around.