Patient Education: A Multi-Level Process

We are all aware of the staggering failure rate among diagnosed obstructive sleep apnea patients.

According to Edward Grandi, executive director of the American Sleep Apnea Association, the patient compliance rate for continuous positive airway pressure is still an alarming 50 to 60 percent. That number is comprised of patients who are diagnosed with sleep apnea and refuse treatment as well as those who try treatment and then abandon that therapy.

Patient education is the foremost factor in improving compliance. 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 compliance rate would substantially improve.

Patient education is my chosen profession — a privilege that has allowed me to correspond with hundreds of patients in person, by phone and email every month over the past decade. I hear the same theme from the non-compliant: “No one ever told me that.”

Roughly 25 percent of the patients I educate are those newly diagnosed and in the difficult adjustment period. Many are on the verge of giving up. Fifty percent have struggled with compliance for a year or more without realizing the benefit of therapy.

They present as frustrated, angry and at their wits-end with the lack of concern by physicians and home health care providers. This group knows it needs the therapy but does not know how to become successful.

The other 25 percent are people who abandoned therapy years ago and are considering giving CPAP another try as they have since developed serious comorbidities such as irregular heart beat, hypertension, heart attack or stroke, reluctantly forcing them back to treatment.

Some are just tired of being tired and are willing to give it another chance. A surprising number tell me that they experienced drastic weight loss or had nasal, jaw or airway surgeries that did not result in the cure they expected.

TYPICAL SCENARIO

After diagnosis, a patient is sent to local home medical equipment provider where he or she is presented with a CPAP device and mask. Often, mask choice is not given nor is much time spent with a patient to show fit and adjustment features. Patients are shown how to turn the device on and off and sent on their way to fend for themselves.

Most are not made aware of the devastating nature of untreated apnea, a key factor in encouraging therapeutic compliance. Follow-up and education on equipment care with replacement information is typically non-existent.

Many patients cannot tolerate CPAP pressure; many find their mask uncomfortable, even painful. Many assume you provided the equipment needed and that is all there is.

Mask leak or pressure point soreness/pain is a common deterrent and reason for abandonment; yet, it can be a simple fix if patients knew they had mask choice or education on adjustment features.

Problems adjusting to CPAP pressure might be overcome with simple education about features like ramp therapy or expiratory pressure relief. Bi-level positive airway pressure therapy for patients on mid-to-high range pressures can turn an almost guaranteed failure in to a compliance success.

Offering humidification makes the CPAP experience much easier, but it is essential to explain temperature setting variables to avoid the discomfort of the “rain out” effect, which can be disastrous.

With education, HME providers have the ability to improve CPAP compliance substantially. Increased revenue created by compliant patients should more than justify the cost of basic patient education.

PREFERRED SCENARIO

To increase compliance, patients should receive a multi-level education process that includes:

• Apnea education — Provide a sleep apnea fact sheet. Sleepy people have short attention spans and poor memories; written instruction is important at this phase for the patient, the caregiver or family support system.
• Equipment education — It is prudent for HME providers to help create a prepared patient who will strive for compliance and return for future purchases both reimbursed and out of pocket. Don’t be afraid to offer non-reimbursable compliance aids, such as specialty bed pillows and tubing covers. A compliant patient is a return customer.
• Follow-up care — Provide and encourage a follow-up phone call during the first few weeks of treatment. Offer a monthly support group, and require attendance for the first six months.

Use this time to continue education to patients who are newly diagnosed and possibly struggling. This will let them know they are not alone and will give them the opportunity to ask questions and get answers. It is beneficial to all and saves time by addressing the common issues in a group setting.

If patients know you care about their success, this will endear them to your services and your products. Don’t underestimate the loyalty of today’s patient.

WHAT PATIENTS WANT TO KNOW

Today’s patients are hungry for information. It’s quite simple — they are tired and they want and need sleep.

In reality, no one wants to wear a mask strapped to their face with hurricane force winds blowing up their nose. Tell patients at the beginning of the session that the therapy may not be easy but you will help them through it. Let them know they have equipment options.

It’s the fear of the unknown that causes defeat, so make sure your patients are aware of the realities of what they should expect.

Based on patient feedback, I have compiled the following information as key elements that should be included in a fact sheet as part of the patient education process. In my experience, these are the facts that patients want and need to know.

WHAT IS SLEEP APNEA AND WHY DO I HAVE IT?

For most people, sleep apnea is for life and not a disorder that can be cured.

Obesity is not necessarily the cause for sleep apnea, and weight loss alone should never be considered a cure. OSA occurs because of physiological reasons, which might be any combination of the following factors: tongue size, airway size, jaw structure, tonsil/adenoid size, skeletal limitation, palatal soft tissue and obesity.

Explain to patients that an apnea episode means they stop breathing because something is obstructing their airway. Help them understand that an apnea is the complete cessation of breathing for 10 seconds or more and sometimes can even last over a minute.

Also explain that a hypopnea is an episode of reduced airflow (usually by one-third or more) often accompanied by a drop in oxygen saturation and/or a measured arousal in the brain. Emphasize that a diagnosis of mild, moderate or severe apnea should be taken seriously.

Tell patients that CPAP is the gold standard treatment that will keep their airway open and eliminate or greatly reduce their apnea and hypopnea episodes. Also provide information on auto CPAP and bi-level PAP therapy, so patients will know there are options if CPAP does not provide the level of treatment they need.

BEGINNING CPAP THERAPY

For most people, the adjustment period is challenging. The two common challenges are: 1) Finding the right mask for their face and getting used to wearing the mask during sleep; and 2) learning to adjust to the constant pressure of CPAP, and learning how to fall in to the natural rhythm of breathing while using continuous positive airway pressure.

Offer the following adjustment tips to your patients. Let them know the mask fits and seals differently when they are sitting or standing. They should perform a final mask fitting when they are ready to go to sleep.

With the machine turned on, patients should lie in bed in their sleeping position with the mask on and the headgear loosened. Then, instruct them to pull the straps slowly, just until they get a good seal. There is no need to over-tighten. A properly fitted mask should not cause pain or discomfort on the face.

To help patients get used to wearing a mask, have them use it while sitting in front of the television or while they are doing another activity. This will help them gradually get used to the CPAP and mask.

Encourage patients to build up their treatment time. It is important for them to know that it is better to use the treatment for part of the night than not to use it at all.

Discuss the importance of taking care of the CPAP equipment. It is an investment in their health, so patients should refer to their owner manuals for mask, tubing, machine care and replacement.

EDUCATION EQUALS COMPLIANCE

My years of experience have shown me that patients who know the facts regarding the devastating nature of apnea and the available equipment options and who receive follow-up support and education have the highest chance of successful compliance.

Don’t forget the “care” in home health care. Take care to create a prepared patient and you also create a future revenue stream.

Providing your share in the patient education process is not only fiscally prudent, it’s the right thing to do.

Quick Tips for Patients

• Rinse your mask cushion or nasal pillow inserts daily and allow them to air dry. Clean them weekly.
• The casing of your CPAP machine requires little care. Should it become soiled, wipe it with a damp cloth and towel dry.
• Your machine has filters that need routine replacement to provide optimum service. Check filters weekly, and if they are visibly dirty, replace them. Some machines have two distinct types: Foam filters can be gently hand-washed and reused, and the white fine filters are disposable.
• Your CPAP tubing should be cleaned weekly and replaced annually or as needed.
• Mask cushions are fragile and should be handled with care. They are meant to be replaced in a scheduled manner. After several weeks of use, mask leak may be your first indicator that your mask’s cushion needs replacing.
• If you use a humidifier, the water chamber should be emptied of any leftover water daily. Distilled water is preferred. Clean the humidifier chamber weekly.

Always fill the humidifier chamber away from the machine. Spilling water into the CPAP machine may cause permanent damage and void the warranty.

What Is Sleep Apnea?

The American Sleep Apnea Association offers a 17-minute video that explains, in lay terms, what sleep apnea is, what its consequences may be, how diagnostic testing is performed, different treatment options and how CPAP works. In the video, both people with sleep apnea and physicians answer commonly asked questions about the diagnosis and treatment.

In addition, viewers are likely to understand sleep apnea better by actually seeing a “graphic dummy” have hypopneas and apneas and by seeing someone undergo overnight testing and use CPAP than by hearing a verbal explanation or reading a pamphlet.

Nasca recommends making the video mandatory viewing for HME patients at initial set-up. For information about the patient video, visit the American Sleep Apnea Association Web site at www.sleepapnea.org.

Diagnosed with severe obstructive sleep apnea in 1989, Tracy R. Nasca is founder and senior vice president of Talk About Sleep, Burnsville, Minn. A patient advocate and sleep educator since the mid-1990s, Nasca can be contacted at [email protected].