A patient’s perspective on what sleep medicine professionals are doing well and what they could do better.
It is always fun to be the bearer of good news. I have been asked to write, from a patient’s perspective, about what sleep medicine is doing well and where it could improve.
Being a sleep disordered breathing patient is rarely easy. I was once a CPAP failure. When I was diagnosed with severe and profound mixed sleep apnea in 1989, I had a bad attitude about compliance. My doctor finally had to tell me that my choices were to get compliant, have a tracheotomy, or prepare to die—and die sooner than later.
It took this wake-up call to make me change my attitude, fight through the difficulties, and reach 100% compliance with a bilevel device. Successfully managing my sleep disorder so changed my life that I decided to dedicate myself to helping others accept their diagnoses and obtain successful therapeutic compliance.
Today I am a sleep apnea patient, a sleep advocate, and a partner in www.talkaboutsleep.com, a Web site I helped found in 1999 to aid sleep disorder patients. Through the Web site, I have had the opportunity to correspond with and counsel, on a patient-to-patient basis, thousands of people with sleep disorders. This gives me a unique perspective on how the sleep medicine field is serving its patients.
A New Type of Patient
Awareness of sleep disorders is on the rise. As it increases, we are seeing more demanding and prepared patients. One of the reasons for this can be attributed to the Internet as more people are going online to learn more about sleep. My Web site’s statistics show a tremendous increase in search engine referrals. We can also track point of site entry and follow the user’s navigation path. It is interesting to note that our users tend to enter into our basic sleep information section, take our questionnaire, and then proceed to a particular sleep disorder section. This means people are coming to sites like mine to investigate why they are having sleep issues, recognize symptoms in themselves, and choose a disorder category that pertains to them. Often, this activity leads to an e-mail or phone call to our offices in Burnsville, Minn, which is near the Twin Cites of Minneapolis and St Paul.
When somone with a possible sleep disorder asks us for help, we first and foremost encourage physician evaluation and diagnosis. We speak with hundreds of people every week and help encourage and create more prepared patients. With 16 million people in the United States who have sleep apnea but are not yet diagnosed, we all have our work cut out for us.
Patients are asking better questions. You can tell those that have researched their subject and are hungry for more information from those who have not. The latter group presents to us as depressed, frustrated, and with a defeatist attitude. It quickly becomes clear whether a patient has been educated about their sleep disorder by a medical professional. The good news is that many more people are presenting to us as well informed. The bad news is that there are still an alarming number of diagnosed patients who are struggling and frustrated in their search for CPAP compliance.
What Sleep Medicine Does well
As we have all heard, knowledge is power. The evolution of sleep medicine has been a learning process for us all, and we are advancing to keep up with the huge growth in the field in recent years. As I attend educational conferences across the country, I see attendance increasing. This tells me that we are all eager to learn and to keep abreast with the latest research findings and therapeutic compliance methodology. Sleep technologists, respiratory therapists, and durable medical equipment suppliers are realizing that taking the time to educate the patient during the diagnosis process, mask fitting, and machine delivery is a win-win situation. Set up patients properly with the first issue of equipment, spend some time educating them about the devastating nature of sleep apnea, and teach them how to use their prescribed equipment, and you will achieve a higher patient compliance success rate and receive fewer phone calls from sleepy, frustrated, unhappy patients.
The number of sleep laboratories that are now selling CPAP equipment also is on the rise to the tune of 21% growth in the past 12 months, according to a recent Wachovia Securities sleep laboratory survey. In many cases, sleep technologists are now charged with the responsibility of mask fitting, and, to do it properly you must become product experts, too. We are all evolving to meet the growing demand of this underdiagnosed and serious sleep disorder.
Suggestions for improvement
Do not underestimate today’s patients who are better educated and more interested in taking part in their therapy. Most patients diagnosed today are middle-aged or seniors who grew up on and expect good customer service. Avoid disappointing them. Deliver equipment with education—not doing so is a disservice to the patient who might then be doomed for failure or feel abandoned, both causes of giving up on CPAP and the medical professionals that prescribed the equipment. Patients are learning that they have choices. Provide them and you help create a win-win situation.
Each year, manufacturers are bringing us exciting new CPAP equipment features; keep your staff informed. Consider all equipment choices and then strive to meet specific patient needs at first issue of equipment. Inventory a wider selection of equipment choices and lose the mentality that one brand fits all. Never assume that you can choose a mask for a patient just by looking at his or her face; engage the patient in the choice process. Patients will feel more compelled to reach successful compliance if they are included in the process of choosing their masks and learning all the optional features of their flow generators. Provide your patients with an educational handout with trouble-shooting tips and information on equipment care and cleaning.
Some of the common complaints we receive from patients at Talk About Sleep include home health care providers never telling them:
• to call back if they have problems adjusting to CPAP;
• that masks should be replaced every 3 to 6 months;
• that tubing needs replacing;
• that filters in PAP machines need replacing (some patients do not even realize their units have filters);
• that snoring while on CPAP should not happen;
• that heated humidification is an option;
• that patients can change the temperature settings on their humidifiers;
• that patients might experience something called “rainout” due to condensation and how to eliminate it;
• that patients periodically need to change the water in their humidifiers;
• that patients need to clean their humidifier water chambers before mold appears;
• that they need to clean their masks;
• that they should never use the dishwasher to clean their masks;
• that patients should not duct tape their mouths shut since chin straps are available;
• that there is such a thing as a full-face mask for mouth breathers;
• that cheek bones should not be bruised because they overtightened the mask straps;
• that they should not have to live with red mask strap marks on their faces that do not go away until noon;
• that they might need to have future titrations with weight gain or loss or if old symptoms reappear; and
• that bilevel and auto-adjust PAP is available if they try hard and fail on CPAP.
When one hears complaints like these, it is no wonder there are so many CPAP failures. Patient care aside, think of the equipment business lost in repeat sales. Create a patient reminder system for replacement equipment, such as filters, tubing, and mask cushions. Create a follow-up system to improve patient failure rate and perpetuate your patient base. Remember that with first issue, most patients are overwhelmed with their diagnosis. The mere thought of having to sleep with a mask strapped to their faces, which is connected to a medical-looking machine, is hard. Remember, at diagnosis, your patients have memory loss, the inability to concentrate, and often depression. Informational handouts are much appreciated by sleepy people. A follow-up phone call is even better. This will allow patients to try CPAP for a few days and then hear back from you. Knowing that you care and that they have access to your wealth of knowledge is half the battle.
Take pride in the great number of people whom you have helped. I well remember the misery of my prediagnosis days and the miraculous recovery I experienced once I reached CPAP compliance. I could not have achieved it alone; I was helped along the way. Be that person in someone’s life. It makes what we do a true blessing.
Tracy R. Nasca is founder and senior vice president of Burnsville, Minn-based Talk About Sleep Inc, a Web site dedicated to helping patients with sleep disorders. In addition to educating patients through e-mail, phone calls, and public speaking appearances nationwide, she set up Advocates for Sleep, a patient-to-patient mentoring program, in 2003.
For more information about the Wachovia survey mentioned in the article, contact Michael Matson, senior analyst, at [email protected]