The perspective of one “inconsistent user:“ I would probably be considered an inconsistent user of CPAP, but it is due to the bulky equipment, feelings of being "tied" to the bed, and inability to tolerate air through [my] nasal passages. I use “Breathe Right“ strips and a nasal inhaler in concert with the CPAP and nasal pillows. Tried the mask, no way. Expelled air remains in mask and it is hard to breathe against this. I also suffered with sinus infections and couldn't use CPAP until they were cleared up. Sleep doctor does not recommend a humidifer but the Chat Group I talk with on AOL highly recommends it, as well as comfort flaps. Now I am hearing about a swivel fitting to the flex tube to let you move more freely. Is there any type of equipment where the tubing is like the oxygen nasal tubes used in hospitals, with no head gear? I am just now (4 months later) able to use the CPAP for 7 hours a night, and this has only been for the past few days. I do not suffer from daytime sleepiness any more which was the only problem I was aware of. I also suffer from cardiac arrythmias and high blood. In February 1998 I will find out if [my blood pressure] is under better control. I quit smoking and [I am] losing weight, 15 pounds so far. The equipment is the problem with inconsistent use, though, and the patient’s own feelings, claustrophobia, etc.

MY RESPONSES:

I agree with the first viewer, except I am not so surprised at a lack of effect for the personal support. For one thing, the groups are small to achieve statistical significance. Also, if there were only brief phone call from a relative stranger, without a trusting relationship, this would explain a lack of openness (for example, the patient concealing that he almost never used his CPAP) and a lack of real support. I have some additional suggestions to improve effectiveness of personal support: (1) Make sure that whoever is to do telephone follow-ups first sits down with the patient for a long enough period of time to show that he or she really wants to listen to what the patient has to say--that is, time not just spent asking questions and filling out forms. Assuming the patient has already seen the doctor, this follow-up person should ask the patient what he remembers, and fill in predictable blanks and misunderstandings. Every patient should get a short, to the point page of written instructions, not written in legalese like a consent, as well as longer literature, like brochures. (2) The same person should phone the patient DAILY for the first two weeks, making it clear on the phone that these are not expected to be quick "Check-ins to make sure everything's okay" but that problems are common and there is plenty of time to talk about them, or just chat about what's going on if the patient has no complaints. Common problems should be specifically probed for. (3) At the end of the first and second weeks, this person should make a home visit, inspect the equipment, ask the patient to explain and demonstrate how he is using it, how he cleans it, how it affects his and his partner's sleeping habits, etc. This visit should also include a "sit-down" when the person following the patient makes it clear that there is time and interest for hearing what the patient has to say. These services probably wouldn't fall to the doctor, but neither would a tech be best. Probably someone working close to the sleep center--a nurse, social worker, psychologist, physician's assistant, or even a volunteer lay assistant (such as the supportive old-timer referred to above) might all do this well. For certain professionals, the services might be billable to insurance as "psychotherapy." With regard to the second viewer’s comment about methodology, I agree that there are significant problems. One reason for these problems is that so little research has been done in this area, there has not been enough time for standards to develop. As much effort as this study must have taken, it is really more of a “pilot” study than a real test of either intervention. I am delighted to have the opportunity to post one person’s description of good home care they have experienced. Not only does this give the home care company a little well-deserved advertising, more importantly it lets others who may be receiving less optimal home care realize that fact, and demand more of their providers. To the remark, “A phone call just doesn’t cut it,” I say, “Amen!” The third viewer helps us understand how a person with determination can overcome a lot of obstacles to using CPAP, which without that determination could overcome her instead. It is, to say the least, striking that her doctor and home care person failed to provide her with the kind of information she had to get on-line from other apnea sufferers. The pointers that her peers provided are far from trivial: they maintain the hope that solutions to problems with CPAP exist, but take effort to find. This kind of support is what a person needs to get them through the initial period of adjustment without dropping out of treatment: not so much the solutions themselves, which may be premature and time-consuming, as the sense that there are many possible solutions. Perhaps the clinicians hesitate to mention them at the beginning for fear the patients will demand them right away. On the other hand, the use of humidifiers is so widespread and routine that the doctor who advised against it must have had some other rationale, such as aggravation of sinusitis by bacteria growing in the humidifer or tubing. To my knowledge, no such complication of CPAP has been documented; the notion is just speculation.

Do you have your own comments to add to discussions above? E-mail me at

kerrinwh@ix.netcom.com

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