Many of these are not new, but I want to list my support for them.
In my humble opinion as an OSA patient who struggled for months to get this crazy therapy to work, I believe that a newly diagnosed OSA patient shoulld have the following rights and expectations:
1) Any patient who undergoes an in-lab sleep test should be provided with a CD containing a copy of the raw data at the end of the test AND a complete copy of the written report (including the summary graphs) as soon as it is available; at the latest this should be at the next follow-up appointment with the doc.
2) A referral to a board-certified sleep doctor
who actually meets with patients and treats them.
3) A thorough examination of the upper airway by a sleep doc (or their PA or nurse practitioner) where the anatomical anomalies that may be causing or contributing to the OSA are both documented
and explained to the patient in clear language. A written summary of this examination with its findings should be provided to the patient at the end of the meeting.
4) A
written copy of the prescription for a
full efficacy data machine, heated humidifier, and mask of patient's choice. This prescription should be on official prescription paper with the prescriber's information on it. The "dispense as written" box should be checked so the DME cannot pull a switcheroo.
5) Full disclosure from the patient's insurance company concerning how the equipment is paid for and what the replacement schedule for the consumable supplies. At a minimum, the patient should know what the allowable amount for the equipment is, the patient's expected contribution, the insurance company's contribution, the terms of the sale (outright purchase or rent-to-own) for each item, and the replacement schedule for each consumable (filters, hoses, masks, and mask parts such as headgear, mask cushions, and nasal pillows). This information should be provided in writing and directly to the patient by the
insurance company as soon as the equipment is prescribed; the patient should NOT have to beg for this information or rely on the DMAE or sleep doc's office to obtain it.
6) A choice of DMEs. No newly diagnosed OSA patient should receive a call from a DME the've never heard of saying, "We've got your equipment ready. When can you pick it up? (Or When can we deliver it to your house?)
7) Quality patient education programs. And as BlackSpinner said, 10 minutes is NOT enough. These patient education programs need to cover a tremendous amount of material including, but not necessarily limited to:
- What OSA is and why OSA needs to be treated with some real information beyond "You quit breathing at night x-times an hour and you need a CPAP to minimize your risks for a host of comorbid conditions"
- Setting reasonable expectations concerning the adjustment period, when one might start feeling better in the daytime, and how much better one can reasonably expect to feel given the other medical conditions the patient is dealing with
- Using the CPAP machine itself---hands on instruction concerning such things as: patient control of exhalation relief, the ramp settings, and the humidifier and heated hose settings; connecting and disconnecting the humidifier from the blower unit; reading the data that is provided through the machine's LCD and hoe to make sense of that data
- Using the Mask---hands on instruction concerning such things as: choosing a mask, fitting the chosen mask(s) correctly at full pressure, properly dissembling and assembling the mask, cleaning the mask, when to replace mask parts, when to replace the entire mask, improving mask comfort with mask pads, mask liners, and pillow cozies, and what do do if the current mask just isn't working out
- Mask leaks and mouth breathing---what they are, how to use the data to determine if you are leaking when you are sound asleep and don't remember it, using anti-leak straps, chin straps, and taping, using a FFM or a hybrid mask for mouth breathing
- Common adjustment problems and strategies for dealing with them including aerophagia, red marks on the face, dry eyes, dry mouth, dry nose, sore nose, sore teeth, "can't seem to get to sleep", "keep waking up", sore/stiff neck or back from sleeping in a funny position, "darth vader noises" are bothering to the new PAPer or bedpartner
- When to call the sleep doc's office because the problems are not getting better or seem to be getting worse
- What to do if you find that you are feeling much, much worse after starting PAP
- Traveling with the PAP---what are your rights? how to make it easier?
- Options concerning what to do in power outages and what to do while camping
- Connecting with other CPAPers through on-line forums an face-to-face patient support groups
As this long list indicates, a proper patient education program may require meeting with (small) groups of patients several times over the course of, say, a three or four month period.
8) The ability to obtain the necessary software directly from the DME and/or the sleep doc's office. In an ideal world both the doc and the DME should be encouraging
all their patients to actively monitor the efficacy of their therapy. And those who want to should not be made to feel that they have to obtain the necessary software in a clandestine fashion. 'Twould be even better if the DMEs or the docs would provide some patient education workshops on learning what all that data means and hoe to interpret it.
9) The expectation that determining the
efficacy of the therapy will based on something more than just compliance data and the results of a one-night titration study---particularly when a patient self reports that CPAP seems to be them doing no good or is making their life miserable.
10) The expectation that OSA and CPAP difficulties will not be used to explain away numerous patient symptoms that persist long after the patient has become genuinely compliant with therapy that is known to be effective---i.e. the patient sleeps with the mask
every night, all night long and the PAP machine's data indicates the leaks are under control and the AHI is consistently below 5.0
