Experiences in Diagnosis and Treatment Verification

[trailrider]

I am curious how practices differ by location/nation/rules for diagnosis and verification that the proposed treatment works.

Here in Ontario, it was a 2 step process (ok maybe 3 or 4):

Step 1. Sleep study in lab, monitors your "natural" sleeping condition.
Based on the AHI, RDI, and initial titration results, the doc recommends a therapy and provides a list of DME providers you can visit.

Step 1.5 Pick a DME and visit with your prescription. DME kits you out with a loaner machine and mask and you try to sleep with your new therapy. Call and discuss with them to get things working and feeling ok.

Step 2. About 30-60 days later, you go in for a 2nd sleep study, this time with your mask. During your sleep they confirm the pressure settings (titration). Doc later writes out a complete prescription (xPAP, pressures) and sends correspondence to the DME for initiating health coverage forms (OHIP).

Step 2.5 Meet with DME and return loaner. Pick up new machine and mask. Fill out forms. Pay excess that OHIP doesn't cover, submit forms to other insurer for balance. Decline the extra monitoring service for $30/month.

The point is, we go through a diagnosis study, and then a verification study at a sleep lab. Do you folks from other places get both assessments?

What is done for follow-up afterwards? Biannual, 5-ennial verifications?

For info, if I recall correctly, OHIP covers $700 towards your machine. You, or your private insurer picks up the rest. OHIP will agree to APAP if and only if the difference between max and min levels is greater than 5.

[justMongo]

A "fellow" engineer" -- glad to meet you.
In the US, my process was: 1) Split night study in sleep lab with verification of severity of Sleep apnea; and titration of pressure.
2) Sent next door to a DME and issued an S8 machine and mask. I'm on US Medicare ; and they pay for a 13 month rental when the machine becomes property of the patient. DME tries to maximize profit by issuing a machine that is nearly obsolete; and may be used.
3) 6 month follow up visits with the doc. he spends 3 minutes and asks how are you, then exits the room.

Sometimes the study is a two night study; but I've not heard of a 2nd study at 30 to 60 days.

My DME insists I must have my Rx renewed by the doc every 6 months to receive supplies paid for by Medicare -- I think they are lying.

I updated my machine to an S9 by paying out of pocket.

[OpalRose]

Trailrider and Just Mongo,

I have been wondering the same thing. It becomes hard to advise someone who asks about procedure when it seems to be different not just from Country to Country, but also within the Unired States.
My process was:
1). Split night study in sleep lab.
2). Sleep Lab sends report to Sleep Dr/Pulmonogist, then I would see that Dr. to get results.
3). Sleep Doc. discuses my options/machine choice and writes Script accordingly.
I am told to find a DME and they would fax script.
4). It takes DME 2 weeks to get script and get the machine. I then have to make appt. with DME.
5). At appt., DME sets my machine up, offers me two choices in masks with a 30 day trial.
6). Follow up with Doc. at 90 days. DME doesn't seem to care if they ever hear from me again.
7). Doc. saw me for 5 minutes, asked how I felt, didn't care to see the reports I printed out.
He just said it was unheard of that my AHI was so low. It was 2.8. HUH?
8. Doc. said to come back in a year at 30 lbs. lighter.
9. DME said my script was good indefinitely.

Ok, now I'm tired just thinking about it!

OpalRose

[Crimson Nape]

Hi taileider!
My study wasn't that involved. I went for the initial study, went back for a titration study and then was notified by my doctor to come get my CPAP. So far, I've never dealt with a DME, at least knowingly. After that, I only submit compliance reports.

My only advice, based on stories of other members dealing with a DME, is to check the run time on you new unit that they give you in 30-60 days. It should be at or near "0"(zero). I actually don't know what the upper time limit would be. I hope another member can answer that question.

-SG

[Homerec130]

Had a sleep study to determine if I had SA and then came back a week later for the titration study. Two weeks later, had to go go to my DME and pick up my machine. Got a call from them every month asking if I was using the machine and how many nights with at least 4 hours. Never got any parts from this DME. At about the 6 month point, found they had liquidated. I later got a card from the folks that took over the old company asking me to call them to talk about my treatment. Even though I told them had changed DMEs they said no problem. We just want to make sure you are getting the treatment you need and deserve (don't remember the name of the company that took over).

Talked to my sleep doc (also my ENT) and he set up a new titration study. Sleep study used the type of mask I was interested in and we went from there. Get a card every three months from the DME asking me what I need and if I have any problems or questions. DME also gave me a copy of all the reports the Dr sent them as well as all their paperwork in regard to the machine. See my sleep doc once a year and I always bring my Sleepyhead page one report with me.

My Dr made sure I got a good machine as my prior one was a brick (but still good for an emergency backup).

I think all in all I have a positive experience in my treatment and evaluation.

Homer

[trish6hundred]

Hi trailrider,
I had 2 sleep studies because at the first one, I didn't get to sleep in time to check much. So I went back and had the second one to get fitted with a mask and a machine.
Then, I had a DME come to my house with the machine and set all of it up., (a Respironics DS200S, which had a smartcard,) and a Respironics ComfortJell nasal mask. I later purchased the machine I have now.

[DeepBreathing]

It seems to vary a lot here in Oz. In my case I was referred by a cardiologist who works at an outfit called Cardio Vascular Services. She sent me to Cardio Vascular Diagnostic Services for stress tests etc, then to Cardio Vascular Sleep Services (notice the pattern here) for the sleep test.

The sleep test was a one night all diagnostic with no titration. It started out with a whole battery of standard medical tests (heart, blood pressure, lung capacity etc) then wired up with all the tubes and electrodes and off to sleep. In the morning I was told I had an AHI of 62, about 50% being central apnea. I was immediately given a Resmed S9 Autoset and mask, with pretty good instructions on how to use them, and a follow up appointment for a week later. Up to this point everything was covered by Medicare and / or Medibank Private.

At the follow up, they explained the process: I would be provided with a machine (S9 Autoset) which I would keep for a month, with weekly follow up appointments. It started out on a setting of 4 - 20, which would be tweaked every week to home in on an ideal setting. This process would cost $360 of which Medibank Private reimbursed 50%. And the $360 would be deducted from the cost of the machine if I buy it from them.

The four weeks turned into seven, getting a lack of response with the Autoset and trying the PR Bipap ASV, then finally settling on a Resmed VPAPS Adapt which worked well. Each week I took in the machine so the therapist could download the data. I also took in the Sleepyhead charts - she was really interested in Sleepyhead, having not seen it before. There was no extra cost for the additional three weeks of consultations.

I thought about importing a machine from the states but the price difference for the VPAPS between Oz and US was minimal, and they threw in some sweeteners like free mask, five year warranty and free consultations every six months for five years - which I doubt I'll ever use.

I paid cash for the machine and got a refund of a measly few hundred dollars from Medibank Private. I would have got more money back for homeopathy!!

Overall I think this was a great process, and much better than having a single test for both diagnosis and titration. Having everything done by the one company was certainly convenient for me, and probably quite lucrative for them. Not having to shuffle between doctors, DMEs and the insurance company was a major benefit. The main downside is the pathetic amount of cash benefit from the insurance and the fact they don't cover consumables.

[PaytonA]

My experience was actually quite simple. My cardiologist came up with the initial diagnosis and referred it to my PCP, a family practitioner who made the arrangements with the DME for the VPAP Auto. The recommendation from the sleep lab was for a bilevel. I picked up the Resmed S8 VPAP auto and the RT showed me the basics and that was the last I heard from anyone except the DME would call when they thought they could sell some supplies.

Best Regards,

PaytonA

[Sleeprider]

I had a sleep study in 2008 following referral by my PCP and examination by an ENT endoscopy. Severe apnea was diagnosed with the recommendation for an auto-titrating CPAP based on intolerance of the sleep lab condition. I started using the Remstar Auto APAP in April 2008 and learned how to read the data in Encore, and self-titrated. Forums were pretty helpful as information sources.

I eventually quit going to forums as too many people were obsessed with apnea, machines and hygiene, and I couldn't relate. Got back into the forum scene late last year as I upgraded my equipment and realized I might be able to help.

[truetopath]

For me the process was simple. I called my PCP said "hey I think I have sleep apnea and here's why..." He said ok let's order a sleep study. Went on a Wednesday for a split night study, PCP called me Monday and told me I had sleep apnea and asked where to send the script. I gave him the DME I wanted and I had my setup Tuesday evening. As far as follow up, I called my DME today (28 days later and told them my compliance info.) and they will send it to my doc. No further follow up needed, just call if my symptoms change or return. I guess I'm one of the lucky ones.