What extra data should I ask for from my sleep study?

[cby1]

I'll be seeing my new sleep doc on 12/7. What should I ask for from the study besides the 2 page summary they give you?

I've heard reference to summary sheets, breath traces, etc. I have no idea what or how much I can get - but maybe with more data, folks here will be able to see things the scorers/doc did not.

It doesn't give me a lot of confidence that the people who score it (per sleep tech) "work from home and are trained on the software". The lab outsources the sleep tech staffing and the scoring - the doctor then reviews what they scored, so I'm told.

Thanks.

[LSAT]

Besides getting a copy of your prescription, what else would you need?

[cby1]

I have seen people refer to other, more detailed readouts/data that may be interpreted, or may give a sense how the scoring was done, etc. As I said, not sure how much confidence I have in the scoring, given what I heard.

If there is nothing else worth getting, then OK - but it's mine if I want it, right? I just don't know what to ask for...

[chunkyfrog]

Just ask for the prescription to be for a FULL DATA machine.

[kteague]

I'm not sure what different pieces of the report are called. I've had several studies and have gotten everything from a short summary to graphs I never did a thing with. When most of us ask for a report, it is not with the purpose of catching scoring errors, it is to get detailed results. I personally think there's a value to having the results that break down the data like for sleep positions and sleep stages. If you ever are unlucky enough to have to go to another sleep doctor to review the prior collected data, they can send for the exact information they need. I've read on here that it has happened, but it's not usual. I personally think unless they tell you something with red flags or you have a particularly difficult case that you'll be fine with a report as discussed. Others on here might have a totally different perspective, so don't take my opinion alone without comparing thoughts. Whether you decide to get "everything" or not, I think you should store the possibility of a wrongly scored test in the very deep recesses of your mind to not be accessed unless there's a demonstrable need. An ever present doubt could make the adjustment phase more unsettling than it has to be. Hopefully you'll have garden variety OSA that responds to a treatment that becomes very routine.

[robysue]

When I've gotten my sleep study reports, they included the following things:

1) Doctor's written interpretation of the study (about 1 page)

2) One page of statistical summary data including:

• Sleep stage data: How long I slept in each stage, both in terms of actual minutes and in terms of percentages.
• Time at each pressure setting data on the titration studies.
• Respiratory disturbance data: Total number of apneas and hypopneas, with apneas classified as obstructive or central. Total number of events in REM sleep, in non REM sleep, and in supine sleep. On the titration studies, these are also broken down by each pressure setting.
• Calculated AHI numbers for REM, non REM, and supine sleep, together with an overall AHI. On the titration study, these are also broken down by each pressure setting.
• Number of PLMs and number of PLM arousals. Also a PLM index and PLM arousal index were computed.
• Number of spontaneous arousals in both REM and non-REM. Also a spontaneous arousal index.
• Some statistical data about my heart rate during the night

3) One page of summary graphs. All the summary graphs were scaled the same so that you could correlate the data in all graphs together. These showed the following:

• A hypnogram showing when I was in which stage of sleep all night long. This allowed me to determine when clusters of events happened to occur on my diagnostic studies.
• An "respiratory event table" similar to the one at the top of a SleepyHead daily detailed data page, but given the scale and the fact that it was black and white, it was not as easy to read. Still I could tell when my events occurred during the night and what each event was scored as.
• A "PLM event table" that showed when I had PLMs and whether they affected my right leg, my left leg, both legs, or leg(s) and arms.
• A SpO2 graph. Had I experienced any significant O2 desats they would have shown up on this graph.
• A "position graph" indicating what position my body was in all night long.
• A pressure curve which showed the pressure settings the tech used all night long. I could see when the tech chose to increase the pressure and tying it back to the event table made it easy to see why the tech increased the pressure each time.

I would have loved to have been able to have convinced my first sleep doc's office to give me the raw data for the diagnostic sleep study, but I was never able to do that. I would have loved to have had a printout of my flow rate data for the whole night, but I've never been able to get that on any of my sleep studies either.

[ChicagoGranny]

What should I ask for from the study besides the 2 page summary they give you?

That and a copy of your machine prescription. KISS.

It doesn't give me a lot of confidence that the people who score it (per sleep tech) "work from home and are trained on the software".

Properly trained and motivated, these people will do a better job than people who commute two hours per day, work in a tiny cubicle and deal with office politics.

[JDS74]

In addition to the list of data reported by RobySue, the sleep center does have a complete recording of all the data for the session. I asked for and received a DVD with all of the data together with the software needed to display it. Included was EEG traces. flow data, pressure data, PLM data, and, if I remember correctly, the video track of me sort of sleeping.

That's the plus side. The down side is that I didn't find it particularly useful but that's just me. The details that RobySue mentions were and are quite useful. Having that made it much easier to get reimbursed for my expensive ASV machine.

To get that sort of detail data, its likely that you will have to go to the sleep center and make a HIPAA request and pay a reproduction fee.

[cby1]

Good information, thanks to all.

I think I will request the pages Robysue mentioned - that sounds like the right level of detail. I may request the raw data and see how much pushback there is - but really, the list she detailed seems like what I want. I've always gotten higher-level, 1-2 pages summaries in the past. Missing some of what's in Robysue's list.

[Okie bipap]

If you ask for everything, you would probably get a package of paper like I got. My sleep study is 35 pages and my titration study is 19 pages. It's more than I really need, but when I asked for copies of my sleep studies, that is what they gave me. I had to pick them up from the hospital records department, not at the sleep clinic. My family care physician, the sleep doctor, the sleep clinic and the DME I used at first all are part of the health network owned by a local hospital.

[Huh?]

1) Doctor's written interpretation of the study (about 1 page)

2) One page of statistical summary data including:
Sleep stage data: How long I slept in each stage, both in terms of actual minutes and in terms of percentages.
Time at each pressure setting data on the titration studies.
Respiratory disturbance data: Total number of apneas and hypopneas, with apneas classified as obstructive or central. Total number of events in REM sleep, in non REM sleep, and in supine sleep. On the titration studies, these are also broken down by each pressure setting.
Calculated AHI numbers for REM, non REM, and supine sleep, together with an overall AHI. On the titration study, these are also broken down by each pressure setting.
Number of PLMs and number of PLM arousals. Also a PLM index and PLM arousal index were computed.
Number of spontaneous arousals in both REM and non-REM. Also a spontaneous arousal index.
Some statistical data about my heart rate during the night

Now really? You advise someone to take this list to the doctor and say it is wanted? The patient can ask for the summary of the sleep study, and he will get most, if not all of this. No doctor is going to provide a customized report - they are just going to provide what is their standard report.

3) One page of summary graphs. All the summary graphs were scaled the same so that you could correlate the data in all graphs together. These showed the following:
A hypnogram showing when I was in which stage of sleep all night long. This allowed me to determine when clusters of events happened to occur on my diagnostic studies.
An "respiratory event table" similar to the one at the top of a SleepyHead daily detailed data page, but given the scale and the fact that it was black and white, it was not as easy to read. Still I could tell when my events occurred during the night and what each event was scored as.
A "PLM event table" that showed when I had PLMs and whether they affected my right leg, my left leg, both legs, or leg(s) and arms.
A SpO2 graph. Had I experienced any significant O2 desats they would have shown up on this graph.
A "position graph" indicating what position my body was in all night long.
A pressure curve which showed the pressure settings the tech used all night long. I could see when the tech chose to increase the pressure and tying it back to the event table made it easy to see why the tech increased the pressure each time.

Much of this is included in a basic sleep summary report. Again, it would be ridiculous to take a list like this to a medical practice.

The best thing to do is ask for "a copy of the sleep study summary including any information you think would be helpful to me." You won't find a doctor who is going to customize something for an individual patient. The patient can ask simple questions about things that concern him. Sheesh.

[cby1]

I want that hypnogram - I want to know what stages occurred when and for how long. I have a few hypotheses (like delayed REM) that I'd like to investigate.

I want information on my sleep architecture - which I really can't get at home. This much % in this stage - that's not enough - I want to know when the stages occurred, and how many/how often.

That said, I may only get the "standard report". This doc seems a little more amenable though, based on past appts. We'll see.

[ChicagoGranny]

I want information on my sleep architecture

Some things to remember:

1. If you slept without CPAP in your study, your sleep architecture is going to be a mess and not be anything like a good CPAP-treated night will look like.

2. If it was a titration study, your architecture will be a mess until they get you to the point of optimized machine settings. Then, it may not be a typical architecture for you because you are likely sleep deprived.

3. If you start the night in the lab at optimal machine settings and use them all night, you still may not see your typical architecture. Many people sleep differently in the strange environment of a sleep lab as compared to the comfort of their own bedroom.

[robysue]

I want that hypnogram - I want to know what stages occurred when and for how long. I have a few hypotheses (like delayed REM) that I'd like to investigate.

I want information on my sleep architecture - which I really can't get at home. This much % in this stage - that's not enough - I want to know when the stages occurred, and how many/how often.

Summary graphs always include a hypnogram. Statistical summary data includes percentages of each stage, number of wakes, and latency to first REM cycle, but won't tell you exactly how long each REM cycle lasted. With the hypongram you'll have a visual representation that you can use to approximate things like length of each REM cycle.

In other words, ask for the summary graphs and statistical summary data, and you should get those things.

That said: CG is correct: The sleep architecture for a night in the lab may or may not be typical of what goes on at home in your own bed.

If the study was a titration study, it may provide some real insight into what your sleep looks like when you are NOT using the machine. Delayed REM and very small amounts of REM are pretty typical parts of the sleep architecture for many people with untreated OSA.

If the sleep study was a titration study, the hypnogram could be a mess in terms of whether it's really applicable to what happens at home in your own bed with the machine. As CG said, it takes time to optimize the settings, and until they do, you are still effectively sleeping with under treated OSA. Even so, there is usually some degree of improvement in terms of sleep continuity (i.e. it gets better as the pressure is increased and the number of events goes down) and there's often more REM than on the diagnostic sleep study, particularly if what little REM you got on a diagnostic sleep study was filled with apnea events. But unless you only need a small amount of pressure to treat the OSA, it's not uncommon for the first REM cycle to still be delayed since the pressure may well be suboptimal during most or all of the first sleep cycle.

And even if the study was done with the exact same settings that you use every night on a titration machine made by the same manufacturer as your home machine? There's still the chance that "lab effect" could show up. Lots of people find it much more difficult to sleep with all the wires attached and in a strange bed and potentially at a time that does not correspond well with your normal sleep cycle.

All that said, the hypogram on a sleep study still can be of use. In my case, the hypogram on my third sleep study was the most illuminating: I had self reported on the "how did you sleep" questionnaire that I though I got about 4 hours of sleep during the 6 hour time in bed window for the study. The data showed that I got just under 2 hours of sleep and that I had an extensive Wake after Sleep Onset episode that was at least twice as long as I thought it had been during the night. That WASO data was what convinced both me and the PA who was in charge of my care that I really needed serious help fighting the insomnia monster that had moved into my bedroom right after starting CPAP.

[cby1]

Good points, CG, esp #2. Seems like my logic is a casualty of something .

Titration study, and I subjectively slept "the same" in the lab - *but* - they were titrating, as you and Robysue point out. *Sigh*.