"please keep me updated about oximeters "
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Mike started a discussion about this at http://www.sleepguide.com/forum/topics/npr-web-chat-on-sleep-apnea .
The issue here is sleep doctors and other medical professional and DMEs who believe you should follow their instructions blindly and let them control your therapy. There is a rapidly growing body of well-informed patients who are proving they can make big improvements in their therapy by being fully involved. A major aspect of being fully involved is having a fully data-capable machine (and better yet the manufacturer's software) to monitor apneas, hypopneas, snores, and mask leak. To improve their therapy, these patients are making adjustments to their CPAP settings.
With a little experimenting with settings and monitoring the results, most of us have made significant improvements in our therapy.
What do you do when you are faced with a medical professional who doesn't want you to be so involved and does not want you to change your settings? I am proposing the statement below as a "battle cry" to be presented over and over to these professionals by their assertive patients.
"Sleep doctors and other sleep medical professionals need to come out of the dark ages for their own sake and that of their patients.
The market is moving in the direction of patients being fully involved in their therapy. Look at how medical professionals treat diabetes. They educate and empower their patients. Their patients take blood samples; read blood glucose levels; interpret the results; adjust their medications; give themselves injections of insulin (!); and adjust their diet and exercise.
CPAP is much simpler and less invasive than diabetes treatment, but just as important to good health. Educate your patients. Encourage them to learn how to read data from their data-capable CPAP machines. Empower them to prudently modify their CPAP settings.
You jeopardize your medical practice by letting your patient base become frustrated and hostile toward your "gold standard" sleep apnea treatment. Don’t be left behind. Empower your patients to take control of their own therapy and improve their lives."
I had to quit my first sleep doctor because he and his associates were adverse to patients with this attitude. I am happy to say that I found three other doctors who are comfortable with me being responsible for my own therapy and making changes to my CPAP machine settings.
Regards,
The issue here is sleep doctors and other medical professional and DMEs who believe you should follow their instructions blindly and let them control your therapy. There is a rapidly growing body of well-informed patients who are proving they can make big improvements in their therapy by being fully involved. A major aspect of being fully involved is having a fully data-capable machine (and better yet the manufacturer's software) to monitor apneas, hypopneas, snores, and mask leak. To improve their therapy, these patients are making adjustments to their CPAP settings.
With a little experimenting with settings and monitoring the results, most of us have made significant improvements in our therapy.
What do you do when you are faced with a medical professional who doesn't want you to be so involved and does not want you to change your settings? I am proposing the statement below as a "battle cry" to be presented over and over to these professionals by their assertive patients.
"Sleep doctors and other sleep medical professionals need to come out of the dark ages for their own sake and that of their patients.
The market is moving in the direction of patients being fully involved in their therapy. Look at how medical professionals treat diabetes. They educate and empower their patients. Their patients take blood samples; read blood glucose levels; interpret the results; adjust their medications; give themselves injections of insulin (!); and adjust their diet and exercise.
CPAP is much simpler and less invasive than diabetes treatment, but just as important to good health. Educate your patients. Encourage them to learn how to read data from their data-capable CPAP machines. Empower them to prudently modify their CPAP settings.
You jeopardize your medical practice by letting your patient base become frustrated and hostile toward your "gold standard" sleep apnea treatment. Don’t be left behind. Empower your patients to take control of their own therapy and improve their lives."
I had to quit my first sleep doctor because he and his associates were adverse to patients with this attitude. I am happy to say that I found three other doctors who are comfortable with me being responsible for my own therapy and making changes to my CPAP machine settings.
Regards,
Views: 1998
Replies to This Discussion
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Permalink Reply by Banyon on
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Here is a comment made today on another internet forum:
"......... the Sleep Lab called to ask how things were going and I cautiously asked how the doctor reacted to my reprogramming the machine from straight BiPAP to auto. To my surprise he thought I had done great job. The tech from the lab said that many people end up reprogramming their machines."
The industry is changing. Many confident professionals are happy to see empowered patients improving on what can be done in their sleep labs.
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Permalink Reply by Judy on
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I quote: "...such devices are required by federal law to be operated under the supervision of a practitioner licensed by law to direct the use of such device ..." and I stress "under the supervision" in bold. Where does it say the patient can not make adjustments "under the supervision of"? IF these so-called sleep specialist prima donnas would provide that supervision and interest in their patients ..... when we are abandoned by the sleep profession we do what we gotta do - or we give up and toss the xPAP in the closet (or AT the local DME supplier *wicked grin*).
And Duane, you said: As far as someone adjusting CPAP levels without a sleep study? NO. I don't think that is a good Idea. I'm inclined to agree w/in limits. APAPs can only report data on OSA events, there are many other sleep disorders and detecting them and their cause does require a good PSG.
However, you also stated: don't let me get sterted about how bad auto Cpap machines are.....they dont work at all !!! You can be proven WRONG on this statement a 1000 times over at the cpaptalk.com apnea support forum (currently the largest and most active on the net) and thru peer-reviewed, medical journal articles to substantiate their efficacy and value.
Rocky, you asked: "How did this get to be such an emotional issue that the suggestion of disclosure raises such ire?" Experience what the so many apnea patients encounter w/the sleep doctors and the local DME suppliers and you wouldn't have to ask that question!!! Just read the experiences those in these apnea support forums have encountered!! The local DME suppliers, especially, are what drove so many to these apnea support forums to being with - in self-defense!!!! You're a good one, but not all CPAP clients are that lucky!!!
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Ach! I can't let this go. Look I've been told by a sleep doctor that I "ask too many UNNECESSARY questions". I've been told by a sleep doctor that my questions "are irrelevant". I've been told by a local DME supplier's RT that the Resmed S8 Elite w/EPR didn't have a detailed/advanced patient menu & "couldn't report any useful data", that Medicare would NOT pay for a replacement nasal cushion I needed, that Medicare wouldn't pay for .... and on and on. Of course, I provided that RT w/the PROOF IN WRITING from the Medicare CMS website what Medicare would pay for, the HCPCS code for it and the interval. I provided PROOF IN WRITING from the Resmed USERS Manual. The ditz only knew how to use the Quick SetUp Guide - barely - and never bothered to even glance at the Clinicians Manual. I've been handed a Respironics pre-M Series RemStar Plus w/o even a data card slot and told that it WAS fully data capable and what the sleep doctor scripted. I had a copy of my script: it stated quite clearly "RemStar M Series Pro w/C-Flex". Should I continue? And that was all from just TWO local DME suppliers' RTs. Fortunately, my secondary insurance allowed me the opiton of THREE local DME suppliers and the third has been very good to me. And they do NOT try to BS me. If they don't know the answer to a question they know they are better off telling me they don't know than trying to give me a snow job. I can respect an honest "I don't know". ESPECIALLY if they help me find the answer to the question. But even if they don't. At least they were HONEST.
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As a newbie at this and STILL waiting to get my machine, I wonder - is it possible to cause damage to the body by adjusting the machine too high? If so, I think that one should be well informed before they start adjusting things on their own - lots of research and much info from a competent md or tech, such as how high is too high, what kind of damage can occur and wht are the signs and symptoms of a problem, etc. If it's all about the $ for the person who is doing the "supervising" then maybe it is time to find someone else to "supervise" therapy.
As for the comment about diabetics self adjusting meds - this is done (or should be!!) only within the limits of what parameters are set by the physician supervising care. Most of these are done only after careful and controlled observation - i.e. what causes spikes, lows, reactions due to illness, etc. The use of a self adjusting pump has greatly increased accuracy and control for many severe diabetics, with the added bonus of increased portability and freedom.
As I said earlier - I am new at this. I would not be comfortable making my own adjustments without extensive study and without being well informed. That said - for those of you who have been doing this for a while - more power to you! I hope to be comfortable enough with my treatment in the future to follow in your footsteps. For now, I'll be glad to GET my machine and start using it.
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Sure, Patrick, I'll be glad to post the links to the abstracts of those articles for you. Its simple enough to do a PubMed search on the subject.
The information from the personal experience of individual apneans at cpaptalk.com doesn't deserve to be just roughly discarded and ignored but I understand the comfort some get from med journal articles as well. I rely on them often myself for several health "topics".
Pardon me whilst I giggle a bit, but I haven't made it to Queen of anythng yet. And certainly not Queen of CPAP. Good on you for keeping informed w/your xPAP and your health!!! That's what we all should be doing.
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Okay, sorry for the delay. I had to check on dinner - and did spend a little time trying to find where I came back like you "were an idiot" to one of your posts. I wanted to rectify the situation if I could.
Anyway, here's just a quick PubMed result:
1] Otolaryngol Head Neck Surg. 2003 Mar;128(3):353-7.
Nonattended home automated continuous positive airway pressure titration: comparison with polysomnography.
Woodson BT, Saurejan A, Brusky LT, Han JK.
Department of Otolaryngology and Communication Sciences, Medical College of Wisconsin, Milkaukee 53226, USA. bwoodson@mcw.edu
OBJECTIVE: Automatic adjusting nasal continuous positive airway pressure titration (APAP) has been introduced as an alternative method of establishing pressures for patients with sleep apnea. The performance and accuracy of APAP in nonattended home environment are controversial. This study assessed APAP polysomnographic outcomes and accuracy in a nonattended home environment. STUDY DESIGN AND SETTING: We conducted a retrospective consecutive case series of 24 consecutive patients who had nonattended APAP and simultaneous full polysomnography (PSG). RESULTS: APAP was tolerated and reduced obstructive Apnea-Hypopnea Index (AHI) to <10 events/h in all patients. Mean AHI decreased from 38.4 (21.2) to 5.9 (6.6) events/h. Central apneas worsened in one patient. A therapeutic pressure was determined in 91% of patients. Autoset accurately measured residual AHI compared with PSG (R = 0.77, P < 0.001). APAP overestimated the AHI by 1.4 events/h. CONCLUSIONS: Nonattended APAP is successful in many patients in determining a therapeutic positive pressure setting. Reported AHI via Autoset is similar to that of PSG. SIGNIFICANCE: APAP reduces AHI and is tolerated in a nonattended environment.
PMID: 12646837 [PubMed - indexed for MEDLINE]
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2] Sleep. 2006 Nov 1;29(11):1451-5.
Comparison of CPAP titration at home or the sleep laboratory in the sleep apnea hypopnea syndrome.
Cross MD, Vennelle M, Engleman HM, White S, Mackay TW, Twaddle S, Douglas NJ.
Department of Sleep Medicine, Royal Infirmary of Edinburgh, Scotland, UK.
STUDY OBJECTIVES: Continuous positive airway pressure (CPAP) for the treatment of obstructive sleep apnea hypopnea syndrome (OSAHS) is conventionally started after in-laboratory overnight titration. This use of sleep laboratory space is both costly and limits access for diagnostic studies. This study aimed to evaluate whether automated CPAP titration in the home produced patient outcomes equal to those following laboratory-based automated CPAP titration. The main outcomes were Epworth Sleepiness Scale score, objective daytime sleepiness (Oxford SLEep Resistance test or OSLER test), and CPAP use; we also performed quality-of-life questionnaires: Functional Outcomes of Sleep Questionnaire and SF-36. DESIGN: Prospective, randomized, single-blind, parallel-group, controlled trial SETTING: Regional sleep center and patients' homes. PATIENTS: Two hundred CPAP-naïve patients with OSAHS requiring CPAP treatment. INTERVENTIONS: One hundred patients were randomly assigned to a standard 1-night in-hospital CPAP titration and 100 to 3 nights' home CPAP titration and then issued with fixed pressure CPAP. Data were analyzed on an intention-to-treat basis. MEASUREMENTS AND RESULTS: The patient groups did not differ at baseline. The CPAP pressures defined at titration (mean+/- SEM: 10.6+/-0.2, 10.4+/-0.2 cm H20, p = .19), number of mask leaks, and initial acceptance rates were similar in the sleep-laboratory and home-titrated groups. At 3-month follow-up, there was no significant difference in CPAP use (mean+/-SEM: 4.39+/-0.25, 4.38+/-0.25 h/night; p > .9), Epworth Sleepiness Scale score (9.5+/-0.5, 8.5+/-0.5, p = .14), OSLER, Functional Outcomes of Sleep Questionnaire, or SF-36 between the sleep-laboratory and home-titrated groups. CONCLUSIONS: Home-based automated CPAP titration is as effective as automatic in-laboratory titrations in initiating treatment for OSAHS.
PMID: 17162992 [PubMed - indexed for MEDLINE]
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3] Ann Intern Med. 2007 Feb 6;146(3):157-66.
Comment in:
ACP J Club. 2007 Sep-Oct;147(2):45.
Ann Intern Med. 2007 Sep 4;147(5):350; author reply 350-1.
Evid Based Med. 2007 Oct;12(5):148.
Diagnosis and initial management of obstructive sleep apnea without polysomnography: a randomized validation study.
Mulgrew AT, Fox N, Ayas NT, Ryan CF.
University of British Columbia and Vancouver Coastal Health Research Institute, Vancouver, British Columbia, Canada.
BACKGROUND: Polysomnography (PSG), despite limited availability and high cost, is currently recommended for diagnosis of obstructive sleep apnea and titration of effective continuous positive airway pressure (CPAP). OBJECTIVE: To test the utility of a diagnostic algorithm in conjunction with ambulatory CPAP titration in initial management of obstructive sleep apnea. DESIGN: A randomized, controlled, open-label trial that compared standard PSG with ambulatory CPAP titration in high-risk patients identified by a diagnostic algorithm. SETTING: A tertiary referral sleep disorders program in Vancouver, British Columbia, Canada. PATIENTS: 68 patients with a high pretest probability of moderate to severe obstructive sleep apnea (apnea-hypopnea index [AHI] >15 episodes/h) identified by sequential application of the Epworth Sleepiness Scale (ESS) score, Sleep Apnea Clinical Score, and overnight oximetry. INTERVENTION: Patients were randomly assigned to PSG or ambulatory titration by using a combination of auto-CPAP and overnight oximetry. They were observed for 3 months. MEASUREMENTS: Apnea-hypopnea index on CPAP, ESS score, quality of life, and CPAP adherence. RESULTS: The PSG and ambulatory groups had similar median BMI (38 kg/m2), age (55 years), ESS score (14 points), and respiratory disturbance index (31 episodes of respiratory disturbance/h). Each episode is determined by a computer algorithm based on analysis of oxygen saturation measured by pulse oximetry. After 3 months, there were no differences in the primary outcome, AHI on CPAP (median, 3.2 vs. 2.5; difference, 0.8/h [95% CI, -0.9 to 2.3]) (P = 0.31), between the PSG and ambulatory groups, or in the secondary outcomes, ESS score, Sleep Apnea Quality of Life Index, and CPAP. Adherence to CPAP therapy was better in the ambulatory group than in the PSG group (median, 5.4 vs. 6.0; difference, -1.12 h/night [CI, -2.0 to 0.2]) (P = 0.021). CONCLUSIONS: In the initial management of patients with a high probability of obstructive sleep apnea, PSG confers no advantage over the ambulatory approach in terms of diagnosis and CPAP titration. The ambulatory approach may improve adherence to treatment. When access to PSG is inadequate, the ambulatory approach can be used to expedite management of patients most in need of treatment.
PMID: 17283346 [PubMed - indexed for MEDLINE]
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4] Respiration. 2007;74(3):279-86. Epub 2007 Feb 23.
Comment in:
Respiration. 2007;74(3):276-8.
Automatic pressure titration with APAP is as effective as manual titration with CPAP in patients with obstructive sleep apnea.
Fietze I, Glos M, Moebus I, Witt C, Penzel T, Baumann G.
Center of Sleep Medicine, Charité-Universitatsmedizin Berlin, Berlin, Germany. ingo.fietze@charite.de
BACKGROUND: The optimal approach to initiate positive-pressure therapy in patients with obstructive sleep apnea is still debated. Current options are autotitrating positive airway pressure (APAP) or manual titration with continuous positive airway pressure (CPAP). Procedures differ by parameters and by algorithms used for adapting pressure. OBJECTIVES: To evaluate the efficacy of attended automatic titration in a randomized crossover study compared with manual titration over 2 nights where the sequence of the titration mode was changed. Therapy outcome was controlled after 6 weeks. METHODS: 21 sleep apnea patients were treated using manual CPAP versus automatic APAP titration. The mode used during the 2nd night was continued for 6 weeks. Cardiorespiratory polysomnography, Epworth Sleepiness Scale (ESS), SF-36 score and compliance were assessed. RESULTS: Apnea-hypopnea index reduction was equally effective at similar effective pressure independent of the titration mode. If APAP was applied during the 1st night, total sleep time was longer (384 vs. 331 min, p < 0.01) and sleep efficacy was higher (91 vs. 81%, p < 0.01) than after starting with manual titration with CPAP. Compliance was comparable in both groups (4.6 +/- 1.9 h). The ESS improved in both groups (from 12.9 to 6.5). SF-36 scores and therapeutic pressure did not much change. CONCLUSIONS: Taking the sequence of titration into account, we found equal effectiveness of CPAP and APAP. Sleep quality was better with initial application of APAP - which favors attended automatic titration if only 1 titration night is possible. Both modes are comparable after 6 weeks regarding therapeutic pressure, efficacy, compliance and quality of life. (c) 2007 S. Karger AG, Basel.
PMID: 17337881 [PubMed - indexed for MEDLINE]
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5] Sleep. 2008 Oct 1;31(10):1423-31.
Portable monitoring and autotitration versus polysomnography for the diagnosis and treatment of sleep apnea.
Berry RB, Hill G, Thompson L, McLaurin V.
Malcom Randall VAMC, Gainesville, FL, USA. sleep_doc@msn.com
STUDY OBJECTIVES: To compare a clinical pathway using portable monitoring (PM) for diagnosis and unattended autotitrating positive airway pressure (APAP) for selecting an effective continuous positive airway pressure (CPAP) with another pathway using polysomnography (PSG) for diagnosis and treatment of obstructive sleep apnea (OSA). DESIGN: Randomized parallel group SETTING: Veterans Administration Medical Center PATIENTS: 106 patients with daytime sleepiness and a high likelihood of having OSA MEASUREMENTS AND RESULTS: The AHI in the PM-APAP group was 29.2 +/- 2.3/h and in the PSG group was 36.8 +/- 4.8/h (P= NS). Patients with an AHI > or = 5 were offered CPAP treatment. Those accepting treatment (PM-APAP 45, PSG 43) were begun on CPAP using identical devices at similar mean pressures (11.2 +/- 0.4 versus 10.9 +/- 0.5 cm H2O). At a clinic visit 6 weeks after starting CPAP, 40 patients in the PM-APAP group (78.4% of those with OSA and 88.8% started on CPAP) and 39 in the PSG arm (81.2% of those with OSA and 90.6% of those started on CPAP) were using CPAP treatment (P = NS). The mean nightly adherence (PM-APAP: 5.20 +/- 0.28 versus PSG: 5.25 +/- 0.38 h/night), decrease in Epworth Sleepiness Scale score (-6.50 +/- 0.71 versus -6.97 +/- 0.73), improvement in the global Functional Outcome of Sleep Questionnaire score (3.10 +/- 0.05 versus 3.31 +/- 0.52), and CPAP satisfaction did not differ between the groups. CONCLUSIONS: A clinical pathway utilizing PM and APAP titration resulted in CPAP adherence and clinical outcomes similar to one using PSG.
PMID: 18853940 - indexed for MEDLINE]
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Permalink Reply by sleepycarol on
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Thanks for taking the time to find these reviews Judy.
I for one appreciate you being here and taking the time to post.
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I know that, SleepyCarol, and I thank you for that. But, still, I "am" JUST a "patient". I'm NOT infallable AND I "can" get carried away at times. I don't ever mean to offend - but - hey! It can happen. Especially when I read oft repeated BS spouted by some local DME suppliers or sleep "professionals" that have been proven to be untrue.
I'm kinda proud of the spread of those articles: 2003 to 2008 and Wisconsin, Scotland, British Columbia Canada, Germany and Florida.
Just today RestedGal presented a thought-provoking opinion on the "less than truths" so often spouted by these local DME staffers and Rts over at cpaptalk.com .... now, if ever, there were a Queen of CPAP I would DEFINITELY have to nominate RG!!!! She's one savvy lady.
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I think it is very important for both groups to have a voice here on the forum. It seems though we both get a tad touchy over things -- as my adminstrator told me yesterday -- I can get defensive and not even be aware of it.
The sleep professionals need to understand that if they are reading here on the forum -- they have a taken a huge step in learning about the frustrations that end users have to deal with. We need to realize that to protect themselves they have to take the stand that they do or risk being held liable for someone's stupidity.
Many of us here on the forums that are active have come here because we have had NO other place to turn to and have been burnt by the so-called sleep specialist, RTs, sleep techs, etc. and we just want to be treated like we have a brain.
I never saw my sleep doctor -- except do know the insurance paid him big bucks to read my data on both sleep studies I have had done. I am sure all he did was to interpret the sleep techs notes and it is kind of a bummer that he got several hundred dollars for his time to do this. My PCP tells me that I know as much or more than she does about sleep apnea and certainly know more than her about the data, software, machines, etc. The first DME I used out and out lied to me and treated me like I was two year old and when I caught them in their lies they twisted it like I was crazy. This WAS a small mom and pop local DME. Gave me a M series Plus INSTEAD of what the doctor had ordered for me. Okay, I am TOLD I can't change pressures but when the DME, whom you are supposed to trust to know what they are doing, is handing out machines that are NOT prescribed and REFUSE to give you the scripted machine -- who is in the wrong? Of course they are. When they wouldn't follow the doctor's script I changed DME's to Lincare. I was able to get the correct machine from them. Follow up with them has stank as there hasn't been any. They have very limited mask selection (at least in our local office) and do not take kindly to questions about other masks other than what they choose to give you.
I know for a fact my treatment would be ineffective today if I hadn't been proactive and learned from various forums and websites how to successfully treat my sleep apnea.
If the sleep professionals will respect us -- those of us that are proactive -- we will respect you. Just don't tell us how wrong we are in being proactive. We should be here to help each other understand what it is like on the other side of the fence. As they say don't talk the talk until you have walked the walk.
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Permalink Reply by Mike on
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my position is that there are multiple beliefs on the issue that are passionately held by different parties with different interests and experiences. i want both sides to present their perspectives/make their cases, and for us patients to take in the total mix of information, and, as adults, make decisions for ourselves whom to believe and what advice we will rely upon. but having the open and respectful exchange of information is key. if RTs/sleep professionals know of reasons why it's harmful to self-adjust, let those reasons be known. likewise, we patients need to make our grievances known with the traditional approaches to CPAP diagnosis/treatment.
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Here's a couple more articles about APAPs
Link to a study that concluded, "yes."
"Can Patients with Obstructive Sleep Apnea Titrate Their Own Continuous Positive Airway Pressure?"
http://ajrccm.atsjournals.org/cgi/reprint/167/5/716
Link to a Powerpoint presentation by board certified pulmonolgist/sleep doctor (Dr. Barbara Phillips) at a meeting of the American Lung Association of the Central Coast - November 2004:
"Not Every Patient Needs to Go to the Sleep Lab"
http://www.alaccoast.org/pdf/Phillips_0830.pdf
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Judy,
From all those links, it certainly sounds to me like the standard "get them in an expensive and inconvenient sleep lab" approach to diagnosis and treatment will phase out in the next ten years. We can quit building so many labs and concentrate on home diagnosis and titration and education and empowerment of patients.
Labs will still be needed for the maybe 5% of patients who have something more difficult than the garden variety OSA.
President Obama wants to save us from the high health costs. One of us needs to go to D.C. to brief him. I bet Sibelius doesn't have a clue. Besides saving the sleep lab costs, if more people can be diagnosed and successfully treated, there is even bigger savings from preventing heart disease, stroke, hypertension, type 2 diabetes, depression, vehicle accidents, etc.
Regards,
Banyon
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