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Adventures in Sleep

Sleep Apnea Patient Care Needs Improvement

Published August 16, 2012 9:50 AM by Penny Mehaffey
Penny Mehaffey, RPSGTI am concerned and frustrated this week. I keep hoping to find that magical sweet spot between DME's and patients.

Our city has about 10 different DME companies and as you might expect, service can vary greatly. It can be a challenge to understand exactly what takes place at the DME. I know the patient is given RX for therapy and usually a copy of the sleep study to deliver to his vendor. But, frequently the RX is lost by the time he arrives at the vendor. We script for the mask and therapy but not a specific manufacturer for the CPAP machine. That choice is left up to the patient. My frustration is that quality of care, or maybe it's the continuity, is lost here. Patients return with poor fitting masks or masks they hate. Often they say they weren't given a variety of masks to choose from. They also come in knowing nothing about the CPAP machine they have. They are unable to tell me what pressure they're on, if they have a humidifier, or what type of machine they use.

The last PAP-NAP I conducted was for a businessman who was sleeping poorly. I was shocked to find how little he knew about his equipment and then even more shocked to find that he was using one of the better vendors in town.

Please don't misunderstand me, I am not attempting to place blame anywhere. I just am trying to understand. What does it take to get a patient involved in their care, to speak up if uncomfortable, to ask questions if they don't understand?

There is only so much time that can be spent on patient education in the sleep lab. Follow up and reinforced education have to occur at the vendor level. I know they are faced with time constraints as well. Still, with all the support that is available to sleep patients, ie; the lab, the vendor , the clinic, the support group, the websites, the follow-up appointments, and phone calls, it seems the level of knowledge the patient has is unacceptable. What else can we do?

15 comments

I just wanted to say that patients who are instructed properly (2 hour instruction) retain minimal information on usage, cleaning,  adjusting mask while supine , etc.  Even with all the information printed out for home referencing.  We have come to the conclusion there sleep deprivation is part of the problem

Kim September 20, 2012 2:01 PM

We hear stories of "drive by" setups.  The guys get a receipt, leave instructions, and split.  I hope these are apocryphal, but patients come in with an appaling ignorance of how to use their machines.

Sandy Ricket, Sleep - RRT RPSGT, Nemours September 11, 2012 11:45 AM
Orlando FL

 Wow Jessica, you are right on the mark.  I work in sleep, but also worked the DME side and know how difficult it can be to get compliance from pt's. I too would spend at least an hour with every new set up and you could always tell who was gonna do well and who wasn't serious about it at all. I know there is DME places that spend very little time with education with the pt, so the pt unless the pt is determined to be compliant they will most likely fail. All pt's should be following up with their doctors, and it is their job to make sure the pt understands why they need CPAP/BIPAP/ASV.  We tell them too, but alway seems to stick better when the doctor takes the time and explains.  Mask fit as far as Im concerned is the key to a successfull titration, all all sleep techs need to take the time and do this.  I have went through many, many masks until the right one is found.  Not everyone can tolerate the pressure so the tech should try anything with in the their protocol to try and help the pt. While your doing the hook up is a great time to answer the questions and try to get them to talk about the concerns they might have.  This is very scarey to alot of people so it is ur job to lessen the fear so they may embrace the therapy. I could go on and on about the who, what, where and why, but the fact remains we all need to do our job the best we can. Every pt should be treated as someone special.  Someday I might be you or someone you love.

Laura, Sleep - RPSGT August 24, 2012 11:31 AM
IA

This is a problem that is not going to just disappear.  The problem is complex and needs to be addressed on many levels.  Blaming any 1 aspect is futile.  I have worked in sleep, resp. care and DME.  I have seen every experience that has been discuseed in this blog and heard every excuse a patient can offer.  The bottom line is you have to get the patient on board with therapy before anything else will help.  I am a huge proponent for education.  Knowledge is power and if you get the patient to truly understand the implications of non-compliance, you have a greater chance of them following through.

I also believe that the sleep lab has a responsibility to not only educate the patient but find a mask that is comfortable for the patient.  For many, this is their 1st experience with CPAP and that will set the tone for how compliant they will be.  Prescripts for the company I worked for always included the mask and size so having a comfortable mask is imperative.

We also need to understand that when educating people have different levels of understanding.  The elderly often do not retain the information they have been told.  Not because they weren't listening but because of mental impairments or simple fear.  Writing down the information on a sheet of paper they can keep with their med list is a good solution to that problem.  

As far as the 20 cm H2O, you need to understand that you have to prove the patient has failed CPAP before putting them on BiPAP.  Insurances simply will not reimburse otherwise as there is a significant cost differnce.

When I worked in DME, I always documented thoroughly and sent reports to the physician anytime I felt a patient was being non-compliant or uninterested in teaching/education attempts.  This not only proved I did attenpt to do my job but will give the dr a head's up if excuses for not wearing the CPAP are given.

You are always going to have non-compliance people, which is why most insurances rent for the first 3mos before buying.  Compliance has to be proven through the data card.  As medical providers we can only provide excellent service and hope for the best.  I have often had to resort to very blunt information regarding their medical condition to get them to understand how important sleep is and therefore why the CPAP is needed.

Finally, we have to remember that people take sleep for granted.  As such, it is usually the 1st thing compromised when time is limited.  Making your patient truly understand that sleep is how your body heals, grows and functions well is paramount.  And not only physically but mentally too.  

As care givers and medical professionals we ALL have to do our part and blaming is not going to solve anything.  When everyone gets on the same page and we cooperate  to find a solution instead of pointing fingers change will finally result.

Just my humble opinion.......

Tina Christ, RRT/RPSGT August 22, 2012 7:34 AM
IL

One of the requirements for my patients when they are placed on CPAP is a CPAP Management appointment with me a few weeks after they are placed on CPAP.  I go through every thing with them...We have a great success in compliance and treatment because we are doing this.  They are then required to have a follow appt with the Board Certified Sleep Physician after that appointment.  Compliance downloads are done at every appointment.  The patient feels supported if there is a problem.  When I place a CPAP order, I actually specify the machine and the mask, there are so many models available, but my one specific requirement is for the machine to be "smart card capable."  There are machines out there with the same name, they look alike, but depending on the model, aren't "smart card" capable.  The smart card capabillity has proved invaluable to us as a collective practice.  I order the mask that I use on the study night.  If the mask proves to be uncomfortable after the patient uses it for several nights, I do the mask fit appointment here in my office in lieu of the CPAP Mgmt appt and then make another CPAP mgmt appt for them so that I can wholly support my patient.  The patients have much better compliance and less failures as a CPAP patient.

Sandra Steinhoefel, Resp Ther/Sleep - RRT, NPS, AE-C, Sleep Technician, Sierra Pulmonary and Sleep Institute August 21, 2012 10:57 PM
Sparks NV

One of the requirements for my patients when they are placed on CPAP is a CPAP Management appointment with me a few weeks after they are placed on CPAP.  I go through every thing with them...We have a great success in compliance and treatment because we are doing this.  They are then required to have a follow appt with the Board Certified Sleep Physician after that appointment.  Compliance downloads are done at every appointment.  The patient feels supported if there is a problem.  When I place a CPAP order, I actually specify the machine and the mask, there are so many models available, but my one specific requirement is for the machine to be "smart card capable."  There are machines out there with the same name, they look alike, but depending on the model, aren't "smart card" capable.  The smart card capabillity has proved invaluable to us as a collective practice.  I order the mask that I use on the study night.  If the mask proves to be uncomfortable after the patient uses it for several nights, I do the mask fit appointment here in my office in lieu of the CPAP Mgmt appt and then make another CPAP mgmt appt for them so that I can wholly support my patient.  The patients have much better compliance and less failures as a CPAP patient.

Sandra Steinhoefel, Resp Ther/Sleep - RRT, NPS, AE-C, Sleep Technician, Sierra Pulmonary and Sleep Institute August 21, 2012 10:52 PM
Sparks NV

In my role as the home health respiratory therapist I am encountering the "non-compliant" at the end of the process- those that have had their PAP units collecting dust or still sealed in the original packaging.  I have had some success with persuading patients to utilize their units by emphasizing during my visit the recurring theme of "IT IS ALL CONNECTED".  I tie lack of PAP utilization back into a worsening of their disease process whether it is congestive heart failure, hypertension, diabetes, pulmonary, etc.  It seems to resonate with them when they are told that every time they obstruct their body is going into panic mode with BP, BS, HR and CO2 going "to the moon" which stresses the whole body and thus worsens their disease.  Doesn't work every time but a true victory for the patient when it does.

Maureen Sebangiol, RRT, Home Health & Hospice - Director of Quality Assurance/ Home Care RT, Marianas Health, LLC August 21, 2012 6:06 PM
Saipan

Thank you Jessica, you hit the nail on the head. The patient has to want to participate in their treatment and the physicians/PA's/RT's have to support them in this also. I work in both Sleep and DME and see both sides of the problems. I am lucky enough to work for 2 great organizations that work together to support successful treatment for OSA. Not everyone is going to be successful getting treatment simply because they don't understand what is going on in their bodies and don't know how to take care of themselves, but that is a whole different agenda. All we can do is to continue to work on improving our education of pt's about OSA,SDB and treatment W/Cpap/Biapap and hope that everyone supports them in their effort. We also have to hold the accountable as adults to learn about their disease, equipment and treatment.

Doug , Sleep - Respiratory Therapist, SMMC August 21, 2012 4:29 PM
Biddeford ME

As they say it rolls down hill - sleep physician to the sleep lab to the DME.

My experience has shown me that alot can change between the sleep lab and the DME. All potential CPAP users should have a self-efficacy evaluation to assist in determining what patient is at risk for CPAP non-adherence.

Sleep labs often overestimate how well they have prepared the patient for CPAP.

Now, throw in HSTs especially ordered by a non sleep specialist followed by AutoPAP and PAP preparedness really takes a nosedive.

All sleep centers should establish a PAP protocol that recruits DME "partners" in establishing a comprehensive PAP program. At that point the "referral" relationship should end and the TEAM OSA begin.

Gene , Sleep Support Center - Clinical Sleep educator August 21, 2012 3:34 PM
Nashville TN

What is interesting here is that no one wants to blame but everyone has a complaint.

So then how does anyone become accountable and therefore have service quality change for the better?

There is easily someone who notices the issues and who is affected by the issues. A collaborative effort usually gets results.

With that note said, there is the clinical fallout from poor quality service. I wouldn't yell louder if in this situation, I would pick the best example of vendor follow-through (even if lousy but better than most) and I'd go after that source with questions and more questions. And I'd be careful not to ask questions that held attonations of blame, but questions about accountability for proper patient education.

Questions like:

How do you measure your standard of patient care to get more and more business?

Do any you (the physician or sleep lab) require follow-up communication regarding their patient's care?

The sky is the limit for effective questions. And questions either do two things to the one being asked:

1) the one being asked is guilty and gets defensive and shuts down communications

2) the one being asked admits that things could be better and does something about it and improves communications

The vendors reflecting the latter are the ones to continue to work with, even if they operate from a lower standard. The only way is up, if they care at all. And maybe an alliance can raise standards  so it is an enjoyable experience. Sometimes assigning accountability comes down to how questions are asked and using the fun of good professional networking.

Attitude determines altitude in everything.

Bill August 21, 2012 10:32 AM

Create TEAM OSA where all stakeholders accept responsibility for positive therapeutic outcomes. The patient must be an active participant. Our goal (TEAM OSA) is that the patient has been provided the education and resources to successfully self-manage their OSA. Believe me, I encounter patients on a daily basis that do not know the basics about there pap unit or their condition, but I keeping pushing for better eduation and a disease management model that works. It starts with communication and the ability to freely address issues with the physician, sleep lab and DME provider to achieve the ultimate goal of long-term adherence and reducing co-morbities.

Gene, Sleep Support Center - Clinical Sleep Educator August 21, 2012 10:01 AM
Nashville, TN

I definitley am not placing blame.  I am feeling the same frustration after exhausting the system much as you have.  To clarify, not all scripts are hand delivered by patients but frquently for various reasons it happens.  I work very closely with our vendors to ensure they have all the documentaiton they need to set up service.  You reinforced my complaint which is that after all you have done, the patient many times remains untreated.  How do you "make" a patient take responsibility in your company?

And not to make you pull your hair out, but what about the new patient education guidelines that say if your education fails and the patient is readmitted you don't get reimbersed?

PENNY August 16, 2012 7:16 PM

John - That is a very uneducated statement on your part. How will you advocate and help patients adhere to their therapy with an attitude like that?

Jessica Wheeler, DME - Respiratory Therapist August 16, 2012 5:48 PM
Camden DE

It actually does sound like you are trying to place blame. I work for one of the better DMEs on the East Coast. We have a comprehensive PAP program and are respiratory-therapist owned. On average I spend an hour to an hour and half with each patient on a CPAP set up, as do my 3 other coworkers. During this time we do an in-depth teach and a mask fitting where the patient is allowed to try on as many masks as they would like. The patient is explained in detail what the compliance requirements for their insurance are. They are told about the mask guarantee, the CPAP warranty, to call whenever they have questions, and then they are given manuals and a whole folder full of educational materials. Yet, our outcome is the same as you are talking about here. Why? Because in the end the patient has to be responsible for their care.

I have some patients that do great, they come in and they are ready and eager to learn. Some patients are a struggle. Many answer their cell phones continually while I'm trying to teach them. Some sleep, don't pay attention. Some bring their kids and spend the majority of their time chasing them around the office. Most just expect me to do all the work for them. I have others that don't listen. I tell EVERY SINGLE PATIENT that they can exchange their mask in the first 30 days for any reason if they do not like it. All they have to do is call and make an appointment. 90% of them never do. I call people for one week and one month follow ups. My calls are either never returned or problems are not reported when I ask them specific questions about how they are doing with their PAP. Yet no one ever makes the patient take responsibility. You certainly didn't with this statement: "Still, with all the support that is available to sleep patients, ie; the lab, the vendor , the clinic, the support group, the websites, the follow-up appointments, and phone calls, it seems the level of knowledge the patient has is unacceptable. What else can we do?"

It starts with the PHYSICIAN and everyone in contact with the patient from that point has to follow through and work together and communicate. I have one sleep group here that does not do a follow up with the patient after they have their sleep study. So the patient comes in and there is time spent because they want to know WHY they need a CPAP. I have physicians if I call them with a suggestion to help a patient be more compliant, they do not want to cooperate. They want the patient to have a certain mask a rep told them about or they don't want to change anything.

Perfect example: I had a patient come in for CPAP set up with an ordered pressure of 20. Now the first thing I don't understand is why the lab let the pressure get that high without trying him on Bipap. After trying on every mask we had, the patient was able to choose one he could contend with (ever tried to fit a FFM mask at a pressure of 20?) only for him to come back a few days later to my office to complain about the pressure. We re-tried on all of the masks and the patient kept saying it was the pressure. I called to the doctor's office to see if we could either place him in auto mode indefinitely or just long enough to view an auto titration report, to be told that I was not a physician and not allowed to request, the physician would decide. Nothing was then done for several days until the patient showed up in the office. They gave him a script to drop his pressure to 17 and raise it up 1 cm a week until he was back to 20. The patient's CPAP was eventually picked up for non-compliance. Blamed was placed on me by the physician.

This morning I visited a woman who I received a nasty call from a PA in a pulmonologist's office about. The PA was angry with me because she downloaded a patient's compliance card and the patient had bad compliance. The patient told the PA her CPAP fell off the table and broke and she can't use it. She told the PA she called me (I never received a call) and that I never came out. I went to the patient's house this morning and the CPAP is not broken and is working condition. She's just not using it. This is the second time she's been set up with a CPAP through our company, and this morning was the third re-teach have I given to the patient in addition to the 2 set ups. At what point do we decide CPAP is not the answer for this patient?

Futhermore, I've gone out with the account execs to doctor's offices to talk to physicians. We have a great company, but one doc said he doesn't like to refer to us because faxing the script is too much work. He'd rather use the company that mails out the CPAPs with no instruction because all he has to do is click buttons and press send. If the doctor doesn't care about his patients, how can we?

I think you need to come a little more correct with this blog. To start, why are you even allowing your patients to hand carry their scripts, then get frustrated with whatever DME when the patient doesn't deliver? Take the extra step and fax the DME the script, sleep study, and correct demographics. I can't tell you how many bad phone numbers and addresses we get from physician's offices. Meet with your patients and answer their questions before they get to the DME. Refer your patients to a trusted DME that uses a good quality of CPAP (We prefer Respironics because of the CFlex and we give every patient an AUTO unit) and who also honors the 30 day mask guarantees. Establish a rapport with the therapists there so everyone works together to care for the patient, that way if there is a problem patient one or the other can pick up the phone and have an open dialogue about it. If the DME calls with a concern, listen. If the patient doesn't know, make them take responsibility for their learning and care of their sleep apnea. Don't write a blog blaming someone else when you haven't done all you can do.

Jessica, DME - Respiratory Therapist August 16, 2012 2:09 PM
Camden

You would think that selling a machine for over $2000 the company would give more than 5 minutes instruction to the patient.  Now I can see why they end up in the closet & are not used!

Joel Price, RRT August 16, 2012 1:03 PM

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    Adventures in Sleep
    Occupation: Sleep technicians
    Setting: Various sleep facilities
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