The problem with doctors

Post by **ViewsAskew** » Wed Mar 04, 2009 9:28 am

When we started talking about a survey, I thought it a great idea. Then I started working through what I'd ask. I knew Zach was working on it, too, but I couldn't sleep so took a stab. Before I knew it, I was asking lots of questions that made me question what I was doing. Why did I want this survey? What did I want to accomplish? Did I want a list of doctors who could treat RLS? If so, what was the criteria for judging that? Was I judging their competency? According to what standard?

I decided to take a step back and look at what is happening. I wanted to see if a survey was going to solve anything.

The following posts are a rough draft of where I went with my analysis; I have thought about it and articulated part of this in an email to a friend, but most of this is me typing as I think in the moment, so definitely isn't a complete look, nor have parts of it been given the thoughtfulness they deserve.

I decided to use an approach that is used to solving performance problems. This approach to solving performance problems is to ask what the current performance is and what the desired performance is. If there is a discrepancy between them, then the performance is reviewed in relation to 6 areas that impact how a person does his or her job.

Post by **ViewsAskew** » Wed Mar 04, 2009 9:29 am

The IS or current performance: physicians apply outdated, irrelevant or inaccurate theories to treating RLS, resulting in patients who have partially decreased symptoms, no change in symptoms, or worsened symptoms and continued decreased quality of life.

The SHOULD or desired performance: physicians apply up-to-date and relevant theories based on current medical research and expert physician best practices to treating RLS, resulting in patients with 80-100 percent decrease in symptoms and increased quality of life, based on RLS Quality of Life questionnaires.

So, there is a difference between what we want to happen and what does happen. This could be quantified (and should be) in additional ways.

Given the difference, what is causing it? One of the hallmarks of applying this type of approach is starting without an end in mind. Because I was impacted by this whole problem, I couldn't step back and kept thinking I knew what was needed.

Post by **ViewsAskew** » Wed Mar 04, 2009 9:32 am

That leaves the analysis of the 6 areas that impact the current performance and prevent it from being the desired performance.

Consequences, incentives, or rewards:
There are no consequences for bad performance. We, as patients, rarely do anything. We don't complain, we don't tell the doctor, and we leave. If we do complain, the doctor doesn't have any way of knowing that it is his (or her) behavior that is the cause of the problem. He or she can assume it is that we didn't listen, weren't receptive, etc.

I can't think of any incentives to do differently except potentially to get more patients. But, if no one knows that they do well, how could this be an incentive?

Rewards - what rewards for good performance? Or bad? None either way.

Tools, environment, resources:
The doctors should have the tools and resources (nothing special needed), but the environment is a potential problem. Doctors, from what I understand, are under tremendous pressure to document in order to protect themselves in lawsuits. A doctor recently told me that the average physician can spend 2-3 hours a day on this type of work. Insurance also impacts this time; while they hire staff to do this, their time is also involved. I heard one doctor say that he needed 5 staff people for every doctor in his practice to handle insurance.

These issues do not impact treatment itself, but it certainly must impact how much time could be spent learning new things.

Expectations and feedback:
Feedback is likely a problem, similar to consequences. We, as patients, don't (and can't, I'd argue) provide them with the feedback that would make a difference. They aren't going to listen to us! In some cases, we can tell them what they are doing isn't working and provide them with some feedback from an expert, and it may help. But, generally, this is a problem that we are unable to resolve.

There are no expectations regarding what they should do. There is a general expectation to do no harm and to help patients, but nothing specific to outcomes for RLS. This is very much related to the last category, however.

Motives/Preferences (attitude):
This includes factors that influence positive or negative feelings about the job. In this situations, I'd guess that a potential problem may be that some of these doctors think they know everything and that gets in the way of the last category, of receiving feedback and applying it to their performance, etc.

Individual Capacity:
This is stuff like intelligence, physical abilities, and professional characteristics. These are doctors. They have the capacity to treat RLS.

Skills and knowledge:
According to research, a true skills and knowledge deficit is only the cause of performance problems about 15% of the time. Yet, in this case, the majority of the problem is exactly this.

Doctors, historically, have received no training on RLS specifically. Even neurologists and sleep doctors have had little training. They truly do not know what to do and how to do it.

So what is preventing them from learning? All of the above: their limited time, the feeling that they don't need to learn, the lack of feedback that they are doing it wrong, and no consequences to doing it wrong. Another factor is the extreme difficulty it takes to get CME credit. I asked two doctors why we couldn't create courses. They laughed at me. It takes a university to "back" you for starters and then there are very strict rules on what qualifies.

Post by **ViewsAskew** » Wed Mar 04, 2009 9:46 am

Besides an email I sent where I didn't think it through, I didn't think it through all that much tonight, either. I simply typed what came to mind. I am certain that there are other things that I've missed, but imagine that the gist is here.

The issue to me is where does that leave us and the Foundation? I am considering sending this to the Foundation, but I doubt it's nothing they don't already know.

What it does for me it to reinforce how hard it is to find a doctor. Unless it's a special interest for the doctor, he or she has a patient and searches for the current research and get's interested in some way, we are screwed.

We are not without any options, however.

First, we can ensure there is feedback and consequences. That may simply be a letter sent to supervisors, the hospital, or the HMO, but we can write EVERY time we have a lousy experience and tell what happened and why it was lousy. We can cite our experts, such as the Algorithm and the Hening, Buchfurer, Lee book that clearly list how to provide care. We can leave the physicians who do not treat us, but we need to ensure they understand WHY we are leaving, or they won't see the consequences. We also need them to understand the consequences of their actions: how it hurt us, made things worse.

Second, we can try to educate them. Many of us do this, but maybe we need to think through how we do it. Maybe we could create a "job aid" that helps them find the info. It could be a chart and list the potential problem or issue and how to find out the answer. For example, it might list intermediate RLS, moderate to severe RLS, refractory RLS, augmentation, quality of life, etc. and in the column next to it, list the websites, books, research papers, existing CMEs, etc. that can help them learn it.

What other ideas can you think of?

Neco · Post by **Neco** » Wed Mar 04, 2009 1:44 pm

You make a very important point Ann.. I have often asked many of these questions, about myself, about the foundation and their goals, etc..

For me the problem is simple.

Doctors are poorly educated about RLS and/or are using antiquated treatment and diagnosis measures. Part of this problem is the Doctor, some of them just WON'T change and don't like to be told to change. They are paid to be thinkers and not all think the same way, and unless some report comes out in the highest most respected medical journal that totally lambasts the current treatment for a disease or style of treatment, they will almost never change. Some of them will never prescribe opiates, period.

To me the solution, is to find a way to educate these doctors. That is the only way to solve the problem, and that is what I feel the foundations goal should be as well. Education and promotional awareness are going to be the two single biggest factors in any attempt to increase the legitimacy and quality of RLS care.

woodsie357 · Post by **woodsie357** » Wed Mar 04, 2009 4:55 pm

Thank you Ann for all your thought and time.

I think it would be cool to take a RLS score card to a Dr appointment with me. Let them see it even, and let them know it's going to be reported back to the RLS foundation Forums. Maybe one of those 1 2 3 4 5 rating cards. And list a few different aspects on it, grade them. Maybe it will perk their interest and get us 5 more minutes of their time.

This may not be a good idea for everyone but I would love it. And if enough of us did it we could list the high rated Doctors across the world and their office locations.

/shrug... this seems like a good place for ideas =)

mackjergens · Post by **mackjergens** » Wed Mar 04, 2009 6:36 pm

Maybe our first line of attack should be the medical schools that are educating these Drs. Most Drs go to medical seminars for updated medical material every few yrs. So maybe we should ask the RLS foundation to start the education of rls there and of course the medical schools also.

As hard as it is to find fault with these Drs when seeking treatments for rls, many times its actually not their fault since they were not taught about RLS in medical school. I have heard that very little time is spent on this disorder. That does not entirely let them off the hook, any good Dr should take the time to read and educate himself, if he has even one patient that continues to complain about this disorder.

30 yrs ago, when I would mention my legs to a Dr, they would listen but of course had NO knowledge of what rls was, most listened but had nothing to offer. in recent yrs, Drs seem to know what RLS is, but are simply not educated enough to treat it, first thing out of their mouth is REQUIP.

As we all know the key to helping ourselves is to read and educate ourselves as much as possible. I could name off a great number of times I have saved myself a bad night of horrid rls, simply by saying NO to a med that a Dr wanted to give me. not just to treat rls, but things such as antidepressants, which is another med they toss out for you, since they dont understand you arent depressed, you are sleep deprived. and of course when you get the flu or cold, congestion, they dont understand when you say sorry I can take that med, it makes my rls worse.

Now if we could just get the Drs educated about RLS, but at the moment, I think there is very little we can do, other than educate ourselves and in turn educate Drs. No they will not learn from just one patient, but in time they will run across enough RLSer's they will began to listen.

We have come a LONG way in recent yrs, I can remember not many years ago, when I would say I have creepy crawly feelings in my legs and I have to walk all night, I would see a surprised look come across the Drs face, and I knew he was thinking.. "nut case" *L* I dont see that look now days, but I also find that most Drs are still not educated enough to treat most of us. But it is better and hopefully it will continue to become better treatment for RLS.

I just have to remember back to my Grandmother who had rls for all her life, she died about 5 yrs ago and still had NO meds for her rls, at 98 yrs old. Can you imagine living 98 yrs and having rls every night of those 98 yrs and having no med to help.
Remembering going to her house and getting up in the middle of night due to my rls and finding her in the kitchen due to her rls, keeps me going, and knowing that if she could handle it , I can handle it. Esp. since I now have meds that help.

woodsie357 · Post by **woodsie357** » Wed Mar 04, 2009 8:22 pm

I think it's one of those things that unless you've experienced it first hand you just can't understand. They should make some sort of device that you put on and it mimics the sensation as part of med school.

SquirmingSusan · Post by **SquirmingSusan** » Wed Mar 04, 2009 8:55 pm

It already exists, Woodsie.

http://hcxlabs.com/case-study/disease-state-simulation/restless-legs-syndrome-simulator

I really like your idea of going into a doctor appointment with a rating system, and telling them you're going to rate them. :twisted:

Post by **ViewsAskew** » Wed Mar 04, 2009 10:09 pm

It's easy to agree that education is the answer...it's hard to figure out HOW that can happen. There are variables affecting the their ability to learn (particularly time) AND we have no way of consistently reaching them. There isn't one place that all doctors can go for education....but maybe there should be.

That is one option. A foundation that simply supports doctor education and identifies the newest up to date info and has it all in one place. Links to CMEs, links to research articles, etc.

One stop research and learning.

I also like the scorecard. It has to be carefully developed so that it is without bias and doesn't alienate them. Our goal is not to make them mad or angry, but to engage them so that they WANT to learn more and help us.

woodsie357 · Post by **woodsie357** » Wed Mar 04, 2009 10:47 pm

ViewsAskew wrote: I also like the scorecard. It has to be carefully developed so that it is without bias and doesn't alienate them. Our goal is not to make them mad or angry, but to engage them so that they WANT to learn more and help us.

Exactly!!

Susan - I'm glad they have that. I wish each person had to wear it for one full week though. I think it takes a full week of disrupted sleep to get it. Thanks for sharing!

Neco · Post by **Neco** » Wed Mar 04, 2009 11:09 pm

Maybe the foundation should partner with CME workshops, etc to provide briefing courses on RLS.. The current state of research, an overview of the actual Mayo Algorithm Document, as well as actively engaging in questions and answers.. Sort of an RLS workshop of sorts. I know the foundation has limited funds and probably can't afford to launch such a project on its own, especially for multiple workshops per year and location. But perhaps contacting schools that hold refresher / CME courses, etc and developing a partnership would be part of the solution..

You could have doctors who are recognized experts with multiple patients, RLS researchers, etc conduct the workshop.. In fact it would likely have to be that way. No doctor would ever listen to, or want to attend a workshop run by one of us.

Post by **ViewsAskew** » Thu Mar 05, 2009 12:26 am

Doctors within the foundation have and do create CME courses and participate in educational opportunities.

I imagine that the Foundation is ahead of us in all of this, but are limited by funding, and potentially by mission. Some of this may be outside their mission.

Kwazylegs · Post by **Kwazylegs** » Thu Mar 05, 2009 5:05 am

Whenever I think of financial resources and clinical medicine, a few thoughts pop into my head (and I wonder where my headaches come from)...How many FDA approved medications currently exist to treat RLS? Who holds the patents on them? How many medications are prescribed off-label for the treatment of RLS? Who holds unexpired patents on these medications?

Now, if we're looking for a source for financial support for funding the education of prescribing physicians, wouldn't these pharmaceutical manufacturers jump at the opportunity to participate in such a program? All that would probably be needed is a plan, and a degree of organization to put the thing together.

Am I being naive? Is this idea way more difficult than it appears? Just a thought (my headache is going away).

---Andy

Post by **ViewsAskew** » Thu Mar 05, 2009 5:21 am

I think that is a huge part of the problem.

Mirapex and Requip are the only two approved meds. They have put the most money into education. BUT it only behooves them to teach: use dopaminergics. They get nothing out of doctors really learning about RLS in general. They also get nothing out of teaching doctors about augmentation, because if doctors knew, a lot less would prescribe them so cavalierly.

Both of these, IIRC are now available in generic form, so they have much less incentive to do anymore than they did a few years ago when they spent most of their wad on those advertisements...

That leaves about 30 medications, all used off-label and most of them with the patent run out.

Only Neurontin and Lyrica are likely potential candidates and there is a trial right now for Neurontin treating RLS. It it's approved in the next few years, they would be the next source for providing educational funding. Again, they have NO motivation to teach about the REST of RLS, as they do not benefit.

I asked Dr Bucfurer a few years ago about this, particularly about methadone. It's what the RLS experts tend to use the most and it would help us so much if it was an approved med. Because the patent ran out years ago, no one is going to pay to do the research needed. That's the problem with the majority of meds that work to some extent - it's not worth it to anyone from a monetary perspective.

I imagine that you might get some money from them, but then you have to fight the other side who says that if you take pharma money, you are in their pocket and the info is tainted.