VIDEO - Patients May Not Understand Our Guidance

[okarol]

Patients May Not Understand Our Guidance
Jeffrey S. Berns, MD Disclosures
March 20, 2015
 

Jeffrey S. Berns, MD: Hello. This is Jeffrey Berns, editor-in-chief of Medscape Nephrology. A couple of days ago, I was putting together some material for a talk I'm going to be giving at the National Kidney Foundation Spring Clinical Meeting in March, and I ran across an interesting article in Nephrology Dialysis Transplantation published in 2013 by Fraser and colleagues.[1] It was a systematic review of the prevalence of limited health literacy in patients with chronic kidney disease.

Just in case you're not aware—and I really didn't think about the definition very much—health literacy is defined as "the degree to which individuals have the capacity to obtain, process and understand basic health information and services needed to make appropriate health decisions." That definition comes from a report from the Institute of Medicine.[2]

Doing a little bit of reading, it seems like limited health literacy is associated with a reading ability at maybe the fifth or sixth grade level, perhaps a little bit higher.

We think about all of the things that our patients have to do that require a reasonable degree of health literacy: filling out forms; assessing risks and benefits of therapies; self-management; self-care; shared decision-making; understanding what kidneys are and what chronic kidney disease is; and understanding what the medications are for and when to take them, how to take them, and so forth.

There's a robust body of literature to indicate that limited health literacy is associated with poorer health outcomes. I was a little surprised to read that, on average, about 25% of patients with chronic kidney disease have limited healthcare literacy.[2] It ranges from substantially limited to somewhat better, depending upon the specific patient population being examined. But, certainly, it's common among our chronic kidney disease patients to have limited health literacy.

The next question that arises: How well prepared are the materials that we provide our patients for kidney disease education? Do they give patients the message that we want them to receive?

A couple of studies have looked at this. One was published in the American Journal of Nephrology in 2013.[3] The authors looked at printed patient educational material for patients with chronic kidney disease from 19 different organizations. They concluded that about half were pitched at a reading level that was above sixth grade.

Somewhere around the fifth or sixth grade level or lower would be considered appropriate for individuals with limited health literacy. So, fully half of the patient materials were pitched at a level that was too high for a substantial fraction of our patients.

Of note, the printed material that was considered best overall was that which came from the National Kidney Disease Education Program through the federal government and from the American Kidney Fund, the Kidney School, and, I'm glad to say, the National Kidney Foundation.[3]

The second paper is just in press now by Morony and colleagues in the American Journal of Kidney Disease.[4] These investigators also looked at the reading level of a host of printed materials and found that most were pitched at individuals with a reading level of ninth grade or higher. Only 5% were pitched at patients with a reading level at the recommended fifth grade level. So, again, most of the materials would not be useful to someone with limited health literacy.

Finally, there was a paper that came out in 2014 in Nephrology Nursing Journal [5] that looked at 40 different websites providing educational material for patients with chronic kidney disease and their families. Only 3 of the 40 were thought to be fairly easy to read. At least half, in fact, were considered either difficult or very difficult to read and understand.

I think this is important information for us to be aware of as we provide material for our patients. We should think about what their health literacy is and make sure that we're providing them with educational material that is appropriate for their level of literacy.

At the same time, we should make a pitch to those who provide educational materials for patients and families with chronic kidney disease to examine those materials and make sure that they're prepared at an appropriate reading level and can be understood by many of our patients with chronic kidney disease who have limited health literacy.

Again, this is Jeffrey Berns, editor-in-chief of Medscape Nephrology, from the Perelman School of Medicine in snowy Philadelphia. Thanks for listening.

http://www.medscape.com/viewarticle/841300

[PrimeTimer]

Thanks for posting that, okarol. I think in addition to having reading material that a patient can understand, it is important that they have someone actually sit down and explain things to them, even showing them pictures and videos and be willing to answer all their questions, as well as knowing how to "prompt" a question from a patient who otherwise may be too afraid, overwhelmed or shy. I wonder how they figure out what reading level a patient is on. Seems to me that a patients level of literacy may not be easily assessed without first having a conversation with the patient and unfortunately, a lot of medical offices are overloaded and do not seem to be staffed to handle any real face time with their patients. And if a patient feels rushed, they may just stay silent. So, I don't think it's just a matter of patients not understanding literature but, the medical world not reaching out to patients as individuals. According to the article, at least they are trying improve things.   

[Simon Dog]

This is a two edge sword.  I am not a medical person, but i know how to read, listen and even google.   I am tired of docs who simplify things to the point of not giving me all the info.   When I have a surgery, and I ask what kind of anesthesia, I want an answer like "General", "mac", "nerve block" or "Bier block" - not "we'll give you some numbing medicine".   The best doc I have answers all questions in detail, and often follows up with a list of medical papers as references (the guy is nothing if not thorough).

It's easy to talk over patients heads, but equally easy to talk under their feet.

[PaulBC]

This is a two edge sword.  I am not a medical person, but i know how to read, listen and even google.   I am tired of docs who simplify things to the point of not giving me all the info.

I think it's the job of the doctor to assess the understanding of the patient and talk to that level. Some of them might get it wrong, and if they're talking down to you, you should ideally be able to let them know this, and they should accept it and change. They should also be keeping notes of how well the patient understands the situation when so much of the outcome depends on the patient's understanding. I have been happy with my daughter's care in this regard, but I can imagine it varies a lot.

[PrimeTimer]

And then there's people who are smart but who either don't care to learn about their condition or speak up and ask questions, including telling a doctor to explain things to them in a way that they can understand. My own mother was like that. She was pretty smart and an avid reader. But, like a lot of us, hated going to the doctor. If she didn't understand what a doctor told her, she'd come home and complain about it but would never TELL THE DOCTOR but she could complain to EVERYBODY ELSE about it. I often went with her to the cardiologist who fortunately, explained things in terms we both could understand. He was wonderful. But apparently her other doctors weren't as helpful....or were they? What I mean, is that I knew my mother and well, she hated going to the doctor and if she kept an appointment, she'd often bolt out of there without getting the information she needed or wanted, not even when I suggested she write all her questions down ahead of time and give it to the doctor. Was aggravating because she'd come home and complain, complain, complain. I went to a lot of appointments with her but of course I couldn't go to all of them. And she wasn't bedridden or anything, she drove her own car, had a job, etc...so it wasn't like she depended on me to taker her to appointments. Anyways, a doctor may be willing to assess a patients reading level and does assess them or for that matter, their level of understanding but if the patient isn't willing to cooperate well then....

[MuddyGurl]

This is a really hot topic for me… I;m a Vet, with SF VA hospital  and local clinic access. I lost one kidney to cancer in 2009, and am very aware I need to protect my sole kidney. But the surgeon, and the MD both said I was FINE, and just watch salt intake.!!  I was already Stage 3b..at<40 egfr  when I figured out I ALSO had CKD in 2012  I was furious, as I was given no education.  They simply will tell you you can't improve or help with nutrition, which further makes you powerless. They said a renal diet would not help.

MOST of the vets are older guys, uneducated, and what ever the MD says they  just say"Ok doc" and go eat a cheeseburger, or fail to fill the meds.  They won't read even 4th grade level. Most newspapers have always been written at 8th grade level…but we are now a visual nation, maybe short videos  like this can help.  ( this one looks like 3rd grade to me)  http://www.asn-online.org/khi/patients.aspx?ID=2

We live in a culture that assumes the problem will be solved with a pill in the future, the harried docs pass the problem to the nephrologist, who are rarely human, only  having time for serious  immediate dialysis or transplant cases. They are too above lecturing and teaching a bunch of 63 year olds who won't listen.

I actually TOLD my new VA urologist NP that  I am a researcher, have read extensively on kidney function, and ask her to talk to me a few steps higher than the average patient.  I want to save my kidney function. 

She writes my renal panel results in too casual language, tells me to make an appointment with the "kidney docs"  ??Huh? Do you mean the nephrologist?   the dept. urologist in SF?  Why isn't she doing that?

Since I have a long relationship with the head renal nurse at my hospital I ask her to make a neph appt, she does.  then the Urologist gets irritated I went around her…

Well, my kidney function just dropped 3 points in 30 days..over a year's  worth!!  At CKD stage 4 NOW….this is an emergency to ME.  I am going to wait around for YOU to maybe put in a request for 7-12  weeks later ?? hell no.

So she has to deal with patients who are like me (rare) and mostly like the  older guys….unwilling to read.

Fear of knowing bad news is universal.   Remeber the 1970s breast cancer ads showing a grim elderly lady in a lace collar: "Aunt Edna died of embarrassment" …. she was too afraid and shy to tell her doc about a breast lump……patients don't want to hear it/

Tsi s a great video of Dr. Berns expelling this education report-worth watching

https://www.youtube.com/watch?v=Sjo5F3WPWik

[PaulBC]

Since joining IHD, I have noticed the recurring theme that nephrologists aren't interested in helping you keep your kidney function. I wonder if there is a combination of factors at work here. One thing is that the doctors are pretty limited in what they can do to help your kidneys, but they have a robust toolset for helping you survive (for a while) without kidneys. If all you have is a hammer, etc.

But this raises a great point:

MOST of the vets are older guys, uneducated, and what ever the MD says they  just say"Ok doc" and go eat a cheeseburger, or fail to fill the meds.  They won't read even 4th grade level. Most newspapers have always been written at 8th grade level…but we are now a visual nation, maybe short videos  like this can help.  ( this one looks like 3rd grade to me)  http://www.asn-online.org/khi/patients.aspx?ID=2

It's pretty tough to help someone who isn't willing or able to help themselves. Maybe some doctors have tried with some patients and they've given up. Maybe they are really just way too busy. I think a patient that wants any advice besides preparing for ESRD is going to have to do this themselves. I'm a little divided in saying whether more of the onus should be on the nephrologist. Probably... but if a treatment requires substantial diet and lifestyle changes, this is far afield of the typical nephrologist's expertise. Of course, dialysis and transplants require major changes in habits as well. It may be easier to see this as a matter of life and death, whereas it just looks like a losing battle to hold onto kidney function that will inevitably go away.

I'm not really sure. It is something I wonder about.

We live in a culture that assumes the problem will be solved with a pill in the future, the harried docs pass the problem to the nephrologist, who are rarely human, only  having time for serious  immediate dialysis or transplant cases. They are too above lecturing and teaching a bunch of 63 year olds who won't listen.

Well, I do fantasize about Dr. McCoy beaming down, yanking me away from the Baxter cycler ("My God, what are you doing to that girl?") and handing my daughter a pill to fix her kidneys. But barring that, I am hoping for some genuine advances in the next couple of decades. The mistake is only waiting instead of taking advantage of whatever is available now.

[MuddyGurl]

The docs..all of them are not mind readers, so they aren't going to waste time on endless people who won't take steps or MAINTAIN any plan given them So i do understand the  dr.'s side. and there is SO MUCH to explain there is no time.

I think the VA NEEDS to have a CKD info center--where they  offer literature, classes, and online learning center..but all the dept, cares about is the return of cancer.

If you identify as a super involved reader they may be annoyed in having to unexplain what you are going off on a tangent with.."Doc Stevia can cure me, I read an article!!   even the nurses get sick of 'talking you down'   

I'd get tired to that too.. a little bit of information can be dangerous to the average person, reading even at the 12th grade level.

Like surgeons Nephs only want to deal with the unconscious kidney system..not a yakking patient….

This is where having TRIAGE system where the kidney patient is educated a long the way BEFORE they see a Neph, or  Urologist.  Problem there is Medical people aren't trained in nutrition, and dietitians can't give medical advice.

AFTER I complained about my Stage3b status I was frog marched over to the dietitian office where i sat thru a 40 minutes show and tell of what to eat, what calcium is, potassium in potatoes, etc.  I was hungry for knowledge and  appreciated it,

BUT these same dietitians watched me struggle for 16 months on the high carb USDA *&& $#^&%&%^ "healthy Plate" diet, and could offer no ideas or alternatives as I failed miserably.

SO one MUST be advocating all the time..my MD told me later i didnt NEED a renal diet…so I was left wondering  if that means I just act helpless until  the worst happened and THEN I can learn how to stay alive.

I am encouraged by the many programs, the NKF site, the KEEP programs, the Global Kidney program to educate professionals… but dietary aid "Let food be your medicine" is too far out of the inner circle, and ignored.