Helen: Welcome to Health Literacy Out Loud. I’m Helen Osborne, president of Health Literacy Consulting, founder of Health Literacy Month, and your host of Health Literacy Out Loud.
In these podcasts, you get to listen in on my conversations with some truly remarkable people. You will hear what health literacy is, why it matters, and ways we all can help improve health understanding.
Today, I’m talking by Skype with Dr. Kim Kristiansen, who lives and works in Denmark. He not only is a practicing physician, but also CEO of a company called EvidenceProfile.
Dr. Kristiansen’s work often focuses on pain, pain management and pain research. He, along with two colleagues, invented something called DoloTest, a validated, multi-dimensional pain assessment tool that actively involves the patient.
I met Dr. Kristiansen at a TEDMED Conference in Washington DC. We sat next to each other at lunch, and he showed me how DoloTest works. I knew right away that this was an important tool to share with you, the listeners of Health Literacy Out Loud.
Dr. Kristiansen: Thank you very much. Thank you for having me.
Helen: Your work focuses a lot on pain. I know you’re a practicing physician. Why is pain so important to address?
Dr. Kristiansen: Pain is the most frequent reason for anyone to seek healthcare. It’s the most frequently presented symptom anywhere in the healthcare system. I’m working in primary care. It’s by far the most frequently presented symptom there. Every hour I meet people with pain.
Helen: Are you talking about acute pain, like, “Oh my goodness! That hurts. I wasn’t in pain yesterday,” or are you talking about that chronic, “I’ve just been feeling so awful for a long time,” kind of pain?
Dr. Kristiansen: Actually, I’m talking about both. We could see that around one-third of all patients coming to primary care in Denmark, and it has been shown around the world to be the same number more or less, is due to acute and chronic pain combined.
We do know from quite a lot of studies, both in Europe and the United States, that around one-fifth to one-fourth of the total population is suffering from chronic pain. It’s a huge problem to society.
Helen: Tell me about your role as a physician. Somebody comes to you either with the acute or chronic pain. They say it hurts. Why don’t you just give them a pill?
Dr. Kristiansen: That’s only part of it. We have to see a difference between acute and chronic pain.
Acute pain is due to some kind of injury. There’s a reason for that. We can find a wound, broken leg or whatever it might be. We can find some kind of explanation. That’s the acute pain. We prescribe some kind of treatment for that, often including painkillers, but often more than that of course.
Helen: Like what?
Dr. Kristiansen: Like physical therapies or whatever might be the reason for the pain. When the pain becomes chronic, there’s no clear definition of when it’s chronic.
We say that if pain lasts for a longer time than it would normally take the tissue to heal from the injury, we are beginning to talk about chronic pain. From a research point of view, when we make these studies we do need to have some kind of definition. Most often we say it’s three months.
Helen: People feel pain. I know pain, but you as a doctor can’t see somebody else’s pain, can you?
Dr. Kristiansen: I can never see pain. When it’s an injury and we can find the reason for the pain, of course I can see that. One patient may respond to that pain totally different from another. There’s an individual reaction response to treatment. You may say, “On a scale from 1 to 10, it’s 9.” I could say it was 7, or the other way around.
Helen: It’s very subjective, right? It’s not objective.
Dr. Kristiansen: It is indeed subjective. We cannot measure it like we can measure blood pressure, blood sugar, or something like that. It is indeed individual, and it changes within the same person from time to time during life.
When we talk about the chronic pain, it is combined with more than pain alone. That’s one of the huge challenges, both for the patient and the healthcare professionals. Chronic pain is more than pain alone. It’s a complex situation.
During the last 20 to 25 years, we have gotten quite a substantial knowledge about that from research. We knew to use that in our treatment of our patients.
Helen: You said it’s not just pain alone. What else would be accompanying it?
Dr. Kristiansen: It could be sleep problems, mood problems, disability, tiredness, social isolation, difficulties working, and things like that. It’s all combined within the chronic pain situation.
What we know from research and what we need to acknowledge, both as healthcare professionals and as those suffering from pain, is that chronic pain is not just acute pain taking a longer time.
It’s not enough just to say, “You have acute pain. It has lasted for two years. Continue to take the painkillers.” It might be part of the solution, but it’s not the whole solution.
One more thing is that chronic pain is like the worst set of persistent pain, as we call it. It is chronic or persistent. We cannot cure it, but we can treat it. We can help with it, but we cannot take it away.
Helen: You can help a person manage his or her life.
I’ve injured different parts of my body over time, as many of us have. I went to therapy. The person kept asking me, “How’s your pain on a scale of 1 to 10?” She asked me a few weeks later. I was ready to bonk her on the head. “I don’t know. I’m getting better.”
What do you think about those 1 to 10 scales? I think most of us have experienced that in some way or another.
Dr. Kristiansen: They are actually pretty good. Somehow you have to reflect on, “How is my pain right now? Ten is the worst imaginable. Is it that? No, it isn’t. It’s perhaps something else.” Then you respond to your own sensation of pain. I think it’s pretty good. From research, we know that it is good.
It’s good when you talk about acute pain if you had an operation or whatever it is. If we’re talking about persistent, chronic pain, it’s not enough because the chronic pain syndrome is more than just the pain alone.
Helen: It was just harder for me when it wasn’t so dreadful, like 8, 9 or 10, but when it was just annoying. Then I had a really hard time. I said, “I have no idea what number this is. It’s not as bad as it used to be.”
Dr. Kristiansen: That’s right. The most important part is that things are going the right direction and you’re on the track for healing.
Helen: When you and I met, you opened up your laptop and showed me this DoloTest. Do you want to tell people right now what the link is? Maybe people could be looking at that while we’re talking, but I also want you to describe it. Describe it, but also tell our listeners about the link. We will also have this link on the Health Literacy Out Loud website.
Dr. Kristiansen: The link is www.DoloTest.com.
Helen: What does DoloTest mean?
Dr. Kristiansen: DoloTest is combined of two words. In Latin, pain is called “dolo.” It’s “dolo” for pain and “test” for test. It’s a pain test.
Helen: Describe it, please.
Dr. Kristiansen: The way we normally measure, rate or assess pain is by the visual analogue scale, or the numerical, 1-to-10 scale you just mentioned. That’s the normal way to do it. We’ve done it for many years.
We’re acknowledging that chronic pain is more than just pain alone. It’s a challenge to your quality of life. Questionnaires have been made that involve other aspects. Normally it’s a box system where you put an X mark in a box. It’s all combined to some number, which means something to the healthcare professional but nothing at all to the patient.
Helen: You’re talking about all those other dimensions that you talked about, like sleep, mood and tiredness.
Dr. Kristiansen: Yes, and whatever you’re able to do and things like that. It became my idea that we are living in the 21st century. We have to involve the patient. We really do know that we’re not doing this good enough. We can do better.
In my opinion, we need to share information and knowledge with our patients. We need to share all the information the patient can get and that we can provide to the patient.
We want to share an understanding to get treatment goals and say, “What direction are we heading? What’s important for you?” and also to evaluate our therapeutic initiatives and what we’re doing for the treatment.
Helen: It’s not just the patient giving you a number or saying, “Hey, Doc. This really hurts.” In the US, we have healthcare reform coming now. It’s all about patient-centered care.
Dr. Kristiansen: This is indeed patient-centered care. This is putting the individual patient in the center. Not one of these billions of people with chronic pain are feeling the same way, so we have to treat each patient differently.
DoloTest is made of eight lines combined in a radar screen design. The patients are asked to rate different things about their pain life from the list I mentioned before on these lines.
When the test is completed, which on average takes less than two minutes, the points made by the patients are combined. Thereby, we have a visual presentation of the test result.
Helen: I’ve seen this. The closest analogy I could think of is it looks in some ways like a pie chart. It’s like a big circle. It may not exactly be a circle, but it has what looks like pieces of pie that fills up the whole. You have those eight dimensions of pain filling up that pie. Is that correct?
Dr. Kristiansen: That’s right.
Helen: Tell us more. Make a picture for us because right now we’re just listening to it.
Dr. Kristiansen: You can see that it’s a radar screen with eight lines radiating out from the center where the patient has made marks rating each of the items we’re asking about. I could come back to these items.
Then these points are combined with a line and we have this profile in a visual presentation. It is designed in a way so no problems are toward the center and the worst imaginable is toward the periphery. The larger the DoloTest profile, the poorer the patient’s quality of life.
Helen: You’re connecting the dots.
Dr. Kristiansen: Yes, I’m connecting the dots and getting a profile that way.
Helen: The patient marks each of those eight domains, and then there’s a line going from dot to dot eight times, right?
Dr. Kristiansen: Exactly. The person who’s in the most pain will have a huge DoloTest profile. If you feel good and have no pain or sleep problems and you’re in a good mood and everything is okay, that’s a very small and perhaps almost not imaginable DoloTest profile.
Helen: That would be near the very center of this pie.
Dr. Kristiansen: That’s right. It takes less than two minutes. It can be used within the clinical setting. It’s an online system, so you can do it from home, your work, or wherever you want to. Your healthcare professional can go in and see it and compare it with previous profiles and see how things are changing.
Helen: How would a person do it? Do they just click with the mouse? Is it a touch screen?
Dr. Kristiansen: Click with the mouse. Once you have completed the test and clicked on each of the domains, it’s highlighted for you. You know exactly what you’re going to do next.
When you’ve completed it all, it automatically draws a DoloTest profile and then you can accept it or say, “It’s not quite the way I want it. I want to change it,” and you change it.
Helen: You were showing me that it’s not always like a complete circle. It isn’t always parallel to the outside of that pie. Sometimes one area could be much worse. Maybe someone’s not sleeping, but they can go to work or something like that. Tell us a story of what it would look like in someone’s life.
Dr. Kristiansen: The domains we selected started with pain patients. It is really a sentence of the pain patient’s life. Then we got together with several groups of physicians and other healthcare professionals working with pain, like pain specialists, rheumatologists and GPs. We got these eight items. We know that these domains are the most important in pain patient’s lives.
When we have these chronic pain patients, they will more or less respond with some kind of rating to most of them. One patient may have mostly physical challenges and say, “My mood is okay. I’m sleeping okay. That’s not my problem, but I can’t go to work. I have this lower back pain. I cannot lift anything.” They will show that they have huge impact on the ability and job-related scales.
Another person may say, “I do not sleep at night. I am tired all day. I’m angry, tired and sad. My mood is terrible, but I can do whatever I want to do. I can actually manage it somehow.” They may have a larger impact on their psychological side of the pain.
The pain experience is composed of it all. It’s quality of life. The answer to all of this is how is your quality of life? How is the pain relating to the quality of life? It’s not just saying, “How bad is your pain?” “I feel terrible, doctor.” No, it’s, “What does it do to you?” Often, the patient is not aware of this.
Helen: That resonates with me. I’m an occupational therapist. In my clinical days, I worked in psychiatry. I was working was with people who had major mental illnesses. How does it affect the rest of your life? You’re depressed. What does that mean? Can you go to work? Can you not go to work? Can you sleep?
That’s what resonated with me about yours on a few levels. It’s very functional, which appeals to me as an OT, but it’s also very visual.
Dr. Kristiansen: Yes, it is.
Helen: Do you use this as you are talking with a patient? Are you looking at that tool together?
Dr. Kristiansen: Indeed, we are. When the patient has completed the test, we look at it and say, “What does this mean to you?” You don’t have to read a manual. It’s so easy to understand. “What does this mean to you? What do you think when you see this?” “Well, I think I’m in pretty bad shape.”
We more or less do not talk more about the pain, but, “I’m so tired all my life. I do not sleep at night because I have this terrible thing.” We talk about that. Then we say, “The next obvious question is what would be the next goal for you to reach? What are we heading at?”
Then we can have this understanding. The patient often says, “I haven’t thought about it this way, but yes, I am in a bad mood. It is affecting my pain. I know that when I’m in a bad mood, my pain feels worse,” and things like that. They can see it on the DoloTest.
Helen: You’re having that conversation together. This reminds me of some other podcasts I’ve done and other work we’re doing in health literacy where we’re working with the other person to have a common understanding.
On the face of it, this tool seems very simple. I’m sure it’s not. What you showed me seemed magnificent in its simplicity. It encourages that mutual understanding.
Dr. Kristiansen: Yes, it does. When the patient comes back and we have made some kind of treatment, we can discuss how the response to the treatment is. We can evaluate it together. Say we prescribed some pain medication. Hopefully it reduces the pain, but it might also make you sleep better and make your functional abilities better.
You can go to physical therapy. Hopefully you will be less disabled when you finish with the physical therapy, but it could also have reduced your pain, made you sleep better, and things like that.
We can see it on the DoloTest. We can react to it. We can respond to it and say, “Have we reached our goal? Where are we heading now? What’s the next point?” We can keep track of things like that.
Helen: It’s wonderful. I want to put on my professional hat right now. Listeners might be thinking, “That’s a great idea, but I don’t have time for it.” I want to address the issue of how much time this takes in practice. I also want to be talking about the evidence base for this.
Let’s just talk about the time. I imagine you’re as busy as any doctor is. How much time does it take to have this conversation?
Dr. Kristiansen: It’s different from patient to patient. As I said, it’s very easy to fill in the test. It’s simple. It takes less than two minutes on average for a patient to complete the test. They can do it from home or work.
Helen: They can do it before they see you.
Dr. Kristiansen: Yes. Often, we do not even meet when we’re in a pain management process. They can fill it out from work and I can respond by an email or phone call or something like that.
Helen: You don’t even need to have that office visit.
Dr. Kristiansen: Not every time. Of course, we do need to meet from time to time, but not every time.
Of course the discussion will take time, but you have to remember that chronic pain is chronic. More or less, we do have time for this. We cannot solve this in one consultation, or perhaps not in five or ten, but we have time to do it the right way and keep track of it.
Once we’re done, we say, “We’ve reached our goal. This is great. It might change in half a year or year or something like that, so we’ll start over again.” It’s a never-ending story.
For me, what’s important is that the patient has the best quality of life possible at this very moment.
Helen: You just used a wonderful word, story. This tool really is helping illustrate the patient’s story.
Dr. Kristiansen: That’s right. When we look back on a pain management process and look at 10 or 15 DoloTest profiles, we often talk about that. This is the story of this pain management process. This is the story told visually.
Helen: That’s interesting. For those people who are more analytic and thinking, “That’s a great idea. It’s easy for him to say, but does this really work?” can you address that, please?
Dr. Kristiansen: It does really work. We have made a scientific validation study. It was published in Pain Practice, a worldwide journal within the scientific world, in September 2010.
We have actually made a study looking at patients with cognitive dysfunctions. It is so simple that even most mildly cognitive dysfunctional people, like slight or mild dementia, are able to relate and understand the DoloTest. We’ve actually published the DoloTest profile as well.
Helen: That’s wonderful. That goes in keeping with health literacy. We can all struggle to understand health information. If we’re in pain, it’s even harder. We’re dealing with issues of language, culture, literacy, emotion and cognition. It sounds like this can almost overcome most of those.
Dr. Kristiansen: It can overcome at least most of them. It can engage the patient and make the patient active and take responsibility of the pain management process.
They say, “Yes, this is my life. I want to change it. I can do something as well. I can be part of the evaluation. It’s not just that the doctor, or whoever it is, is saying to me, ‘Do this, do that, take these pills and come back.’ I’m part of it. My voice is heard. I have a responsibility.” I think that’s extremely important.
Helen: I’m very excited about this. For those listeners who are getting equally excited or at least ready to be learning more, you talked about going to www.DoloTest.com.
Dr. Kristiansen: That’s right.
Helen: If somebody wanted to take this further and read some of those validation studies or perhaps consider adding this to their practice, do they go to the same website or is there somewhere else to go?
Dr. Kristiansen: On the same website, they can find the information and the papers we’ve made. There’s quite a lot more of it on the way. There are posters we have made at scientific congresses. There’s a blog where I write. It’s called the “Picture of Pain” because that’s what DoloTest creates. It’s a picture of the pain.
There’s a link to my blog there I write a lot about pain, pain management, and where I see DoloTest fit in in the discussions going on.
There’s also a link on how you can get access to it if you want to use it. It’s a system where you have to sign up for it. It’s healthcare professionals signing up for it. It’s not something the patient is signing up for. It’s a healthcare clinic, hospital, or whatever it is signing up for it. If they want to use it, there’s a small fee for that.
Helen: Fast forward a little bit. This is all quite visual. You’re using this as a tool of practice. What would you like to see in years ahead for tools like this?
Dr. Kristiansen: I think there’s a future in tools like this. It’s pretty simple and very easy to understand. It is used as a way to share this understanding between the patient and the healthcare professional. It’s a way to make the patient active and take responsibility and not get a one-size-fits-all treatment, but an individualized treatment, even though there are millions of people suffering from chronic pain.
Helen: This is useful worldwide.
Dr. Kristiansen: Yes, it is useful worldwide. What I hope is that it will be used much more and be a way to help patients with chronic pain have a better quality of life and know what’s going on and how they can react and respond to what they’re feeling.
If we could reduce the risk of chronic pain by early intervention, it would be my greatest dream of all. It’s terrible. Chronic pain is causing chronic changes in the nervous system. If we could avoid that for some patients, that would be fantastic.
Helen: Kim, you’re doing wonderful work. I was looking for a place to sit at lunch during TEDMED and you were sitting there with an empty chair right beside you.
Dr. Kristiansen: That’s right.
Helen: I’m so glad we met. Thank you so much for sharing what you’re doing with the listeners of Health Literacy Out Loud.
Dr. Kristiansen: Thank you very much, Helen. It’s been a pleasure.
Helen: I learned so much from Dr. Kim Kristiansen, and hope that you did too, but health literacy isn’t always easy.
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Did you like this podcast? Did you learn something new? If so, tell your colleagues and friends. Together, let’s tell the whole world why health literacy matters. Until next time, I’m Helen Osborne.