Helen Osborne: 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 about health literacy with some pretty amazing people.

Today, I’m talking with Dr. Emilie Johnson, who is a pediatric urologist and health services researcher in Chicago, Illinois. She cares for pediatric urology patients and their families at the Ann & Robert H. Lurie Children’s Hospital. She also is an assistant professor of urology at Northwestern University.

In her practice, Dr. Johnson addresses the medical and surgical needs of children with a wide range of conditions involving the urinary and genital systems.

Emilie and I are both on an advisory panel for PCORI, or patient-centered outcomes research. The particular focus of our panel is on communication. I am wowed and learn so much when Dr. Johnson shares experiences from her practice, especially when she talks about how we communicate a wide range of worry.

Welcome to Health Literacy Out Loud.

Dr. Emilie Johnson:Thank you so much, Helen. I’m so happy to be chatting with you today.

Helen Osborne: I’m delighted. Our listeners are going to learn as much from hearing you on this podcast as I do in person. That is a treat.

Let’s start from what I was talking about. You raise a term that makes sense to me intuitively, but I really want to know what it’s like from the doctor’s perspective. It’s that “wide range of worry.”

Dr. Emilie Johnson:Absolutely. In my practice, as you mentioned, I see pediatric patients and their parents who come to me with a variety of problems. Within that, people come to me with very different backgrounds. Some are incredibly worried about the condition that their child has. Some are much less worried or maybe not worried at all.

Helen Osborne: Give us some examples if you would.

Dr. Emilie Johnson:Absolutely. For me, the example that immediately comes to mind is a condition called hydronephrosis, or swelling on the kidney. It’s one of the most common conditions we see in pediatric urology.

One of the reasons it’s so common is that the ultrasounds that pregnant women get nowadays are incredibly detailed and accurate, so we pick up sometimes really small abnormalities. We’re not even sure if they’re abnormalities that require follow-up with a pediatric urologist.

Helen Osborne: Before the baby is even born.

Dr. Emilie Johnson:Exactly. I’m fortunate enough to sometimes get to meet the pregnant moms and their partners, which is a really fun and exciting time in a lot of people’s lives. I really enjoy that. Sometimes I’m meeting the families with a newborn baby, and that’s also exciting, but can be a really stressful time as well.

Helen Osborne: They have this condition. Tell us why there’s such a wide range of worry.

Dr. Emilie Johnson:As I mentioned, hydronephrosis is the medical term for what I call swelling on the kidneys. Basically, when you look at the kidneys on an ultrasound, you really should not see any of the urine in the kidney.

However, sometimes when a pregnant woman has an ultrasound, you can see a little bit of the urine within the structure of the kidney. It can be just a little bit of the urine, or it can be really a lot where it looks like the kidney is very stressed out.

A lot of times, the families aren’t necessarily given much context as to how bad the swelling is. They might have heard a little bit from another doctor or the ultrasound technologist, but really, they’re not even sure how worried they should be when they come to see me.

Helen Osborne: You’re the specialist. You’re not the first person finding this. You’re the one talking to them after they’ve gone down the path a little bit, right?

Dr. Emilie Johnson:That’s absolutely true. Everybody’s path is a little bit different. Some have talked to five different doctors, gone online, talked to their friends and developed this picture in their head about what they think is going on.

Others maybe have heard one or two little things from their OB/GYN doctor, for example, but said, “I was told this was no big deal. I’ll wait until I see Dr. Johnson and we’ll go from there.”

Helen Osborne: You said this is pretty common. There’s a wide range of worry, though. I remember when I was pregnant and had a newborn baby. A sniffle would make me think, “Oh my goodness. How bad is this?” Especially as a first-time parent.

Is there really something to be worried about this? You used the word common. It must be common for you. Is there something for parents to sometimes be worried about?

Dr. Emilie Johnson:It’s a tricky question, because most of the time the answer is no. But once in a while, the answer is yes. If you, for example, look online or talk to your friends to get more information, you may have no idea whether you should be in the no or yes group.

Helen Osborne: Are you the doctor that helps answer that?

Dr. Emilie Johnson:I am the doctor that helps answer that question. Sometimes when I think about this wide range of worry concept, what I notice is that the level of worry of the family is very different from the level of worry that I have when I look at the ultrasound pictures of the baby’s kidneys.

Helen Osborne: Some very concerned parents are coming to you and you’re saying, “This is common.”

Dr. Emilie Johnson:And no big deal.

Helen Osborne: Or it could be that they say, “We heard this is not a big deal,” and you say, “Wait, something needs to happen here.”

Dr. Emilie Johnson:You are absolutely right. You’ve distilled it perfectly.

Helen Osborne: You’re the guru in this. You’re in that moment. I don’t know how long your appointments are, but someone has probably waited a while and built up in their mind how important it is to see you. What do you do when there is this wide range of worry?

Dr. Emilie Johnson:One thing I’ve learned over time is to have the patients tell their story a little bit at the beginning of the appointment. Within that, it helps to give me a sense of what they’re most worried about.

I’ll give you an example of how I learned this. I have gone through a few appointments where we’re discussing this condition, this hydronephrosis condition, and I’m reviewing the X-rays with the family and talking about the condition.

Toward the end of the visit, they say, “Is my baby going to need a kidney transplant? Should I be evaluated to see if I’m a kidney donor?” To me, what I was reviewing, that was never even a possibility that I thought of.

Helen Osborne: When you were telling me the story, it was like, “Of course. I think I’d ask the same question.” You’re coming at this from very different perspectives.

Dr. Emilie Johnson:Absolutely.

Helen Osborne: This is their child, but you have many appointments during the day, during the week and over your career. You see this a lot.

Dr. Emilie Johnson:Right. Rather than finding out 20 minutes into a 25-minute appointment that they were worried the whole time we were talking that their baby might need a kidney transplant and maybe not hearing anything else that you said because they were so worried, perhaps if I had asked and addressed that up front, to say, “Just so you know, I am not thinking this is likely to ever happen,”

I think putting the fears that might be unfounded to rest at the beginning so that we can focus on the information that’s most relevant to their child today is a helpful strategy that I’ve learned.

I really try to understand where they’re coming from first before I start talking too much.

Helen Osborne: Interesting. Do you ever get concerned that that part will take so long you don’t have time to get to the rest?

Dr. Emilie Johnson:Of course. However, if you’ve said a whole bunch of things that no one heard, that’s not a good use of time either.

Helen Osborne: I’m so glad you said that.

Dr. Emilie Johnson:Also, if you think that you’re about to wrap up an appointment and then you find out that you have a family that’s worried their child needs a kidney transplant, that’s a long conversation.

Helen Osborne: Thank you for putting that into perspective for all of us.

Tell us what else you do. You start by finding out what their fears and probably expectations and assumptions are. You also said you have the X-rays there, so you have some visuals. Are there decisions that need to be made when a child has this condition?

Dr. Emilie Johnson:There are, yes.

Helen Osborne: Does it range from not doing anything to some kind of intervention?

Dr. Emilie Johnson:Absolutely. Most typically, the sorts of decisions that we’re making have to do with whether the child should be on a preventative antibiotic to prevent a urinary tract infection, for example.

Also, there are decisions about whether we’re going to pursue other tests besides ultrasound. In particular, those that might involve radiation, which can be a hard decision for families.

Helen Osborne: That’s what you’re leaning toward, and you’re hoping at the end of that 25-minute appointment that those decisions are made. Is that your expectation for that time together?

Dr. Emilie Johnson:Let’s just say hypothetically this is the first time I’m meeting the family. Most of the time, we would at least make one or two of those types of decisions during the initial visit. But often we don’t need to make every decision right at that moment, which is nice. It gives a little bit of space for a dialogue and some thought on the part of the family.

Helen Osborne: This first appointment. You’ve never met them before. You don’t have a relationship with them, as opposed to a pediatrician, a primary care, where there has been an ongoing context for this. It sounds like this appointment where you are introducing information is also the time to begin an ongoing relationship. Is that correct?

Dr. Emilie Johnson:That’s absolutely correct. Almost all of the young babies that I see with this condition we see each other every three to six months or so over the first year of their life, if not more frequently in certain cases.

It’s one of my favorite things about my job, to see those babies grow and change so much over the first year of life and go through the journey with the families, even if the final outcome ends up being no big deal as far as long-term health consequences. It’s just a nice way to build a relationship with the families.

Helen Osborne: I’m listening as you’re talking about this. I don’t expect many of our listeners do exactly the kind of work that you’re doing. But we all care about communication, developing relationships and helping people make decisions that are appropriate for them in their situations.

Tell us some other strategies that you’ve learned that help make this conversation go more smoothly when there is this wide range of how people can be responding to it.

Dr. Emilie Johnson:In addition to making sure as best as possible that I understand what they understand and what they’re worried about, I also try to do a little primer on terminology.

One of the other problems with hydronephrosis as a condition is that there are about 20 different words people use to describe the same thing.

Helen Osborne: Really?

Dr. Emilie Johnson:Yes. I’ve used two, but there are many others. I try to make sure that families understand there are many terms so that they, as much as possible, don’t get tripped up or confused by the terminology.

Helen Osborne: Wonderful. Do you do that just through the spoken word, or do you do that through the written word? Do you have teaching tools? How do you do that?

Dr. Emilie Johnson:I do that through the spoken word at this point, although I went to a conference this weekend and I’m feeling reinvigorated to update my patient education materials.

Helen Osborne: Good.

Dr. Emilie Johnson:It’s not sort of traditional. It’s not a handout of “What is this?” but it’s more a handout that would say, “What other words have you heard to describe this one thing?”

I think it actually could be useful. For some families, it may be overwhelming, but for some, I actually think a written handout just on the terminology could be useful for this condition in particular.

Helen Osborne: That’s an important health literacy principle. I don’t know if the conference you went to was labeled health literacy, but I know you’re with us on this one.

Dr. Emilie Johnson:It was not a health literacy conference, but it was a very relevant topic at that conference I was at.

Helen Osborne: From a health literacy perspective, I am just relieved and appreciative that this is oozing into all the different fields about the importance of communicating clearly.

What other strategies have you learned that really work and you think other people might put into their practice, whether it’s clinical, public health or something like that, to communicate about health?

Dr. Emilie Johnson:I have to say I was very inspired by Dr. Gretchen Schwarze when I listened to her on your podcast from a year and a half ago or so.

Helen Osborne: Isn’t she wonderful? I’m going to have a link on your Health Literacy Out Loudweb page to hers.

Dr. Emilie Johnson:She talks about the best case, worst case and what’s most likely to happen. I realized that, informally, I’d sort of been doing that related to this condition, hydronephrosis, and others. I also realized that sometimes my families, though in different words, are actually asking for that.

Helen Osborne: I’ll clue in listeners a little bit and hope they listen to my HLOL podcast with Dr. Schwarze and click the links with those visuals. It’s a visual way of talking about hard decisions. In her case, it’s surgery.

It’s about what could go right, what could go wrong and where she as the doctor thinks the best case and worst case would happen for that person. It’s about personalizing a great deal of information about probability, risk, numbers and uncertainty.

Is that what you’re relating to about it? That’s my takeaway from what she was talking about.

Dr. Emilie Johnson:Absolutely. Interestingly, she takes care of a lot of folks who are perhaps approaching the end of their lives, who are quite frail and who are making difficult decisions about surgery.

The children that I see are in a different part of their lives. The sorts of conditions and decisions we talk about are quite different. But I find that framework really useful even though our problems and patient populations are quite distinct.

Particularly, if I think that a family is more worried than I am about a certain situation, it’s to say, “The best case scenario is that you’re going to see me every three months. I get to watch your kid learn how to talk, grow and run around, and this hydronephrosis will go away on its own.” That’s the best case.

The worst case is it gets worse. We have to get some other tests. They might have to have surgery, but if they have surgery, typically children do well. Then most likely would be the best case.

Most of the kids that come to me in this situation actually follow the best-case path.

Helen Osborne: How nice.

Dr. Emilie Johnson:I think that’s useful for families to hear.

Helen Osborne: As you’re describing, I also have this sense that you’re not acting as though you’re minimizing their concern. You’re saying, “Here is the best case, and here’s what we expect will happen,” rather than saying, “Why are you worried about that?”

You’re not dismissing them at all. You are validating their feelings that they come with, but then using a range of tools to make sense out of what this could mean medically and treatment-wise.

Dr. Emilie Johnson:I think that’s a really great summary.

I’m a parent myself and I’ve taken care of kids for years. I realize that nothing is minor if it’s your child. Even if, in the scheme of things that we see at a big children’s hospital, this situation is not grave, any procedure, any consideration of a test or anything that could be distressing or uncomfortable for your child is a big deal. I really take that seriously.

Helen Osborne: Thank you. I just learned so much from you. I get that wonderful presence from you, whether in person or over the phone as we’re recording this, about how to bring in that empathy, caring, respect and appropriate decision-making and information into all your encounters.

Thank you so much for being a guest on Health Literacy Out Loud. And even more, for doing all you do.

Dr. Emilie Johnson:Thank you so much for having me. It’s been a pleasure speaking with you. I really enjoy working together as we wrestle with some difficult questions that PCORI poses to us.

Helen Osborne: As we just heard from Dr. Emilie Johnson, it’s important to understand what that other person understands when we communicate. But doing so isn’t always easy.

For help clearly communicating your health message, please visit my Health Literacy Consulting website at www.HealthLiteracy.com. While you’re there, feel free to sign up for the free monthly e-newsletter, What’s New in Health Literacy Consulting.

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Until next time, I’m Helen Osborne.

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