The Importance of Minimizing the Communication Gap

by Joan T. Merrill, MD

Dr. Joan T. Merrill, Medical Director

Several years ago the Lupus Foundation of America collaborated with Lupus Europe and the biopharmaceutical company UCB on a survey of people with lupus. In the United States, 531 patients participated. Most (93%) were women, 86% were between 20–50 years old, more than half were married and almost as many had children. If you were to take a poll of patients in my clinic, this would pretty well describe them.

So how did 531 people with lupus think they were doing? 69.2% said that they have 3 or more flares each year. The most common problems reported included fatigue, arthritis, muscle pain and skin rashes. More than half of the participants reported depression. When asked about current medications, only 44% said that they were satisfied and 45% reported that their treatments impair daily activities or work.

But when I ask my patients how they are doing, most will say pretty well. Maybe they will report some symptoms, but will often blame the weather or stress, making it easy for me to assume that that nothing important happened. But in a busy clinic, that may be exactly what I want to believe. So most of the time, the medical visits with my patients are pleasant and fairly routine. And if you look at the medical literature, you are unlikely to see reports of more than one or two mild-moderate flares/year per patient.

Well, we know that the patients disagree about that. In fact, several studies of lupus have found that patients opinions on how they are doing are completely mismatched with those of the doctors. Doctors who work on clinical research express frustration that patients have trouble differentiating chronic damage or depression from lupus flares, and the disconnect between doctors and patients opinions is often attributed to this. But are we certain about who is making which mistake?

Most clinical trials in lupus find that only 40-50% of patients meet the cutoffs we (the doctors) set to define improvement. What do we think is happening to the other 50-60%? Are doctors missing lupus flares because we are not as good as we think we are at recognizing what is lupus and what is “other?” Another poll of patients with lupus was performed by the pharmaceutical company GlaxoSmithKline. This survey found a three way breakdown of communications, with patients minimizing their symptoms both to their doctors and their families. This can’t be helping the doctors to recognize flares. What can be done about this?

It might be difficult to make doctors listen better or to convince patients to risk the emotional discomfort of complaining. But what if there was an efficient written tool to accurately track symptoms and responses to treatments, both from the doctors and the patients perspectives? This might be set-up to clearly distinguish lupus problems from non-lupus problems and supplement information that is lost during intermittent, time-limited clinic visits. The Lupus Foundation of America is dedicated to solving the cruel mystery of lupus and developing tools for patients and doctors to improve communication. We welcome input about what you think and what type of tools would help ensure successful communication with your doctor. Leave your comment below with your ideas!

Loss and Hope: Find Your Balance

The other day I listened to a teleconference on the results of a nationwide survey of more than 950 people in the lupus community—502 people with lupus, 204 supporters (family members or friends) of people with lupus, and 251 rheumatologists. The survey was designed to “evaluate the daily and long-term impact of lupus on health, family relationships, career, and quality of life, and to identify potential gaps in communication.” The results showed that “communication challenges are significant.” You can say that again!

• 87% of people with lupus in the survey admitted minimizing their pain and other disease-related concerns to avoid upsetting their families, and 52% reported that they minimize their symptoms when they talk to their physician. Yet, 72% of the rheumatologists surveyed were not aware that their lupus patients are minimizing their symptoms!
• 76% of the physicians believed it is the severity of lupus symptoms that has the most impact on people with lupus, but only 59% of the people with lupus agreed with that.
• 51% of those with lupus reported arthritis/joint pain as the most prevalent symptom to affect them on a daily basis, only 35% of doctors ranked such pain as highly prevalent.

Regrettably, the communication disconnect is happening with family and friends, too:

•  46% of those with lupus said they experienced fatigue on a daily basis, yet only 22% of their supporters saw this as a prevalent symptom.
• 75% of those with lupus said that family and friends think they (the person with lupus) can do more than they actually can; 80% said their family and friends think lupus can be improved by eating better or exercising more; and 67% said their family and friends believe they can identify with living with lupus.
• 78% of supporters describe themselves as “very supportive” of family and friends with lupus, while 52% of those with lupus felt that way.

I have a theory. I hypothesize that these disconnects may be due to our own unwillingness to show weakness. I mean, who wants to constantly be asking for help? Or talking about the pain? Or admitting that we forgot—again? More than half (57%) of those with lupus said the disease significantly impacted their self-worth. Do you really think we want to add to that by openly cataloging our every complaint? I for one am ready to admit it: I don’t share even half of what’s bothering me. And that’s not good.

It’s just that I don’t think people without lupus understand how hard it can be to let go of what we can no longer do. It’s been 19 years since I was diagnosed with lupus, and still every day I feel loss. I was angry for so long and I didn’t even know it. But that is not a healthy frame of mind, especially when you have lupus—a disease that is activated by stress. Indeed, the occurrence of stressful events has been linked to disease flares. The therapists and psychologists tell us it’s okay to grieve for our losses. But eventually we must focus on what we can do.

But there’s a remarkable thing about people with lupus—one that will always show up on any survey because it is a hallmark of this mysterious and complex disease: More than half (56%) of people with lupus reported feeling hopeful or optimistic.

As for me—well, to help make up for those things that are out of my reach now, in the past two years I have started to do some brand-new things, which helps me not miss the old things as much. I’m gradually sharing my lupus story in this blog. I started a coloring card business that will debut soon at designs2color.com (motto: you are never too old for crayons!), and began dating a wonderful (younger!) man who makes me laugh all the time, but also accepts me as I am. And because I used to be a wild child, I am learning to play the electric bass guitar. Take that, lupus!

Visit the Lupus Foundation of America's Web site for the rest of the survey’s findings.