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!

Lupus Foundation of America and RN.com Launch New Lupus Education Program

Program provides lupus education to nurses, pharmacists, and pharmacy technicians

The Lupus Foundation of America (LFA) announced today the launch of a new continuing education program entitled, Lupus, Deciphering the Clues, co-developed with RN.com and RxSchool.com, and Dr. Mary Anne Dooley, Member, LFA’s Medical Scientific Advisory Council. The program will provide an overview of lupus diagnosis and treatments for nurses, pharmacists and pharmacy technicians. The goal is to make health professionals more aware of lupus so it is recognized and treated earlier, and educate them on the treatment options available for people with lupus.

“This program helps to fill the great unmet need there is for medical education about lupus in the health community, which is essential to ensuring that people with lupus are diagnosed and treated early,” said Sandra C. Raymond, President and CEO, Lupus Foundation of America. “We also want to thank RN.com and RxSchool for their collaboration and partnership on this exciting project.”

It can take years to diagnose lupus. More than half of the people with lupus visited three or more doctors and suffered four or more years before being diagnosed. There is no single test to diagnose lupus, and symptoms, such as fatigue, skin rashes, joint pain and hair loss mimic other conditions, appear differently in different people, and can increase or decrease in severity from day to day.

The program will be provided for free for the month of April. To register or for more information visit, lupus.org, RN.com, or RxSchool.com.

About RN.com and RxSchool RN.com and RxSchool.com make up one of the premier web sources dedicated to providing the nursing, pharmacy and pharmacy technician community with a comprehensive collection of professional education and information resources that our members can use to better their professional career.