|Dr. Joan T. Merrill, Medical Director|
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!