Stuart Kassan, MD: Encouraging Self-Advocacy in Newly Diagnosed Patients

Rheumatology Research Foundation recently presented a patient webinar entitled, “Just Diagnosed: Now What?” which featured Academy-nominated screenwriter and patient Emily Gordon with rheumatologist Stuart Kassan, MD. Kassan is a Distinguished Clinical Professor at the University of Colorado School of Medicine.

Rheumatology Network: As a rheumatologist, what are some of the coping methods you can give patients who are newly diagnosed with a rheumatic disease?

Stuart Kassan, MD: The most important thing is getting good information. And good information will really be best derived from the treating doctor, but also some of the very reliable foundations that are available. So as an example, in arthritis, the American College of Rheumatology, Rheumatology Research Foundation, the Arthritis Foundation, Sjögren's Foundation, Lupus Foundation. All of those are very significant sources of information. But really the main source of every patient should be your treating physician.

RN: How can patients advocate for themselves during this journey?

KS: Well, again, being armed with information is key, but also asking good questions. Now, and I sort of have this as a theme in how I treat patients, you need to spend time with patients. The most important thing that can happen between a doctor and a patient is to spend quality time at the beginning of a diagnosis so that questions get answered appropriately and patients feel a little bit more comfortable as to what's going on. Information is key in this in this journey. That’s what it really is: a journey. And then also, I'm getting family involved because any of these diagnoses that people get with autoimmune disease affects families as well. And so, getting the family involved at the get go is very important.

RN: What are some of the barriers that you found that prevent patients from advocating for themselves within the healthcare system?

SK: I keep harkening back to the time thing, and in many clinics, time is not given to patients. And this is a stumbling block for a lot of patients, as well. But also, the other problem is getting bad information. And sometimes people will go on the internet and find various sites that don't give the true picture as to really what's going on. So that's a stumbling block as well. But again, I think getting time with your doctor is the key to really finding out what's going on and then asking good questions.

RN: How can you encourage self-advocacy to empower your patients?

SK: Well, doing some research. A lot of patients come in and say, “Gee, I don't really want to know anything,” because, especially when they're embarking on a new medication, they feel that if they know too much, then they'll experience those kinds of side effects. But again, ignorance is not bliss here. And so, you really want to know what's going on. Sometimes it's very difficult at the beginning of a diagnosis. As an example, when somebody gets diagnosis is diagnosed early with rheumatoid arthritis it can be pretty devastating in terms of those feelings. And sometimes people go into denial. And a lot of times it's the same kind of mechanism that people experience when they get a cancer diagnosis. You know, the stages of initially denial, anger, depression, and acceptance. And in a chronic disease, people go through those same processes as well. Trying to get over the denial piece is sometimes difficult. That's where we have to work with patients as well, in terms of trying to say, “Listen, this is really what you have and you really need to try to try to deal with this.”

RN: Do you have any tips on how to make the most out of a patient's appointment with a rheumatologist?

SK: I tell people to write things down because otherwise you're going to forget them. Sometimes, some doctors are sort of put off by patients when they come in with a list, but I encourage it. I think it's a good idea. The encounter of an office visit is sometimes intimidating and a lot of things that are going on in a patient's mind. Actually, they've done studies looking at what happens when a patient leaves the doctor's office and they retain maybe 50% of what was discussed. So sometimes writing it down and then trying to process it in that in that way is easier. Then you can get questions answered appropriately. And then when you leave, you don't have this feeling like, “Gee, I forgot to tell them this or that,” that kind of thing.

RN: I can imagine it's an overwhelming experience in general. Is there anything else that you would like our audience to now?

SK: Well, the time element is really important. You want to try to get an office visit where there's a fair amount of time allotted to you, number 1. Number 2 is I encourage patients to bring family members, especially early in their in their diagnosis, so that everybody appreciates what's going on. And 2 heads are better than 1. When you leave an office, it's better to have somebody else to sort of bounce this off of and say, “Did he tell you this or that?” and to discuss that kind of thing. Those are very important things as well to bring away from an office visit. Also, part of the time thing is you want to sort of discuss what's going on. Very often at the end of the visit, patients sort of remember other things that come up and those are important things to key into as well because, often, one of the more important things that happens at the end of the visit when a patient says “oh, by the way,” that's often the most important thing that is actually on their mind and it just didn't come to them at the get go.