Support for Patients With Lupus

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Resources that can help educate patients with lupus about their diagnosis and encourage them to take a more proactive role in self-care.

Ronald van Vollenhoven, Prof. PhD: We haven’t been talking much about the patients’ perspective right now, but maybe we should talk a bit about it. That is certainly what has become very much in the foreground of lupus care, that patient’s journey through this disease, and how they can maybe experience symptoms for a long time without getting any help, and seeing different physicians without getting an answer. That can happen, and then eventually the diagnosis is made, and they still may be faced with a lot of questions. Do you have any kind of a special program for patients?

Fotios Koumpouras, MD, FACR: We do, yes. You’re quite right, lupus is a disease, much like, for example, sickle cell disease, which can sometimes affect adolescents who go into adulthood. That transition, by the way, between those years of one’s life is an at-risk transition for losing health care for a variety of reasons. But we understand, because there’s so much around coping with lupus, and patients can feel terrible, but externally look fine; but internally they’re having a lot of pain. Whereas their rheumatoid counterparts are limping with swollen joints, the patients with lupus can’t show that necessarily, but they’re feeling bad, and they feel like a lot of physicians aren’t necessarily able to understand their symptoms. A lot of the symptoms can be broad and bizarre in many instances, but they’re real.

We have a program called the Lupus Wellness Program, and this is where our patients will come, and in a series of sessions, usually 2 to 4 sessions, they meet with one of our nurse practitioners, and they discuss the disease, the diagnosis, the medications. And we incorporate preventive health strategies, management of hypertension, hyperlipidemia, fertility preservation, counseling around pregnancy. This really allows for patients to become more vested in their own self-care, they’re more educated about symptoms, because many of the symptoms that patients have of lupus are not from lupus, they’re just from regular things that people get. Certainly, we don’t want to treat them with steroids for things that don’t need that. And it incorporates a lot of those health strategies that are very difficult when you’re dealing primarily with medications and flares during your limited clinical visit. So we have a wellness program that we’ve incorporated, and it’s been very successful.

Ronald van Vollenhoven, Prof. PhD: That sounds great.

Fotios Koumpouras, MD, FACR: Yes, and it supports research.

Ronald van Vollenhoven, Prof. PhD: It sounds excellent. We don’t have a program quite like that. It sounds like something we might want to learn from you, and maybe we can take some pointers. We do have a program for patients with important questions of fertility and pregnancy. That is a program started by my colleague, Irene Bultink, MD, PhD, with the gynecologists and obstetricians together, which has achieved national recognition. We get many women, of course with lupus, young women in child-bearing age, with many questions about issues of fertility, “Can I ever get pregnant, how is it safer?” That is the kind of educational program that patients really do need, and for which there is a lot of demand, I would say.

Fotios Koumpouras, MD, FACR: Yes. I would think patients, young women or women of child-bearing age with lupus, are kind of a special category in the rheumatology realm. They have risk for pregnancy. A lot of our patients with rheumatic diseases, for example, they get better during pregnancy. Discussions around pregnancy, this risk around pregnancy, certainly can impact patients’ perception of their disease, their total well-being, and their potential for livelihood in the future.

Ronald van Vollenhoven, Prof. PhD: Yes.

Fotios Koumpouras, MD, FACR: I think rheumatologists need to incorporate maternal-fetal medicine and pregnancy counseling around patients, particularly if they have nephritis and they’re on drugs that need coordination for pregnancy.

Transcript Edited for Clarity