Hospital for Special Surgery in New York will present evidence of the advantages of such a specialized disease center dedicated to comprehensive lupus care at the 74th Annual Meeting of the American College of Rheumatology in Atlanta.
"Every time a patient comes in for an appointment, I am able to greet them personally, to find out what is going on in their lives and what may be bothering them that day," said Pretima Persad, M.P.H., manager of the Mary Kirkland Center for Lupus Care. "We provide patients with care that is personalized to their particular situation, such as pregnancy or psychological concerns. We want them to know that their care team is really listening to them."
In addition to check-ins with Ms. Persad before every appointment, patients meet with a nurse and a social worker at Hospital for Special Surgery. "Patients feel that they are being provided with an umbrella of care," according to Dr. Doruk Erkan, co-director of the Mary Kirkland Center. "In this centralized environment, the patient is the number one focus. We are treating the patient as a whole, not just the disease."
The physicians, nurses, social workers and research coordinators at the Mary Kirkland Center for Lupus Care at Hospital for Special Surgery know that treating patients with lupus requires the coordinated efforts of a number of health care professionals. "Each patient-care team member brings individual expertise but is aware that treatment of this chronic disease requires concurrent battle on multiple fronts," said Dr. Kyriakos Kirou, co-director of the center. "They are trained to expect the unexpected and to support patients who may be confused and frightened."
Lupus causes the immune system to attack the body's own cells, resulting in inflammation and tissue damage. The disease is unpredictable and periods of illness follow periods of remission with barely a warning that skin, heart, joints, lungs or other parts of the body are being harmed. Nine out of ten patients with lupus are female and the disease can affect virtually any organ system in the body, including the nervous, circulatory and lymphatic systems.
The Mary Kirkland Center is an ideal place for research coordinators to recruit patients for clinical studies, Ms. Persad noted. She stressed that, while participating in research studies that place a focus on the disease can be daunting, the patients know and trust the staff well enough that they are comfortable getting involved.
The Mary Kirkland Center also instituted a formalized educational experience for professionals. Physicians attend lectures focused on lupus and related conditions so that they are able to understand "lupus from the perspective of other specialties," according to Ms. Persad. Rheumatologists specializing in lupus care play an integral part in these lectures and in lupus case conferences.
One program that has benefitted from the multidisciplinary nature of the Center is the Cardiovascular Disease Prevention Counseling Program, available free-of-charge to all patients. Since lupus patients are at increased risk for cardiovascular events like heart attack and stroke, it is important to consistently monitor cardiovascular risk factors such as blood pressure. "Focusing on and addressing cardiovascular health and wellness makes a huge, positive impact in patients with lupus," said Dr. Erkan. "We're optimistic from our past successes that we can help push lupus symptoms into the background—literally and figuratively—when there are more pressing things on the minds of our patients."
Close to 200,000 people in the U.S. have Lupus, with women being affected nine times more than men. Women of Afro/Caribbean descent are affected three times more often than other ethnic groups. Lupus is an autoimmune disease that attacks multiple organ systems and connective tissues in the body, is incurable, but treatable, and most people with it will live a normal lifespan. The initial symptoms of Lupus are fever, joint pain and fatigue. About 30 percent of lupus patients have dermatologic symptoms, with 30 percent to 50 percent getting the characteristic butterfly shaped rash on the face. Another very serious complication is end stage renal disease (ESRD), and kidney transplants are common. Lupus can also be drug induced by quinidine, phenytoin (Dilantin), hydralazine (Apresoline), and procainamide (Pronestyl), but is fortunately reversible. Drugs used to treat lupus are frequently DMARDS (disease modifying anti-rheumatic drugs) such as Humira, Rituxan, Remicade, Methotrexate, and Enbrel; Steroids and other immunosuppressants help reduce symptoms as well, with examples being Belimumab and Atacicept. Painkillers are common and often necessary. An ANA (anti-nuclear antibody) blood test is frequently used to diagnosis lupus.