Counseling program to promote education and lifestyle change in lupus patients

According to a new study by Hospital for Special Surgery investigators presented at the American College of Rheumatology meeting on October 21 in Philadelphia, most lupus patients are not aware that their condition puts them at a higher risk for cardiovascular disease and a counseling program is a valuable way to promote education and lifestyle change.

"Lupus patients are battling systemic inflammation, which in itself is a risk factor for cardiovascular disease," said Doruk Erkan, M.D. the program's director and co-director of the Mary Kirkland Center for Lupus Care at Hospital for Special Surgery in New York. "But many of them do not know their risk, so it is extremely important to get counseling to manage risk factors such as smoking, obesity and hypertension, which may help decrease their chances of cardiovascular disease."

Launched in March 2009, the Cardiovascular Disease Prevention Counseling Program for Lupus Patients helps lupus patients think beyond their primary condition and take steps for future wellness. To assess the impact of the program, patients were given satisfaction surveys at the end of their initial visit and asked to rate aspects of the program, including quality of counseling and educational materials, likelihood of recommending the program to others, and improvement in the patient's knowledge about cardiovascular risk. Overall, the results of the survey showed that patients were well satisfied with the free counseling program.

"Out of 27 patients, 25 - or 93 percent - have filled out the satisfaction survey," said Virginia Haiduc, M.D, the program's coordinator. "We found that over half of those patients were not aware that lupus was a risk factor for cardiovascular disease. This program educates them about that risk and then helps them begin to decrease other risk factors that they have control over, such as poor diet and lack of physical activity."

Monica Richey, R.N., ANP-BC/GNP-M.S., the program nurse, feels that the counseling not only helps lupus patients change their behaviors and lifestyle, but also extends to those around them. "One young woman who came to our program was 24 years old, morbidly obese and had three kids," Richey said. "The next time she came back, she brought her kids because they were all upset with me. She had gone home and thrown out all the soda, cookies and chips. She was helping the whole family make a change to a healthier lifestyle."

Based on their chart and information gained during the appointment, patients may also be referred to a nutritionist or a physical therapist to help them make changes that will lower their risk for cardiovascular disease. Sotiria Tzakas, M.S., R.D., CDN, from the Nutrition Department and Josephine Park, MSPT, OCS, from the Rehabilitation Department are consultants for the program and co-authors of the abstract being presented.

The authors say that their study highlights that programs designed to help patients understand the cardiovascular risks associated with lupus are very well received by patients. The counseling helps patients increase their knowledge and begin to make behavior changes.

"Physicians should recognize that patients do not understand their cardiovascular risk," said Dr. Erkan. "Educating them about these risks should be considered a part of standard lupus care. We would encourage other hospitals to create similar programs."

As the program continues, Drs. Erkan and Haiduc will also analyze clinical factors to determine whether, in addition to behavioral change, there is a decrease in the prevalence of cardiovascular risk factors in the patients who have undergone counseling.

The counseling program is jointly sponsored by Hospital for Special Surgery and the New York Community Trust. The program is one of the patient education and counseling programs within the new Mary Kirkland Center for Lupus Care, which also provides lupus patients with comprehensive, multidisciplinary assessments, support programs and access to clinical trials. For more about the program and the center, please go to www.hss.edu/lupuscenter.

Source: Hospital for Special Surgery