Self-management for lupus, lupus nephritis demands patient communication, accountability
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With many patients avoiding in-office visits due to COVID-19 concerns, self-management in lupus is more important than ever, according to a presenter at the 2020 Rheumatology Nurses Society Annual Conference.
“I had the opportunity to be part of an ACR research group to develop a self-management program for people with lupus and lupus nephritis,” Linda Grinnell-Merrick, MS, NP-BC, the lead nurse practitioner in the division of allergy, immunology and rheumatology at the University of Rochester Medical Center, said in her presentation. “Now, more than ever, this seems to be really appropriate.”
The result of that collaboration is the Lupus Initiative, a one-stop resource for clinicians, patients, supporters and educators on all facets of the disease.
In her presentation, Grinnell-Merrick zeroed in on the self-management components of the site, described the benefits of self-management in this patient population and shared skills and resources to help providers teach patients to help themselves in the hospital and outside the clinical setting. “Self-management in lupus is a combination of information, guidance and encouragement,” she said.
Looking at some common patient scenarios, Grinnell-Merrick suggested that treatment planning and adherence are among the most important skills a patient can develop. “You want to figure out barriers to adherence, whether they are financial, family-related or work-related,” she said. “Patients also may not understand the disease process, or even understand how our health care system works.”
Once the patient has been educated about the fundamentals of lupus and management of the disease, setting goals and then using communication tools to track and monitor progress is critical. “There are all kinds of things that can be done with their smartphones,” Grinnell-Merrick said. “They love their smart phones, and we should use this to our advantage.”
Patients should be encouraged to keep tabs on their blood pressure and weight, their symptoms and their medications.
But the onus is not entirely on patients to manage their own care, according to Grinnell-Merrick. “It is important to understand the role of health care professionals in self-management,” she said.
Sharing resources and staying up to date on advances and best practices is one way practitioners can help in self-management. Conducting effective and efficient medical office visits is another. “You want to have good communication with the patient,” Grinnell-Merrick said. “But you also want them to be held accountable for their behavior.”
Another key component is helping patients understand their physical symptoms. “We want our patients to understand what a flare is,” she said. “Also, we should explain the side effects of the medications they are taking so they know what to expect.”
Lifestyle management also should be a cornerstone of the education process. “This is a young group of people we are dealing with,” Grinnell-Merrick said. She suggested that providers must talk to patients not only about diet, exercise, smoking and alcohol consumption, but also about family planning and pregnancy.
Grinnell-Merrick urged attendees to pay attention to the patient’s medical history. “You can see how many appointments they have made versus those that they missed,” she said. “You can see whether their family or a support system is involved, the questions that they have asked in visits, the medications they are taking. This is a wealth of information.”
“Engaging individuals to be active participants in their health care is so important right now, when we are not seeing our patients enough,” Grinnell-Merrick concluded. “Self-management can be empowering, increase adherence and, ultimately, improve patient quality of life.”
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Grinnell-Merrick L. Empowering People Living with Lupus and Lupus Nephritis through Self-Management Support. Presented at: Rheumatology Nurses Society annual conference; August 5-8, 2020 (virtual meeting).
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