Self-management of lupus patients takes a village


Empowering lupus patients to take charge of their health isn’t just about handing them a pamphlet. The complexity and high mortality of this disease call for a more interactive solution. Physicians need to engage patients as partners, educate about disease, and provide access to health-literate resources. Three speakers discussed the current climate of self-management programs for lupus patients at the American College of Rheumatology’s ACR Convergence 2020 virtual conference in early November.

A session titled “Tools and Techniques for Patients’ Self-Management of Lupus and Lupus Nephritis (LN)” featured talks by Irene Blanco, MD, fellowship program director and associate dean for diversity enhancement at Albert Einstein College of Medicine, New York; Christina Drenkard, MD, PhD an associate professor at Emory University, Atlanta; and Victoria P. Werth, MD, professor of dermatology at the University of Pennsylvania, Philadelphia. Sam Lim, MD, MPH, clinical assistant professor of medicine at Emory University moderated the session.

“Disease management is a proven way to improve quality of life and clinical outcomes for people with chronic disease. Successful self-management requires patient engagement, empowerment, and knowledge building,” Dr. Werth said. Ideally, physicians and patients should become partners in self-management.

Doctors and patients often have different expectations about self-management, however, which can lead to gaps in care, Dr. Drenkard said. It’s imperative that providers start thinking more about self-management, encouraging their patients to rely on resources that offer many different points of view. “To effectively self-manage the disease, change health-related behaviors, and learn new skills to incorporate self-management tasks, the person needs to believe that those changes are important and necessary.”

Dr. Irene Blanco

Dr. Christina Drenkard

Dr. Victoria P. Werth

Anatomy of the lupus patient

Patients with lupus or lupus nephritis (LN) often find it overwhelming to manage their disease, Dr. Drenkard said.

LN occurs in up to 60% of patients with systemic lupus erythematosus (SLE) and affects almost every part of the body. Most patients who develop LN do so within 5 years of an SLE diagnosis. Up to 30% of patients with LN progress to end-stage renal disease within 15 years of diagnosis.

“It is one of the most severe organ manifestations of SLE,” she said.

Although survival rates of SLE patients have improved significantly, overall mortality for SLE is threefold higher than for the general population. “Renal disease is one of the major causes of increased mortality in SLE. Diagnosis and treatment as well as the clinical trajectory of LN are complex, and differ among patients,” Dr. Drenkard said. Physicians often conduct multiple evaluations between the first symptoms and the end of a patient’s life.

Patients’ self-management behaviors depend on multiple factors, including how acutely the patient understands the disease and its symptoms, and the extent to which the disease is running the patient’s life. Beliefs about the health care system, providers, and their strategies are critical to changing behavior, she stressed.

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‘Whatever you say, doc’

Self-management refers to the individual’s ability to manage symptoms, treatments, and the physical and psychological consequences of living with a chronic condition, Dr. Blanco said.

It’s an important skill, given that patients overall are living longer with chronic illnesses. They’re spending days instead of weeks in the hospital. Once home, they’re expected to manage their symptoms.

“For shared decision-making to occur between patient and provider, patients need to develop self-efficacy and autonomy. Self-management education can impart these lessons,” she said.

Getting lupus or LN patients to adopt such a program isn’t always an easy task. Oftentimes, these patients defer to their treatment teams. The attitude is “whatever you say, doc,” Dr. Blanco said. Patients should learn how to set their own goals or monitor their own symptoms, “but if you leave it just to the clinical care team, that may be difficult for the patient to adopt.”

Doctors with paternalistic patient care styles might not even try to engage the patient as a partner.

Patients sometimes think they need to “tough it out,” or accept their pain or symptoms of disease. Goal setting or action planning may intimidate them. “Or, their relationship with the provider is challenged, where they may feel rushed or unheard, which leads to them not adopting the self-management program,” Dr. Blanco said.

Doctors often don’t have the time or resources to teach patients about self-management strategies and techniques, the speakers emphasized. In a needs-assessment survey of 3,000 patients and caregivers conducted by the Lupus Foundation, 65% who wanted more resources said their physician didn’t have time to address their needs, Dr. Werth said. Additionally, 57% said their doctor didn’t recommend any resources to them.

Some physicians don’t know where to direct patients for resources. Others might not be aware of programs and content. Instead of directly engaging with the patient, they might refer out of the office for self-management programs, sending patients to social workers or other settings.

In the Lupus Foundation survey, patients overwhelmingly sought lupus-related information online, Dr. Werth said. Still, many often struggle to interpret information they extract from the Internet.

When patients Google “lupus” or “renal disease,” they can get lost in a sea of resources that may not necessarily be pertinent or tailored to lupus, Dr. Blanco observed. Very often, materials aren’t very health literate, presenting scores and percentages that may confuse patients.

What a self-management program should deliver

According to Dr. Blanco, an effective self-management program addresses the following elements:

• Information about the disease.
• Drug and symptom management.
• Managing anxiety, depression, and anger.
• Lifestyle issues.
• Psychosocial support.
• Communication with a patient’s environment and providers.

“Programs can be individual or group, in person or online, high or low tech. It really doesn’t matter, as long as we tailor the program to the lived reality of the patient’s disease,” she advised.

If a treatment regimen is very complicated, for example, the program should offer steps to take patients through that regimen. “If a patient feels isolated, a group environment might help them instead of an individual program,” Dr. Blanco said.

Different self-management programs look for different outcomes. Typically, a program focuses on information about treatment and symptom management. Do these patients have fatigue or pain? Were they able to lose weight and manage their blood pressure? Have they been able to manage their anxiety or depression? Has their quality of life improved? “In terms of their medication, do we see increased uptake and adherence to medications? Do we see them using rescue and emergency medicines a lot less?” Dr. Blanco summarized.

“We also want to see self-management behaviors,” she continued. Is the patient more assertive? Are they communicating what they want when speaking with their physicians?

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The Lupus Initiative

The ACR in recent osteoarthritis guidelines has endorsed patient self-management systems. “Self-efficacy and self-management programs have been shown to be effective for hand and knee and hip osteoarthritis,” Dr. Blanco said.

Other programs have advanced self-management of LN and lupus patients by seeking input from physicians and patients.

Several years ago, the Lupus Initiative (TLI), an awareness and education program spearheaded by the ACR, received funding from the Centers for Disease Control and Prevention to develop and disseminate programs that build sustainable lupus awareness, knowledge, skills, and partnerships. As a result of this support, TLI developed the Lupus Nephritis Self-Management Project, an effort to identify self-management–related needs of people with LN, and gaps in resources. After convening a work group of patients and providers, organizers learned that both groups shared a desire for enhanced education about these conditions.

Providers stressed a need for patients to understand their disease and treatment trajectory, to learn more about the medications they take and their subsequent side effects, and to practice healthy behaviors to protect their renal function. Patients, in turn, wanted to learn more about their renal function, as well as the inner workings of their care such as interpreting lab results, treatment options, the prognosis of each LN class, and how to establish relationships with and negotiate treatment with providers. They also had questions regarding access to medications, coping skills, family planning, and homeopathic remedies to preserve kidney function and minimize lupus symptoms, Dr. Drenkard added.

“What we learned from both providers and patients was to better understand the needs of people living with LN and the gaps in self-management resources,” she said.

With information from multiple stakeholders, TLI developed a resource tool that addressed four areas: understanding the illness and its treatment options, participating in the determination of a treatment plan, fostering adherence to the plan, and empowering patients to discuss ongoing symptoms and address challenges with the health care team.

What we learned from both providers and patients was to better understand the needs of people living with LN and the gaps in self-management resources.
With those objectives in mind, two resources emerged:

EMPOWER, developed for professionals to support care of LN patients. The resource offers training guides for clinicians and nonclinical professionals such as social workers and patient advocates. The guides offer four essential steps to support LN patients in self-management: understanding self-management and its benefits; recognizing the clinical health care professional’s role in self-management; using the patient’s medical history as a guide; and sharing resources and staying up to date on the latest LN news and best practices.

EMPOWERED, a self-management resource for patients with LN. The tool encompasses relevant and easy-to-use resources for patients, offering self-management video shorts, strategies to overcome challenges, and materials that cover the most relevant aspects of this disease.

TLI is developing a new campaign directed at rheumatologists, nephrologists, and members of the LN health care team to increase awareness of and willingness to use LN self-management resources in their practices. “Providers are also being encouraged to recommend these resources to patients as a tool to assist them in managing their LN symptoms,” Dr. Drenkard said.

Take Charge, SELF initiatives

The CDC has also provided funds to the Lupus Foundation to develop three self-management programs and resources: the National Resource Center on Lupus (NRCL), the Take Charge Email Series, and Strategies to Embrace Living with Lupus Fearlessly (SELF).

The NRCL website “serves people with lupus and their families, health care professionals, policy makers, and the general public,” Dr. Werth said. Its goal is to provide relevant, accurate, and up-to-date information on topics related to lupus. The content is easy to read and is available in English, Spanish, and Chinese.

Take Charge, a weekly email series, aims to increase self-management knowledge among individuals with lupus, particularly those newly diagnosed within the past year. The series addresses eight self-management topics, explaining what lupus is to friends and family, and helping patients to track symptoms and to prepare questions for upcoming doctor’s appointments.

When asked what they liked about the series or what they’d recommend, Take Charge participants responded that the content was easy to understand and digest, and gave them a fresh outlook on their condition. “It was helpful for me to know what to ask my doctor while we are figuring out my diagnosis. It was also helpful to learn the basics of life” with an autoimmune disease, said one patient. “When I was diagnosed, I knew nothing about lupus,” said another patient who couldn’t get access to their physician for at least 6 months after experiencing a flare up. “Without this information I would have been lost.”

The SELF program, still in development, will serve as an online self-management program based on a proven model of behavior change, looking at stages of change. The platform will assist users in managing symptoms, stress, medications, and working with a health care team. At press time, SELF was undergoing a program evaluation involving 150 people with lupus. Dr. Werth anticipates the program will launch in the second half of 2021.

“These programs, in conjunction with physician input, acknowledge that everyone learns differently and has different levels of self-confidence and health literacy. By connecting patients with trusted and tested self-management resources, doctors can support their patients in self-management efforts outside of the clinic,” she said.

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Physicians as guides 

Successful self-management relies on patients and physicians alike to do their homework. Physicians can help patients by listening to and hearing their needs, providing tools to facilitate shared decision-making, and referring patients to appropriate resources, Dr. Drenkard said in an interview. “When goals and expectations are well aligned between patients and providers, it is more likely that the patient will adhere to the treatment plan,” she advised.

Physicians should take the time to educate themselves about self-management tools and strategies, Dr. Blanco said. “We don’t know how often a busy rheumatologist is doing that.” She also recommended that doctors and care teams curate the content that patients receive, so that they can find accurate, understandable resources. “If we can figure out how to harness a common resource bank to, say, ‘skin disease’ or ‘arthritis,’ we can really pick a plug-and-play model that patients can use.”

It’s also important that patients evaluate the content of a program and see what resources are available.

When crafting a self-management program, “there’s more than one way to skin this cat,” Dr. Blanco observed. “If you are creative and figure out the tools available to you, you can come up with a really great plan to roll out in your individual setting.”

Dr. Blanco and Dr. Drenkard reported no conflicts of interest. Dr. Werth is a member of the advisory board of the Lupus Foundation of America and an adviser on development of the SELF program.