Diagnosing Lupus in a Primary Care Setting

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Ms. Richey

There have been great advances in the treatment of systemic lupus erythematosus (SLE) over the last four decades, but it’s not always an easy diagnosis. In some cases, years can pass before a patient gets an accurate diagnosis.

In nearly every case, a primary care provider will be the physician who first recognizes the signs and symptoms of lupus in a patient. In a presentation given at the Rheumatology Nurses Society annual meeting held earlier this month,  Monica Richey, MSN, a rheumatology nurse practitioner with Northwell Health in New York, discussed the importance of augmenting the focus on lupus, particularly in primary care, as well as treatment challenges.

In this Q&A, Ms. Richey discusses some of the important points of her talk.

In today’s healthcare environment, why it is important to maintain a continued focus on lupus?

“There are more patients being diagnosed with autoimmune diseases, and lupus is still an under-diagnosed disease. It can take 18 months or more for a patient with lupus to be properly diagnosed. And, because lupus can have many different presentations, diagnosis can be difficulty and lengthy.

Primary care providers are usually the first providers to see these patients, and they need more education on ordering labs and when to refer a patient to a rheumatologist. Currently, we have more diagnostic tools and treatment than we had 15 years ago, meaning the lupus patient has a much better prognosis than he or she did back in the 1980s or 1990s.

What is important for primary care providers and nurses to know about lupus?

“All primary care providers should suspect lupus when two or three organ systems are involved. If a patient comes in with fever, anemia, and joint pain, do the blood work or refer him or her to a rheumatologist. We have a new lab called Avise to analyze for the entire lupus panel plus connective tissue diseases. Often, primary care providers don’t know exactly what tests to order, so they don’t order everything they should. That leaves the rheumatologist without all the information to reach a well-informed conclusion about a patient. Some patients can end up thinking they have lupus when they don’t.

Providers should remember lupus symptoms vary widely. Fever and hair loss, malar rash are the most expected, but now always seen. There are a plethora of symptoms. Fever, joint pain, severe fatigue, and sometimes the kidneys are involved with lupus nephritis or there’s some other organ-threatening disease. Providers can sometimes mistake the problems for an infection, and that can delay treatment. So, it’s important to consider screening anyone who presents with fever, joint pain, rash for lupus. 

As for treatments, after a 60-year gap between medications, we have quite a bit in our arsenal now, as well as a very strong pipeline with the pharmaceutical companies. They’ve picked up on the lack of medications we’ve had, so more money is being invested in lupus treatment. Almost every company is trying to find a new medication for lupus. But, we do face a problem that a lot of our drugs are still being used off-label. That can create trouble with the insurance companies that won’t want to pay for it. So, providers will often need to think outside the box on how to use therapeutics.”

Next page:  Challenges associated with a lupus diagnosis

As a complicated disease, lupus presents many challenges. What are the most significant ones providers face?

“The fact that lupus can change so much is a significant challenge. You can start treating hair loss and fatigue, and you can progress to dealing with lupus nephritis, heart disease, or some other complication. The disease is an up-and-down curve that doesn’t follow a straight path or pattern.

The second problem is patient adherence. Some lupus patients have six, seven, eight pills a day. These are young men and women, and they don’t want to take all those pills. So, it’s going to be hard for them to be compliant. Providers must work hard to educate patients so they understand the importance of taking their medication and the consequences of not taking it.

The third problem is access to care. Insurance companies don’t often understand that certain medications for necessary, so they frequently deny coverage. Providers may find themselves making several calls and sending texts or letters to get medications approved. In the meantime, the patient’s disease is only getting worse. This could become a bigger problem as more and more medications come to market. Plus, if a patient loses coverage or they start a new job, they have to start the process all over with insurance companies. This is becoming a really big part of lupus treatment. That’s why it’s critical to send insurance companies as much information as possible - patient tests, lab work, biopsies, everything. The more documentation you send, the less likely they are to deny coverage.”

To ensure lupus patients receive the highest level of care, how can rheumatology providers tailor how they approach patient interactions?

“Providers can’t just prescribe a medication to a patient and say, ‘Take this.’ Today’s patients need to know what they’re taking, why they’re taking it, what the side effects will be, and how it’s going to benefit them. For example, mycophenolate is six pills a day, but patients might take one or two. They need education on why they should take the drug. We should try to understand things from the patient’s point of view, and listen to them about why they aren’t taking the medication. If patients say they can’t swallow a pill, it doesn’t matter what’s prescribed because they won’t swallow it. So either liquid form or IV/injectable medications maybe work better. Price maybe a problem as well, high co-pay or not covered medications. Communication is the most important tool, so we all are in the same play field. Also providers must be willing to meet the patient halfway.”

Lupus requires close, long-term management, so what can providers do to stay ahead of the condition?

“No two cases of lupus are going to be the same. Lupus can throw curveballs, and providers need to expect them. A patient who has been stable for five years can completely turn on a dime, sending providers back to the drawing board. Is it a new or other condition, such as diabetes, heart disease, or HIV, or is it their lupus affecting them differently. Providers can’t just expect a patient’s lupus to stay the same. They must be ready for anything.

Communication is also critical. Know what’s going on in the patient’s life so curveballs don’t hit quite as hard. If a patient disappears for more than three months, call them to see what’s going on. Maybe they’re doing really well, maybe they lost their insurance. It’s when patients don’t come in that they can develop complications, prompting curveballs. That’s why communication outside those office visits is so important.”

What are your take-away messages for our healthcare audience?

“Remember that lupus is a complex disease, and the patient must be referred to a rheumatologist. That rheumatologist must work closely with other specialists to best manage the patient overall. The primary care provider also holds an important place in the patient’s life because that doctor will likely have to manage a lot of co-morbidities. Regardless of patient management, always expect that curveball. Well-managed disease won’t always stay that way. Just be sure to educate and stay in touch with patients to ensure they have the best outcomes possible.”