Rheumatologists are accustomed to educating patients about medications—but biologic medications require some additional time and discussion. “Biologics are inherently more complex [than other medications], and there are multiple issues to consider before initiating treatment,” says K. “Kwas” Huston, MD, The Center for Rheumatic Disease, Kansas City, Mo. “This includes the patient’s disease activity, prior medications used, comorbidities, potential adverse effects, cost, patient preference and route of administration.”
Explore this issueFebruary 2017
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Because biologics pose more factors to consider, it’s even more crucial that health providers devote an adequate amount of time to patient education.
How It Works
Although every office is different, what often happens is that the rheumatologist broaches the subject of biologics. For example, in Dr. Huston’s office, the physician provides a basic understanding of biologics and their side effects and reviews information about cost and insurance coverage. This is also the time Dr. Huston talks about necessary vaccinations and screening tests (e.g., for hepatitis and latent tuberculosis). Then, a nurse or medical assistant teaches about subcutaneous injections and goes over when patients should hold their medication—such as when they have an infection, are undergoing a significant surgery or are contemplating pregnancy.
At his practice, Orrin M. Troum, MD, Providence Saint John’s Health Center, Santa Monica, Calif., finds that most patients come to the office with some concept of what biologics are. However, he always leaves in some extra time to discuss the medication.
Most offices use supplementary information, such as brochures or written materials, for patients to review. These kinds of resources come from nonprofit organizations and pharmaceutical manufacturers. Ellen Field, MD, Lehigh Valley Health Network, Bethlehem, Pa., leads patients to Joint Decisions, an online resource to help people who have rheumatoid arthritis (www.jointdecisions.com; Janssen Biotech).
“Before the patient leaves, I find it imperative to ask him or her to come back with a list of questions at the next time of their visit. They need some time to explore the educational sites and information available about treatment options, including biologics, to formulate their questions and concerns,” Dr. Field says.
The risk–benefit balance is an important component to broach when talking with patients about biologics, says Anca Askanase, MD, clinical director and founder of the Lupus Center at Columbia University Medical Center, New York. “There is a lot of angst over the side effects, and I believe it is the doctor’s job to alleviate the patients’ or families’ concerns.”
And Your Questions Are …?
Some common questions that rheumatologists encounter during discussion of biologics include:
- What are the risks vs. benefits of biologic therapy?
- How much will it cost?
- Will my insurance cover it?
- What is the risk for cancer if I use a biologic?
- What are the side effects?
- Can I do the injection myself?
- What does remission for my disease look and feel like? Will I ever be able to discontinue treatment?
- How can treatment with biologics fit in with alternative medicine approaches? Can I first try non-biological treatments and see how they work?
- Why might the treatment sometimes stop working? What would happen next?
The cost issue is especially concerning to patients, Dr. Huston says. “We all see patients who would benefit from biologic therapy, but cannot access these drugs due to high cost and inadequate insurance coverage. Ensuring access to treatment is one of the more important challenges we face,” he says.
In addition to answering the questions above, rheumatology providers also typically address what happens if biologics are not used properly—for example, what happens if patients still use a biologic while they have an infection (whether knowingly or not).
Patients may form inaccurate opinions about biologics, because when the medications are advertised direct to consumers, they include an exhaustive list of possible side effects and adverse reactions out of context. Many patients also do research on the Internet and gather information from both reliable and unreliable sources, says Adena Batterman, LCSW, clinical social worker and senior manager for Inflammatory Arthritis Support and Education Programs, Hospital for Special Surgery, New York. “That makes it more challenging to put these treatments and risk profiles in context,” she says.
Among all the questions and concerns, rheumatologists must make patients the copilot in the decision-making process to improve compliance, Dr. Field emphasizes.
Although rheumatologists are well versed in discussing biologics and patients take them seriously, misuse issues sometimes can occur.
Dr. Field has found out about patients in her practice who have administered self-injections while sick, changed the frequency of their injections and neglected to get timely lab studies and office follow-ups.
“We address potential misuse issues, particularly with self-injectable biologics, during the patient’s appointment, but it could always be improved or supported by more patient education,” she said.
Although Ms. Batterman has not seen specific misuses of biologics, she has spoken with patients who were not well-informed about inflammatory arthritis as a systemic illness or the rationale for the use of biologics.
“I have worked with patients who did not understand that biologics treat a progressive systemic illness,” she says. “Instead, some patients can be under the assumption that if they can tolerate the joint pain and some other symptoms they experience, then they can delay or do without treatment with a disease-modifying anti-rheumatic drug [DMARD] or biologic.”
Dr. Troum has had patients tell him that they took their biologic when they had an infection because no one told them not to do so. Although the latter may not be true, it brings home the point of reinforcing the potential for misuse, he says.
A 2016 study of 677 French patients with inflammatory arthritis found that certain factors were associated with lower self-care skills associated with biologics.1 Led by Anne-Christine Rat, MD, Lorraine University, Nancy, France, patients who lived alone, had a lower educational level, lived in a large city, were unemployed and did not receive written information had lower safety skills associated with the use of biological DMARDs.
“This study emphasizes that some patients are at risk of poorly managing their biologic therapy. These patients should be identified and monitored to avoid major and perhaps life-threatening complications,” Dr. Rat says.
Rheumatologists and their staff may need to remind patients more frequently about some of the misuse risks, Dr. Rat cautions.
Rheumatologists should remind patients to have patience with biologics in terms of allowing for effectiveness, managing side effects, and getting over the fear of self-injection, Dr. Askanase says.
5 Tips to Improve the Patient Education Discussion
1. Ask patients to bring a family member or friend with them, Dr. Troum advises. This gives the patient—who likely is still processing information about their disease—an objective person who will listen and ask questions regarding biologics. When a patient comes to the office alone initially, this sometimes means they must return for a second appointment to bring their companion. Dr. Troum is fine with this if it means they will be better informed about biologics.
2. Update your approach as needed. Dr. Huston finds that focusing too much on the risks of biologics scares patients away and that a balanced discussion of benefits and risks is typically needed. He also finds that patients often have preconceived notions about the medication and need their misinformation corrected. He alters his discussion based on perceived patient fears and preferences. “Some patients express a lot of anxiety and want to review biologic therapy in great detail, and others just say, ‘Whatever you think is best, doc,’” Dr. Huston says.
You may also change your education depending on patients’ lifestyle issues and financial challenges, Dr. Field says.
3. Tap into seasoned patients as resources for new patients. “Developing a ‘network’ can be a game-changer for my patients,” Dr. Field says. “We have our experienced patients available for support to our newly diagnosed patients. Patients considering biologics can tour our infusion suite and are encouraged to chat with patients who are receiving infusion therapy at that very moment,” Dr. Field says. “Many patients develop friendships that are quite helpful through their RA treatment journey.”
4. Think about new, useful ways to present medication information. In addition to the usual discussion and written material, the U.S. National Library of Medicine suggests several other teaching tools, including podcasts, YouTube or other videos, PowerPoint presentations, posters or charts, models or props, group classes and trained peer educators.
“Appropriate, effective patient education really requires a multidisciplinary and integrative approach using several modalities,” Ms. Batterman says. For example, support and education programs offer an opportunity to obtain support from peers who understand the complex concerns of fellow patients, with the benefit of healthcare professionals gently guiding the discussion. Nurses can provide further clarification and answer questions; social workers can assess and further explore issues around coping with chronic illness and treatment, which can impact patients’ understanding, decisions and adherence in a profound way.
5. Always consider health literacy, Ms. Batterman advises. You may think that patients will understand certain material presented when they actually don’t. “Several techniques, including ‘teach-back’ techniques, can be used to ascertain whether the patient has integrated the information and provides an opportunity to clarify key points,” she says.
6. Don’t just hand them a brochure. “Written materials and pamphlets, while helpful references for patients, often go unread if offered as a replacement of a thorough, open discussion rather than as supplementary information,” Ms. Batterman says.
Vanessa Caceres is a medical writer in Bradenton, Fla.
- Rat AC, Fautrel B, Flipon E, et al. Factors associated with knowledge and safety skills of arthritis patients receiving biologics: A survey of 677 patients. Joint Bone Spine. 2016 May 26 [epub ahead of print].