Telling a patient they have a chronic condition, such as rheumatoid arthritis (RA), is always difficult. “Patients react in different ways,” says Shailendra Singh, MBBS, rheumatology medical director of White River Medical Center, Batesville, Ark. Emotional responses include anger, frustration, disbelief, fear and depression. “On the other hand, some patients may feel relieved to finally know the cause of their pain. Assuring patients that there are effective treatment options, which can control the disease, reduce pain and help them stay active, reduces some of their fears and anxiety.”
Education Is Key
After sharing such difficult news with a patient, Vivian P. Bykerk, BSc, MD, FRCPC, rheumatologist, Hospital for Special Surgery in New York, finds it helpful to ask a patient what they already know about RA. Then, she’ll share facts about the disease and debunk any myths.
Dr. Singh says it’s important to convey that RA is a chronic progressive disease, which can lead to joint damage, deformity and disability if not adequately treated. “When we educate patients about the natural course of the disease, medications and their side effects—and the need for regular follow-up and blood monitoring—they usually better adhere to appointments and treatments, because they have a better understanding of the disease,” he says.
In addition, Dr. Bykerk says, “Providers need to offer hope, but also provide a reality check. Patients need to realize that RA could limit their abilities. Without understanding the potential effect of the disease, taking medication and other treatments for it becomes irrelevant.”
Dr. Singh uses visual aids, such as pictures or models of joints, to explain the disease process. Providing reading materials about the disease, which include information about symptoms associated with RA, is also helpful. He also explains to patients how to differentiate RA symptoms from other types of arthritis.
Discuss Treatment Options
Shared decision making between the provider and patient is ideal for managing treatment, Dr. Bykerk says. Patients should make therapy decisions that are consistent with their values and goals. When discussing medications, the goal is to get them into remission. And if that’s not completely achievable, the goal is to lower disease activity. “By controlling inflammation, pain will lessen,” she explains.
It’s vital to discuss how to best use medications, how long to try them and when to move on, as well as what can happen if treatment is not started or optimized. Dr. Bykerk notes that tapering therapy and reducing doses may be an option, but oversight is necessary.
“I like to emphasize that despite using a typical order of therapies, I tailor medication doses and changes to each individual patient and frequently reassess,” Dr. Bykerk continues. “I try to gauge [the patient’s] beliefs about medication, as well as their concepts about Western medicine and other integrative approaches. An early investment of time in these discussions cements a fruitful relationship and partnership that is more likely to improve adherence of the agreed upon treatment strategy.”
Management Beyond Medications
In addition to medications, making lifestyle changes and having a support system are integral components of RA management. Example: Weight management, dietary changes and exercise can all have positive effects. Because fatigue is a common symptom, Dr. Bykerk also discusses strategies for energy conservation and workarounds with patients to reduce unnecessary activities.
Dr. Bykerk helps patients compile their support team, which consists of nutritionists, physical and/or occupational therapists, social workers and support groups. Family members are also key members of the support team.
“I always encourage patients to stay active and work if they can, because research shows that patients who stay active and do regular exercise have less disease activity, and have significantly reduced rates of cardiovascular disease, mood disorders and secondary chronic pain syndrome,” Dr. Singh concludes.1
The ACR has various patient educational materials available. Check them out.
Karen Appold is a medical writer in Pennsylvania.
Reference
- Cooney JK, Law, R-J, Matschke V, Lemmey AB, Moore JP, Ahmad Y, et al. Benefits of exercise in rheumatoid arthritis. J Aging Res. 2011 Feb 13;2011:681640. doi: 10.4061/2011/681640.