What Patients with Lupus Want You to Know

During a series of interviews with patients who have systemic lupus erythematosus, issues related to medication side effects, supplement use, depression and support groups arose, as well as concerns about race and activities of daily living. The interviews gave me a better understanding of what patients with lupus wish their physicians knew. I am grateful to the patients who shared their experiences with me, and in this article, I share what I learned in the hope that other physicians find the information helpful in providing care for patients with lupus.

Medication Side Effects

Surprisingly, many patients I talked to during my interviews could not name a side effect of their medication(s). This made me question whether enough is being done to educate patients. Patients are asked questions to evaluate for possible side effects during their visits, but are they informed about what side effects to look out for?

One patient said, “Many people don’t read the handouts. I would prefer hearing from my physician about what side effects I could develop from my medications.”

With this in mind, emphasis should be placed on educating patients during visits instead of solely handing them printouts, expecting them to read the material and educate themselves. Indeed, the percentage of patients reading these printouts and how much they understand are unknown. Therefore, it may be helpful for physicians to inform their patients about common side effects and provide them with printouts. Providing both will enhance patient education. Oral explanations during the visit allow patients to ask questions and discuss risks with their physicians, and printouts give patients a resource to refer to afterward.

Supplements

Physicians often review with patients the medications they prescribe. However, when patients feel medications have fallen short or have too many side effects, they start to look elsewhere for relief. Some patients order supplements that are advertised online. They presume these supplements are safe because they don’t require a prescription. Physicians must know what kinds of supplements are advertised to patients and be able to advise them about their effects and safety.

One patient said, “There are a few supplements that I have found on my own online that I have been taking.”

Peer-reviewed data documenting the use of supplements among rheumatology patients are limited. One survey questionnaire found that 30.6% of rheumatology and internal medicine patients reported using a supplement within the past two years.¹ As the use of supplements continues to grow, it is becoming increasingly important for physicians to initiate conversations with their patients on supplements and their safety.

Mental Health: Depression

Patients with lupus live with a chronic disease that affects them not only physically, but mentally. The prevalence of anxiety and depression in adult patients with lupus is high. According to one meta-analysis, the pooled prevalence was 40% using the Hospital Anxiety and Depression Scale, with a cutoff of 8 or more.²

One patient said, “My physician has never asked about anxiety or depression. I am too nervous to bring it up. I would appreciate it if my physician would initiate the conversation and ask me.”

Physicians should screen patients for symptoms of anxiety or depression. It is not always obvious when our patients are anxious and depressed. We must ask the right questions and listen to our patients.

Mental Health: Support Groups

With depression prevalent among patients with lupus, it is critical to assess if they have a support system. If they have limited family or social support, then it is important to look for other options, such as lupus support groups.

A patient said, “I participate in lupus walks. I love them because I meet other people that have the same disease. I also feel loved and supported by my family when they participate with me. There are also support groups online. These were very helpful, especially in the early stages.”

Access to support groups has changed over the years, with the increased use of social media and video conferencing. Patients have more access than ever before to connect with others.

Unfortunately, peer-reviewed data about the benefits of support groups for patients with lupus are limited. However, the benefits of support groups have been studied in other patient populations, namely those with cancer. One study examined the benefits of online support groups for women with breast cancer and found it decreased patients’ scores on depression and perceived stress.³ This is encouraging, and the use of online support groups can increase access for patients with lupus.

Racial Concerns

Although ethnic differences in disease expression of lupus is a relatively new area of interest in research, this is something patients have already been aware of.

One patient said, “With me being African American, my skin looks different. Where a skin condition may look purple on a Caucasian person, it will not look purple on me.”

Patients expressed concerns about visiting multiple physicians before they received a diagnosis. This is particularly concerning because lupus more frequently affects patients who are Black, and they are more likely to experience poor outcomes than patients who are white.⁴ Undoubtedly, more work must be done to overcome racial disparities in medicine and close the gap in care.

Daily Lives

Physicians must remember that lupus has changed nearly every aspect of their patients’ lives. Daily activities people take for granted, including bathing, washing their hair or going to work, are a struggle for some patients with lupus.

Following is how one patient described her daily struggles: “My elbows, wrists and joints are hurting. I had to retire early because I could no longer do my job. My skin hurts when I’m touched, so intimacy is affected. I have to take sponge baths because it hurts to take a shower. I had to change my wardrobe to things I can easily get in and out of. I wear mainly jogging suits and onesies. Washing my hair is a chore, and I get so exhausted.”

Patient visits average around only 20 minutes, but it is important not to neglect our patient-physician relationships. Patients require not only medical care, but also connection and empathy. They need to know that their physician is in this battle against lupus with them and that they are not alone.

In Sum

Patients want their physicians to explain the potential side effects of their medications, have knowledge about supplements, inquire about their mental health, encourage support groups and acknowledge their daily struggles.

Jacqueline Jansz, MD, is a resident at the University of Illinois, Chicago.

Nadera Sweiss, MD, is a professor of medicine, chief of the Division of Rheumatology and medical director of the Arthritis Clinic at the University of Illinois. She is the founder and director of the Bernie Mac Sarcoidosis Translational Advanced Research Center (STAR).

References

1. Mikuls TR, O’dell JR, Moore GF, et al. Dietary supplement use by rheumatology and internal medicine clinic patients results of a survey questionnaire. J Clin Rheumatol. 1999 Oct;5(5):255–258.
2. Zhang L, Fu T, Yin R, et al. Prevalence of depression and anxiety in systemic lupus erythematosus: A systematic review and meta-analysis. BMC Psychiatry. 2017 Feb;17(1):70.
3. Winzelberg AJ, Classen C, Alpers GW, et al. Evaluation of an internet support group for women with primary breast cancer. Cancer. 2003 Mar;97(5):1164–1173.
4. Contreras G, Lenz O, Pardo V, et al. Outcomes in African Americans and Hispanics with lupus nephritis. Kidney Int. 2006 May;69(10):1846–1851.