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.
