Uncertainty leads to depression, anxiety in patients with systemic autoimmune diseases
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Patients with systemic autoimmune rheumatic disorders who show evidence of illness-related uncertainty also tend to experience depression, anxiety and increased sickness impact, according to data published in the Journal of Rheumatology.
“From my clinical experience, I have observed that our medications for rheumatic disease often work very well to address some of the disease’s manifestations — joint pain, renal failure, inflammatory eye disease, for instance — but patients often continue to struggle with their diagnosis and what it means for their day-to-day life and functioning,” Zachary S. Wallace, MD, MSc, of Massachusetts General Hospital, told Healio. “We don’t have a great understanding of illness-related uncertainty in these conditions, its associations with mental health, and what patients need from us besides pharmacologic treatments.”
To examine the connection between illness uncertainty and certain mental health conditions, Wallace and colleagues first identified patients with ANCA-associated vasculitis (AAV), lgG4-related disease (IgG4-RD) and systemic sclerosis at Massachusetts General Hospital. These conditions were selected because they “prototypic” systemic autoimmune rheumatic disorders that feature distinguishing factors which may play into patient uncertainties, the researchers wrote.
Wallace and colleagues identified patients with AAV who visited the hospital’s rheumatology unit between Jan. 1, 2020, and Nov. 11, 2020, using electronic health records, while those with IgG4-RD and SSc were identified using prospective registries. Patients who were eligible for inclusion completed several surveys covering demographics, comorbidities, self-reported disease activity, the Michel Uncertainty in Illness Scale (MUIS), the Sickness Impact Profile, the Patient Health Questionnaire-8, the General Anxiety Disorder-7, the Health Behavior Questionnaire and the Needs Survey.
Patients were able to skip specific questions and submit responses anonymously, the researchers wrote.
In total, 369 patients were invited to participate, and 132 patients completed the survey in its entirety. There were 41 patients with AAV (31%), 61 with IgG4-RD (46%) and 30 with SSc (23%). Age and race distribution were similar throughout all disease groups, but there was a significant difference in female patients by group. Female patients made up 56.1% of the AAV group, 27.9% of the IgG4-RD group and 96.7% of the SSc group (P < .001). Uncertainty reports were similar across all disease groups, but the patients in the AAV or SSc groups tended to trend higher in uncertainty scores, the researchers wrote.
The median MUIS scores were 55 for patients with AAV, 59 for SSc and 53 for patients with IgG4-RD (P = .002). According to the researchers, self-reported depression was common, with 36% of patients reporting “at least” mild depression. Similar symptoms were reported across all disease groups, but trended more often toward patients with AAV and SSc reporting depression symptoms more often than patients with IgG4-RD. Across all disease states, 41.8% reported at least mildly severe anxiety symptoms, with breakdowns similar to those seen in patient-reported depression symptoms.
Patients with AAV reported anxiety symptoms 51.2% of the time, while patients with SSc reported them 26.7% of the time and patients with IgG4-RD reported them 21.3% of the time, the authors wrote (P = .005).
The researchers found “moderately strong associations” between patient-reported uncertainty and depression (P < .001), anxiety (P < .001) and sickness impact (P = .001). Additionally, patients reported interest in receiving more psychological support and receiving resources for daily tasks, the researchers wrote.
“A spectrum of illness-related uncertainty is observed in patients with rheumatic disease and this is associated with depression, anxiety, and sickness impact,” Wallace said. “Patients with rheumatic diseases have a number of unmet needs related to their mental health and well-being.
“It is important to engage patients on these important topics and identify resources that may be available to help them as they continue on their journey with rheumatic disease,” he added. “We are excited about the next steps with this research and are hoping to develop novel interventions that might be applicable across rheumatic diseases.”
Perspective
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Studies have shown that depression and anxiety may be associated with poorer treatment outcome in patients with rheumatic diseases. Patients with debilitating conditions can perceive high levels of illness-related uncertainty, which may lead to higher levels of depression and anxiety.
This cross-sectional study by Wallace, et al. found that patients with systemic autoimmune rheumatic diseases (SARDs) report illness-related uncertainty, and that there were strong associations of illness-related uncertainty with self-reported depression and anxiety.
Not surprisingly, higher levels of uncertainty, depression and anxiety were associated with the desire for interventions to improve their psychologic and physical health. The top three interventions most desired by patients in this study were strategies for better managing physical symptoms, improving self-care and coping with emotional concerns.
Although patients express the desire to have support to improve their psychologic well-being, these desires were not frequently communicated with their providers. I believe this may be due to the lack of time during the visits with physicians, as well as patients’ hesitance to raise these issues due to physicians prioritizing the physical aspect of the disease.
These study findings can help raise awareness among physicians to not overlook the emotional impact of patients’ diseases. Incorporating tools to assess depression/anxiety as part of these patients’ routine care may greatly help physicians like me to identify their needs for interventions and ultimately lead to better disease outcome.
Understanding the strong connection between illness-related uncertainty with depression and anxiety will also encourage physicians to put in more effort to educate their patients regarding their conditions, treatment options and prognosis throughout the course of their care. Given women report more illness-related uncertainty and therefore have a higher risk for depression and anxiety, it is important that physicians are more mindful of women's disease educational needs.
Since the patient population in this study was predominantly white and well educated, with higher socioeconomic status, patients with fewer resources, different ethnicities and language barriers may be more impacted by their illness-related uncertainty, exacerbated by their lack of access to important support services. Further studies are needed to better understand these groups and more outreach effort may be needed for these groups. For all patients, letting them know that their concerns are valid so that they feel more comfortable raising their questions can lead to better disease outcome.
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