Uncertainty leads to depression, anxiety in patients with systemic autoimmune diseases
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.”