Abstract
Objective Patients with systemic autoimmune rheumatic diseases (SARDs) face illness-related uncertainty, but little is known about the psychological profiles and psychosocial and health needs associated with uncertainty among adults with SARDs.
Methods Patients from the Massachusetts General Hospital with antineutrophil cytoplasmic antibody-associated vasculitis (AAV), IgG4-related disease (IgG4-RD), and systemic sclerosis (SSc) completed the Mishel Uncertainty in Illness Scale, 8-item Patient Health Questionnaire depression scale, 7-item General Anxiety Disorder scale, Sickness Impact Profile, and a survey of psychosocial needs. The associations of uncertainty and self-reported needs with depression, anxiety, and sickness impact were assessed.
Results One hundred thirty-two patients with AAV (n = 41, 31%), IgG4-RD (n = 61, 46%), or SSc (n = 30, 23%) participated. The mean age was 64 years, 52% were female, and 83% were White. Greater illness-related uncertainty was positively correlated with higher levels of depression (r = 0.43, P < 0.001), anxiety (r = 0.33, P < 0.001), and sickness impact r = 0.28, P = 0.001). We observed variations in these measures across SARDs, such that uncertainty was more strongly associated with depression and sickness impact in AAV or SSc compared to IgG4-RD. The primary needs that patients endorsed were services for managing physical symptoms (53%), self-care (37%), and emotional concerns (24%), with greater needs strongly associated with greater illness-related uncertainty.
Conclusion Among patients with SARDs, illness-related uncertainty is correlated with levels of depression, anxiety, and sickness impact, as well as psychosocial needs. Findings also implicate the need for targeted interventions to address uncertainty and needs among subgroups of patients with different illness profiles.
