Illness-related Uncertainty Correlates With Mental Health in Patients With Systemic Autoimmune Diseases
Key findings
- This cross-sectional study examined correlations between illness-related uncertainty and sickness impact, depression, and anxiety in 136 patients with anti-neutrophil cytoplasmic antibody-associated vasculitis, IgG4-related disease or systemic sclerosis
- Illness-related uncertainty was common, and patients with greater uncertainty tended to have worse mental health outcomes, including greater depression, anxiety, and perceived impact of illness on daily functioning
- Most patients expressed a desire for access to psychosocial services, including learning strategies for managing their physical health, promoting self-care, and coping with emotional distress
- Patients expressed a strong desire for interventions that address illness-related uncertainty and many endorsed a preference for virtual support
Patients newly diagnosed with a chronic illness must cope with multiple uncertainties—how to interpret physiological changes in their bodies, manage their disease, and when and how to engage in medical visits and tests, and the possibility of symptom recurrence or progression.
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According to theoretical research, illness-related uncertainty arises and persists due to interactions between somatic symptoms (e.g., pain, fatigue, and sleep disturbance), psychological factors (e.g., interpretation of somatic symptoms, optimism about future health), and behavioral responses (e.g., excessive self-examination, urgent doctor visits, and avoidance behaviors such as substance use).
Zachary S. Wallace, MD, MSc, physician in the Rheumatology Unit of the Department of Medicine at Massachusetts General Hospital, Daniel L. Hall, PhD, staff psychologist in the Department of Psychiatry at Mass General, and colleagues studied associations between illness-related uncertainty and psychologic health in patients with systemic autoimmune rheumatic diseases (SARDs). In The Journal of Rheumatology and accompanying Editor-in-Chief interview, they report the need to tailor mental health interventions to subgroups of patients with different illness profiles.
Methods
For this cross-sectional study, the researchers recruited patients seen in the Mass General Rheumatology Unit. 136 of these patients fully completed the following surveys:
- Mishel Uncertainty in Illness Scale, adapted to SARDs
- Sickness Impact Profile, a measure of how much a disease affects daily functioning
- Patient Health Questionnaire–8, a measure of depressive symptoms
- General Anxiety Disorder–7
- Health behavior questionnaire
- Needs survey asking about the type of intervention needed, whether the need had been previously communicated to providers, and preference for a method of delivery (virtual or in-person)
The sample included 41 patients with anti-neutrophil cytoplasmic antibody (ANCA)-associated vasculitis (AAV), 61 with IgG4-related disease (IgG4-RD), and 30 with systemic sclerosis (SSc).
Uncertainty and Mental Health
The team detected statistically significant and moderately strong associations between patient-reported illness uncertainty and:
- Sickness impact: r=0.28
- Depression: r=0.43
- Anxiety: r=0.33
The results varied across illness groups:
- Association between illness uncertainty and sickness impact: Moderately large and statistically significant in AAV (r=0.57) and SSc (r=0.59) but not IgG4-RD (r=0.01)
- Illness uncertainty and depression: Moderately large and statistically significant in AAV (r=0.56) and SSc (r=0.60) but not IgG4-RD (r=0.17)
- Illness uncertainty and anxiety: Moderately large and statistically significant in AAV (r=0.45) but not SSc (r=0.25) or IgG4-RD (r=0.22)
Self-reported Needs
Patients indicated considerable interest in receiving additional support with managing physical symptoms (53%), learning strategies to increase self-care (37%), and coping with emotional concerns (24%)—most endorsed interest in receiving additional support virtually.
Many patients reported they had not communicated these needs to their clinician, and patients with greater uncertainty were more likely to have unmet needs.
Implications for the Clinic
Patients with SARDs are likely to have concerns about the ambiguity, complexity, or unpredictability of their symptoms. Clinicians can help by inquiring about these uncertainties and asking whether patients feel they lack information about available treatments. Interventions that address psychological and physical health demands are needed, and referrals to remotely delivered services may be especially well received.
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