Objective: To assess quality of life (QOL) and psychological adjustment in primary systemic vasculitis (PSV), and to assess their relationship to disease-related measures.
Methods: Fifty-one PSV patients completed questionnaires assessing QOL (Short Form 36 [SF-36]), disability (Health Assessment Questionnaire [HAQ]), and mood (Hospital Anxiety and Depression Scale [HADS]). Illness-related measures, disease activity, and permanent damage scores (the Birmingham Vasculitis Damage Index [BVDI] modified, and the Birmingham Vasculitis Activity Scale modified) were collected. Aspects of the HAQ's psychometric properties were evaluated.
Results: PSV patients' SF-36 scores, except for mental health, were significantly lower than the norms, indicating poorer QOL. Using the HADS, 43.2% of patients reported increased anxiety symptoms and 25.5% increased depressive symptoms. Patients with increased pain when compared with those with little or no pain had significantly impaired scores in all SF-36 subscales, except for mental health; and they scored significantly worse on depression, fatigue, problems with sleep, and symptom severity. Patients with neuropathic symptoms and those taking high levels of steroids had significantly impaired scores on some of the relevant measures. There were no significant correlations between the modified BVDI scores with the SF-36 subscales or with the other self-report disease-related measures. The HAQ showed high internal consistency and high concurrent and discriminant validity.
Conclusion: Many aspects of QOL are significantly impaired in PSV. Self-reported pain and disease symptoms, SF-36 scores, and depression and anxiety levels are significant indicators of the adverse impact of vasculitis on patients' lives that need to be assessed and managed.