Objective To review the literature on the psychological needs of people with rare rheumatic diseases.
There is an extensive research literature on the psychological impact of rheumatic disease, the role of psychological factors in aetiology and outcome and psychological intervention. However the majority of psychological research on specific rheumatic diseases has focused on common conditions such as RA, OA, and AS.
Review of the literature on the psychological needs of adults with rare rheumatic diseases reveals few high quality studies. Experiencing a “rare” rheumatic disease may present the person with particular psychological challenges e.g. diagnostic uncertainty, treatment side-effects and lack of peer support. There is evidence that many rare rheumatic diseases can have specific psychological consequences including Neuropsychological, emotional, body image and psychosexual difficulties. There is some evidence that psychological factors may be related to outcome in some rare rheumatic diseases. These issues will be illustrated with examples of studies with vasculitis, scleroderma, Sjorgren syndrome, Lyme’s disease and Behcet’s disease.
In conclusion many people with rare rheumatic diseases have specific and significant psychological needs. Research is needed to enhance our understanding of the contribution of psychological factors to the development and course of rare rheumatic diseases and on psychological interventions to address these issues.