How a person perceives their illness can be an important part of staying with treatment and continuing recovery of function over time. In addition, a person’s outlook on their disease may have an impact on symptoms such as fatigue.
Peter C. Grayson, MD, and others studied the differences in illness perception to identify risk for factors for negative perceptions and to look for a possible link with fatigue. The research was published in the November 2013 edition of Arthritis Care & Research.
Patient’s Perception of Symptoms
“We conducted this study as part of our initial efforts to study vasculitis from the patient’s perspective,” said Dr. Grayson, from The Vasculitis Center at the Boston University School of Medicine. “We realize that patients think about their illness and prioritize aspects of treatment differently than physicians. We want to understand the disease better from the patient’s view to make sure we are addressing the needs that are most important to them.”
Six hundred and ninety two patients with 9 types of vasculitis were recruited from an online vasculitis registry. Each completed the revised Illness Perception Questionnaire (IPQ-R) that measures a person’s perception of vasculitis across five different areas. Fatigue was measured using the Multidimensional Fatigue Inventory (MFI).
“The importance to the patient is that this kind of work helps physicians prioritize research needs based on patient input,” noted Dr. Grayson. “It also helps us identify risk factors that predict which patients will experience the greatest psychological burdens of illness and intervene earlier when needed. Finally, it can help us design clinical trials that better test whether medications improve those aspects of vasculitis that are most important to the patient.”
Younger Age Contributes to Negative Outlook
Age was a major contributor to negative perceptions of disease showing that for every year of younger age, the negative outlook on their illness increased by 4%. Depression, active disease status, and poor overall health were also associated with negative illness perceptions. The results from analysis of the MFI showed that what was measured by that test is associated with fatigue in vasculitis and explained differences beyond disease activity and other characteristics.
Participant-held beliefs about vasculitis were similar across the nine different forms of the disease studied. The exceptions were stronger beliefs about the cyclic nature of the and greater number of symptoms attributed to the illness among those with Behçet’s disease. Given this similarity, Dr. Grayson thinks that different types of vasculitis can be combined when looking at perception and fatigue.
“In this study we learned that patients with vasculitis experience significant psychological burdens of illness and that these experiences are similar across many different forms of vasculitis,” said Dr. Grayson. “We also learned that fatigue is common amongst most patients with vasculitis, and that young patients with vasculitis are at particular risk to experience greater psychological burdens of illness.”
Grayson PC, et al. Illness perceptions and fatigue in systemic vasculitis.
Arthritis Care Res (Hoboken). 2013 Nov;65(11):1835-43.
By Kurt Ullman, RN