As the treatment of vasculitis has improved, people with the disease are living longer. Increased survival has prompted researchers to look beyond acute manifestations of disease to functional limitations and the subtle differences in disease states that impact daily living. A recent study focused on patient-reported outcomes to help physicians better understand and address issues related to the disease that impact patients’ quality of life.
Peter Merkel, MD, MPH, professor of medicine and director of the Vasculitis Center at Boston University in Boston, Mass., recently directed and published a study that assessed patients’ self-evaluation of the burden of vasculitis and compared those data across patient populations in Germany, the United Kingdom, and the United States. The study was conducted by the Vasculitis Clinical Research Consortium (VCRC) in collaboration with the Vasculitis Foundation. The lead investigator was Karen Herlyn, MD, MPH, University Hospital Schleswig-Holstein in Lübeck, Germany; Bernhard Hellmich, MD, Kreiskliniken Esslingen and University of Tübingen, Plochingen, Germany; and Philip Seo, MD, Johns Hopkins University School of Medicine, Boston, also contributed to the work, as did hundreds of patients with vasculitis who attended any one of several Vasculitis Foundation meetings.
The team was motivated to undertake the study because “patients’ perspectives about their vasculitis have not been well-characterized and are not well-measured with our current methods of diseases assessment,” Merkel explains.
It’s important to have the patients’ perspective since they are the ones with the disease. “What we seek to do in medicine is treat the patient, and the more we can understand the effect of the disease or the treatments on the patients, the better we can work to make them as healthy and happy as possible,” he notes.
The study revealed that patients and physicians rank symptoms differently. Across the board, patients are most concerned about:
• Fatigue and loss of energy
• Weight gain
• Joint pain
One surprising finding was how consistent the patient responses were. Patients from different nationalities rated their disease burdens similarly. No significant differences between the vasculitis types were recorded except the nasal and sinus symptoms, which were noted almost exclusively by patients with granulomatosis with polyangitis (Wegener’s). However, American patients did rank the financial burden higher than their European counterparts, 19 percent versus 6 percent.
Ninety-five percent of all patients experienced both fatigue and energy loss, and rated the symptoms as severe. Severe organ manifestations, such as seizure and oxygen dependency, were ranked lower by most patients.
Interestingly, another recent study by the VCRC and the European Vasculitis Study Group found that clinicians also ranked burdens similarly to each other, but very differently than their patients. The Assessment of Damage in Vasculitis: Expert Ranking of Items of Damage, published in Rheumatology, found that physicians ranked organ-related issues highest among the implications of the disease, opposite of what patients with vasculitis indicated were of highest concern.
“Physicians are focused on more easily measurable aspects of disease and especially major organ damage,” Merkel says. “Thus, physicians may pay less attention to other aspects of disease that are still quite important. The data is helpful in making physicians and nurses more aware of the many aspects of health and disease that patients with vasculitis experience.” Ongoing work by researchers aims to develop methods to better measure patient-reported outcomes in vasculitis.