Investigator: Robert F. DeVellis, Ph.D.

Location: Arthritis Multidisciplinary Clinical Research Center; Department of Health Behavior & Health Education, School of Public Health; Department of Psychology, University of North Carolina at Chapel Hill, North Carolina

Timeline: September 1, 2004 – August 31, 2005

Abstract:
Individuals who are diagnosed with Wegener’s Granulomatosis (WG) and other forms of ANCA-associated systemic vasculitis (AASV) face a daunting array of psychosocial challenges. One challenge not previously studied is patients’ adherence to treatment regimens. The lack of research is troublesome, given that non-adherence to treatment regimens is common across all chronic illnesses, and could lead to ineffective treatment, serious complications, and even death in patients with these illnesses.
Complicating the study of treatment non-adherence in these patients is the lack of an existing self-report measure that can reliably, validly, and conveniently measure adherence to the self-care behaviors specifically recommended by physicians to AASV patients.

This study will characterize the behavioral demands of WG treatment regimens and the barriers individuals face in trying to follow them, develop and evaluate a self-report measure of WG treatment adherence, and describe the tendencies of patients to adhere to the different behavioral recommendations in WG treatment regimens.

Toward this end, we will survey a total of 335 adults living with WG or other forms of AASV. In Phase 1, we will interview 20 patients about the self-care behaviors required by their treatment regimens and the barriers and facilitators they experience in trying to perform them. The Phase 1 data will help inform the development of a self-report adherence measure to be piloted with clinical experts and 15 patients in Phase 2. In Phase 3, 300 patients will complete a revised draft of the adherence measure and their data will be analyzed to determine the measure’s psychometric properties.

What this means for patients
Through this research, we hope to gain insight into the challenges that patients face in trying to adhere to their treatment regimens, and facilitate future investigations by developing a convenient measure of treatment adherence specific to WG and related disorders.

Wegener’s Granulomatosis and...

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A Pilot Project towards Establishment...