Using rare diseases as models for biobehavioral research: allergic bronchopulmonary aspergillosis

Biobehavioral science explores links between biological, psychosocial, and behavioral factors and health. Maintaining positive health outcomes over time and across a variety of populations and settings requires understanding interactions among biological, behavioral, and social risk factors as well as other variables that influence behavior. Some barriers to biobehavioral research are related to performing biobehavioral research along the natural history of an illness, limitations in existing methodologies to assess the biological impact of behavior, the unknowns relating to impact of behavior on biology, and lack of valid and reliable biobehavioral methods to assess outcomes. A rare disease, such as allergic bronchopulmonary aspergillosis (ABPA) can be used as a model of biobehavioral research. ABPA complicates asthma and cystic fibrosis. It is a hypersensitivity reaction to Aspergillus fumigatus in most cases. ABPA can be classified into five stages: acute, remission, exacerbation, steroid-dependent asthma, and fibrotic or end stage. Because of its rarity, there can be delays in diagnosis. Treatment has used oral corticosteroids and antifungal agents in addition to management of asthma or cystic fibrosis. The National Institute of Nursing Research held an invitational 2-day working group meeting on July 15-16, 2004 with biobehavioral, biological, and immunologic science experts to examine current knowledge of biobehavioral research and to provide recommendations for additional research. The focus was on biobehavioral methods of measurement and analysis with interdisciplinary/biobehavioral approaches. This article is an outcome of this meeting.