Back to Annual Meeting Page		American Public Health Association 133rd Annual Meeting & Exposition December 10-14, 2005 Philadelphia, PA

Abstract #114768

Barbara J. Sjostrom, MPA, Health Systems Research, University of Illinois College of Medicine-Rockford, 1601 Parkview Avenue, Rockford, IL 61107, 815-395-5639, barbsjos@uic.edu and Joel B. Cowen, MA, Health Systems Research, Universtiy of Illinois College of Medicine at Rockford, 1601 Parkview Avenue, Rockford, IL 61107.

Citizens in five small rural northwestern Illinois communities expressed concerns about high prevalence of multiple sclerosis. Environmental hazards were suspected as a cause. Health departments, MS advocacy groups, and MS patients or family members urged the University of Illinois College of Medicine at Rockford to investigate. Funding was received from the Agency For Toxic Substances and Disease Registry (ATSDR) in collaboration with four other states using various strategies.

Using a community-centered case-finding approach, eligible individuals with MS were identified in the five communities. A key component was to recruit a local advocate to recruit participants. Widespread media publicity announced town meetings. Postings on the internet and through advocacy organizations reached people who had lived in the areas, but moved.

Participants completed a questionnaire on their medical, family, and employment history and gave informed consent to have their diagnosis verified according to standardized criteria, essential to establishing the prevalence rate. However, reviewing records individually at physicians' offices in a three-state area was a labor intensive effort.

Results indicated higher than national prevalence rates of MS in three communities. However, no associations could be made to local environmental hazards due to the inability to measure exposure and the long latency period for MS. These results were disappointing to the communities and media who expected more definite connections to the environmental hazards, demonstrating a weakness of “disease cluster” studies. This case-finding approach had widespread community support and appeared to identify almost all potential MS cases living in the communities within the eligibility period.

Learning Objectives: Participants will be able to

• Discuss methods to determine the prevalence of multiple sclerosis in small communities.
• Identify barriers to conducting such a study.
• Evaluate the study findings relative to the knowledge of the epidemiology of MS.
• Identify the pros and cons of a community-oriented approach.

Keywords: Surveillance, Chronic Diseases

Presenting author's disclosure statement:

I wish to disclose that I have NO financial interests or other relationship with the manufactures of commercial products, suppliers of commercial services or commercial supporters.