Document 2347
 DOCN  M94A2347
 TI    'Everybody counts': an innovative HIV surveillance approach.
 DT    9412
 AU    Burkman J; McCoskey L; Koelndorfer M; Naylor D; Stover D; Kurth A;
       Indiana State Department of Health, Indianapolis.
 SO    Int Conf AIDS. 1994 Aug 7-12;10(1):325 (abstract no. PC0231). Unique
       Identifier : AIDSLINE ICA10/94370228
 AB    OBJECTIVE: HIV funding in the U.S. often is based on the number of
       reported AIDS cases, seroprevalence data, and other measures of
       identified illness occurrence. However, completeness and timeliness of
       HIV/AIDS surveillance is complicated by a number of factors, including
       concerns about confidentiality and stigma. Indiana is one of 26 state in
       the U.S. that report HIV as well as AIDS cases. A small validation study
       undertaken in 1991 found an estimated AIDS case under reporting of
       40-60% in the Indiana State Department of Health (ISDH) registry. This
       paper describes a community-based effort designed to increase knowledge
       regarding HIV reporting and to increase reporting of HIV disease in
       Indiana. METHODS: A campaign encouraging patient self-reporting was
       developed. Experts from HIV service organizations (n = 7) helped ISDH
       staff design a brochure entitled Help Make More Services Available for
       People with HIV/AIDS. [See brochure for content]. This self-reporting
       ('SR') campaign brochure was field-tested at a focus group of persons
       with HIV (n = 20). An agreed-upon legal disclaimer outlining the
       potential negative effects of HIV self-disclosure was added (in
       consultation with area activists). Beginning October 1993, 9.000
       brochures were distributed to clinicians' offices, gay bars, HIV testing
       sites, bathhouses, community HIV service organizations, clinics, social
       services agencies, mental health facilities, bookstores, churches,
       beauty salons, barber shops, laundromats, local health departments, and
       drug treatment centers. RESULTS: The SR campaign met expectations in
       terms of general consciousness-raising. Both clinicians and persons in
       the HIV community expressed increased interest in HIV/AIDS case
       reporting. Media coverage of the campaign (radio, newspaper stories)
       heightened awareness of HIV surveillance methods and rationale. The
       number of SR brochures returned was small: n = 120, representing 17 new
       cases (as of February 1994). However, the overall number of HIV/AIDS
       cases reported through usual channels was 360 (July-December 1993), an
       increase of 110% over the previous year and 30% over the numbers
       reported the four months prior to the SR campaign. DISCUSSION AND
       CONCLUSIONS: Though the SR yield was relatively low, the novel approach
       of this campaign did seem to increase awareness among health
       professionals regarding their need to report HIV/AIDS information. This
       approach may have utility in other settings, if accompanied by education
       and a philosophy of patient empowerment.
 DE    Acquired Immunodeficiency Syndrome/*EPIDEMIOLOGY/TRANSMISSION  Human
       HIV Infections/*EPIDEMIOLOGY/TRANSMISSION  HIV Seroprevalence/TRENDS
       Indiana/EPIDEMIOLOGY  Patient Participation/*STATISTICS & NUMER DATA
       *Population Surveillance  Registries/*STATISTICS & NUMER DATA  Self
       Disclosure  MEETING ABSTRACT

       SOURCE: National Library of Medicine.  NOTICE: This material may be
       protected by Copyright Law (Title 17, U.S.Code).