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HIV Epidemiology Program
Supplement to HIV/AIDS Surveillance (SHAS) Project Survey
General surveillance information of the Human Immunodeficiency Virus and Acquired Immunodeficiency Syndrome (HIV/AIDS) is provided by the HIV/AIDS Reporting System (HARS) which is the main reporting mechanism. Since HARS collects only basic epidemiological information, it has been unable to provide the "leading-edge" information required by public health programs. In Arizona and other selected sites SHAS was implemented in 1991 to be a more powerful extension of the existing surveillance. The goal of SHAS is to obtain additional descriptive information on persons with newly reported cases of HIV infection or AIDS. As such, SHAS supplements other information that is routinely collected through national HIV and AIDS surveillance. The information gained from this project improves our understanding of sexual and drug-using behaviors, health care access, minority issues, utilization and adherence to therapies, geographic differences, and disability as related to HIV infection.
The SHAS questionnaire received a major revision in 2000 and was awarded IRB approval in July 2000, and again in July 2001. Collection of SHAS data ended on June 30th, 2004. CDC will publish a final national report in 2005.
- SIGNIFICANCE OF PROPOSED PROJECT
Results from the project are used at the state and local level to target interventions designed to prevent HIV transmission and to improve services for persons with HIV disease. Nationally these data are used to enhance HIV/AIDS surveillance information which is used for planning and resource allocation at the federal level.
- SPECIFIC OBJECTIVES OF SHAS PROJECT
- To gather socioeconomic data on those subjects who are newly infected with HIV.
- To determine rates of drug abuse and specific IDU-needle sharing behaviors.
- To determine risk as a function of sexual behavior including condom use, multiple partners and history of other STDs.
- To gather data on subject's general health and utilization of services.
- For women, to gather data on reproductive/gynecological history and child health.
- To determine use and compliance with medical therapy.
- Components of the Design
Recruitment is restricted to persons who are at least 18 years of age and reported to local health departments as having HIV or AIDS. Intergovernmental agreements with Maricopa and Pima County Health Departments require that all persons who are reported to the local health department "shall be offered SHAS." If the patient or the patient's physician refuses contact, no further efforts to interview for SHAS are made. Patients whose medical and/or psychiatric status are unstable are excluded. Family or friends of deceased patients are not contacted. County Health Department Communicable Disease Investigators (CDIs) will be following this protocol when conducting the SHAS interview.
Currently, local health department CDIs are required to contact all reported cases of HIV or AIDS, to provide education regarding HIV transmission, familiarize the client with services that are available, and offer partner notification. At the time of initial contact, SHAS is offered to the client at Maricopa and Pima County Health Departments. CDIs who administer SHAS are required to have been trained in the use of the questionnaire booklet specifically as well as general interviewing techniques. The current instrument (Version 6) contains 66 pages of questions with skip patterns. The estimated time for completion of the SHAS interview is 45 to 60 minutes. Informed Consent is obtained according to the Federal Assurance of Confidentiality requirements and as required by local review boards in participating SHAS sites. The interview is terminated at anytime when the subject requests.
- Data handling and analysis
Questionnaires are stored in locked filing cabinets in a locked office. SHAS data is stored on the ADHS LAN with only four epidemiologists having access to the data through HARS software, and only one epidemiologist typically accessing SHAS data. The SHAS database itself contains no named records, however, it is linked to names in the HARS registry through a unique state number. Local SHAS data are provided to local health departments, Ryan White CARE Act Consortia, and HIV Prevention Community Planning Groups as requested. These data are provided without identifying information (ie, aggregate data).
All SHAS questionnaires are entered into the system without any specific identifiers such as the subject's name, address or social security number. The questionnaires are identified by a state number only. SHAS data is subject to the same security and confidentiality requirements utilized for HARS.
All valid SHAS questionnaires are stored and locked in filing cabinets behind locked office doors. Only invalid SHAS (completed on a case from another state) have been destroyed.
- Components of the Design
- HUMAN SUBJECT'S RISKS AND BENEFITS
Given that most subjects have already developed a relationship with the interviewer (a public health professional) and have received counseling due to being reported with a communicable disease, any risk to the client would be minimal, though some questions in SHAS are of a highly personal nature and may make the subject feel uncomfortable. The subject need not answer such questions and may discontinue the interview at anytime. Benefits to the subject are both direct and indirect. For example the Medical and Social Services Module allows the CDI to educate and guide the subject to providers of services according to the subject's specific needs. Education in methods to reduce spread of HIV is routinely provided. The indirect benefits to the subject are due to the broad scheme of SHAS allowing state and federal agencies to determine where funding needs to be directed and which behaviors are most associated with HIV transmission in different locations.
Hard copies of SHAS questionnaires are kept in locked filing cabinets in locked offices. Access to SHAS data is restricted to only the epidemiologists who have access to HARS data.
- Informed Consent
Before beginning the questionnaire the interviewer reads a consent statement found at the beginning of the booklet detailing what to expect during the questioning, issues of confidentiality, and the voluntary nature of SHAS. The subject is asked to make a mark (eg. "X") to indicate that he or she understands the consent statement. The interviewer is then required to sign the consent statement as verification of the subject's "mark."
SHAS was conducted beginning in 1991 and ended in June of 2004.