Section 2: Special Questions and Considerations for Ryan White CARE Act Grantees

This section contains two questions that pertain to HRSA HIV/AIDS care planning groups. You should answer these questions in addition to the core epidemiologic questions in Section 1.

Question 1: What are the patterns of service utilization of HIV-infected persons in your area?

In this section of your profile, describe the patterns of service utilization of the HI-infected persons in your area (see Tables 3-20, 3-21, and 3-22 and Figures 3-12 and 3-13).

Many types of data are available to help you answer this question. Some, such as the CARE Act Data report (CADR), are available everywhere; others are available only in some areas. Recommended analyses using CADR data are described here. Other potential data sources, along with suggested analyses, are described after the illustrative tables and figures for CADR data analyses.

Recommended analyses

• HIV primary medical care, by sex, race/ethnicity, age group, exposure categories, TB status, and viral hepatitis (B and C) status
• Support services, by sex, race/ethnicity, and age group

  Notes:

  • HIV primary medical care includes the following:
    • medical evaluation and clinical care consistent with US Public Health Service guidelines, including the monitoring of CD4 cell counts; viral load testing; antiretroviral therapy; prophylaxis and treatment of opportunistic infections, malignancies, and other related conditions
    • oral health care
    • outpatient mental health care
    • outpatient substance abuse treatment
    • nutritional services
    • specialty medical care referrals
  • Duplicates in CADR data are removed at the provider level. Furthermore, because all the data elements are required elements of the CADR, an agency with a client level system will be able to compute these analyses for its clients. If a grantee does not have a way to remove the duplicates from the provider records, these data will be duplicated at the EMA or state level. Use caution when working with these data.

Figure 3-12: Average number of visits per client, by type of Title I service, 1998–2000

Note. Data based on valid reports only. Valid data defined as providers’ reports of complete data both for the number of clients and the number of visits.

Interpretation: This figure shows a comparison of the average number of visits per client by type of service from 1998 through 2000. The average number of visits per client remained relatively constant for all service categories for the 3-year period, although the average number of visits per client for substance abuse treatment declined slightly and the average visits per client for medical care and dental care increased slightly.

Figure 3-13: Average number of visits per client, by type of Title II service, 1998–2000

Note. Data based on valid reports only. Valid data defined as providers’ reports of complete data both for the number of clients and the number of visits.

Interpretation: This figure shows that the average number of visits per client consistently decreased from 1998 through 2000 for all services except dental care and mental health. Medical care and case-management services experienced a modest decline in average number of visits per client from 1998 through 2000. The largest decline was in substance abuse counseling and treatment services: the average number of visits per client was 25.2 in 1998 and 16.2 in 2000.

• Demographics of HIV-infected clients receiving services from agencies not funded by the Ryan White CARE Act, including substance abuse, mental health, outreach, and homeless programs as well as community health centers, county clinics, and jails. Examine sex, race/ethnicity, age group, TB status, and exposure categories of these populations. These data may be available at the local level.
• Data from Medicaid and State Children’s Health Insurance Program. Examine primary care services and antiretroviral treatment among HIV-infected persons enrolled by sex, age group, and race/ethnicity.
• AIDS Drug Assistance Program. These data may be influenced by Medicaid and other insurance coverage but may provide information on the extent of coverage by this program. Suggested analyses include enrolled persons by sex, age, and race/ethnicity.
• Statewide hospital discharge data. Analyze HIV-related hospital discharges (with any diagnosis of HIV) by year, age group, sex, and, if reliable, by race/ethnicity. Multiply by length of stay to similarly analyze days of hospitalization. Hospital days are a better measure of burden on the health care system than are discharges.
• Survey of HIV Disease and Care and Adult/Adolescent Spectrum of Disease (see Figure 3-14). These studies focus on HIV-positive persons enrolled in primary health care. Analyses include description of the following variables: antiretroviral treatments, AIDS opportunistic infections―morbidity, mortality, prophylaxis, monitoring of CD4 counts and viral load, immunization coverage, TB screening, and hospitalization. Suggested analyses include examining these variables by sex, age, and race/ethnicity.

Figure 3-14 Proportion of patients who received antiretroviral treatment late, at the recommended time, or early, Adult Spectrum of Disease Study—State X, 1996–2000

Note. Late (CD4 count of <200 cells/μL or AIDS-defining opportunistic infection), generally recommended time (CD4 count of ≥ 200, but <350 cells/μL), or early (CD4 count of ≥ 350 cells/μL).

Interpretation: This figure illustrates the timing of the initiation of antiretroviral treatment and the proportions of patients whose treatments began at each of 3 times (each time corresponds to a category of CD4 cell count). Of patients receiving care, the proportion whose antiretroviral treatment was begun late increased from 37% in 1997 to 46% in 2000.

Note: The Survey of HIV Disease and Care provides data on inpatient, outpatient, and emergency room visits specific to HIV as well as other variables for standard of care. Using these data, you can compare standards of care among Ryan White CARE Act–supported providers vs. providers not supported by the CARE Act, urban providers vs. non-urban providers, and other variables.

• Supplement to HIV/AIDS Surveillance. For areas collecting population-based data, this study can describe all HIV-infected persons, including those who may not be in care. You should conduct analyses to identify the proportion of persons receiving care in your service area. For persons who are in care, your analysis may include a description of antiretroviral treatments, prophylaxis for opportunistic infections, CD4 and viral load testing, and data on hospitalizations. Analyses of home health care, mental health services, case management, and service needs may be useful. The analyses of data on persons enrolled in care can also be performed by areas with facility-based data collection. Suggested analyses include examination of these variables by sex, age, and race/ethnicity.
• Client-level data reporting systems. In areas with client-level data systems, such as HRSA’s CAREWare, unique client identifiers permit the removal of duplicated counts of service utilization. Track and analyze data carefully to protect client confidentiality and avoid duplicate counts. Select data from providers of outpatient medical care, substance abuse treatment, mental health treatment, and case management. For data from these providers, examine the patterns of HIV service utilization by sex, race/ethnicity, and age group.

Client data allow specialized analyses, including the following:

• Comparison of number and percentage of persons whose first HIV diagnosis was also an AIDS diagnosis and persons whose diagnosis was made in earlier stages of HIV infection (before progression to AIDS). This comparison shows which population groups do not have access to, or are not using, counseling and testing services early in the course of infection.
• Comparisons of persons with AIDS (and HIV where data are available) in a service area and persons receiving services through CARE Act providers may reveal which population groups are underserved. Shortfalls in services for particular populations are likely to differ by type of service.

Go to Chapter 3, Section 2, Question 2