Results of the ACSUS for pediatric AIDS patients: utilization of services, functional status, and social severity.

OBJECTIVE

This study describes demographic characteristics of pediatric AIDS patients, describes hospital and community-based service utilization patterns, and analyzes medical and social support service usage patterns with respect to patient demographic characteristics, clinical trial participation, functional/developmental status, and social environment.

DATA SOURCES AND STUDY SETTING

Data reported in this study are from the AIDS Costs and Service Utilization Survey (ACSUS) and cover the six-month period beginning March 1991 (N = 135). Pediatric patients who sought care for HIV-related problems were sampled at seven different hospitals in five metropolitan regions of the United States. All of the participating hospitals had clinics specifically serving pediatric patients infected with HIV. The sample consists of HIV-positive patients who had had at least one HIV-related symptom or condition.

STUDY DESIGN

A stratified probability sample design guided the sampling strategy, which included oversampling in two large hospitals from two of the five metropolitan areas. Survey data cover an 18-month time period of health care utilization, cost, and financing information from HIV-infected patients and their providers. Utilization measures are standardized to a six-month period. Per capita income, family structure, informal personal network, functional status, and clinical trial participation are tested for associations with patterns of utilization. In addition, a weighted ten-point social severity scale was developed to assess family/household stability.

DATA COLLECTION

Data were collected through a screener instrument completed by the person accompanying the child to a hospital clinic visit (usually a a parent), and through two interviews conducted in person with the patients' primary caregivers. Data from the questionnaires were coded and assembled into computerized SAS analysis files by WESTAT:

PRINCIPAL FINDINGS

Children in this sample are 62 percent African American, 25 percent Hispanic, and 10 percent White. Medicaid is the primary payer for 92 percent. Mean per capita income is $3,440. Fewer than one-half (41 percent) of the families of the children receive Aid to Families with Dependent Children (AFDC). (AFDC). Within the six-month period, approximately one-third of the sample (29.6 percent) was hospitalized. Mean length of stay was 16.0 days. Clinical trial participation was positively related to mean number of hospital clinic visits and receipt of formal (paid) home care. There were no differences in use of community clinic, mental health, and inpatient facilities by clinical trial status. Participation in clinical trials was positively related to income and negatively related to social severity. In four cities, emergency room use was consistently lower for clinical trial participants than for nonparticipants.

CONCLUSIONS

Data from the first six months of the ACSUS pediatric sample suggest that participation in clinical trials may bring about access to social services that appear to reduce emergency room use. However, the findings reported here are descriptive and exploratory. Further multivariate, nonparametric analyses of the full 18-month provider-patient merged data set are necessary to confirm the simple correlations found in this study.