The Events in Care Screening Questionnaire (ECSQ): A new tool to identify needs and concerns of people with HIV/AIDS

The purpose of this paper is to present validation data on the Events in Care Screening Questionnaire (ECSQ), which was designed to identify the needs and concerns of people living with HIV/AIDS (PLWHA) in nine specific domains: adherence to medical instructions; medical problems; specialty and inpatient hospital care; preventive health care and screening and behavioral health; sexual risk behavior; family planning; psychological symptoms; substance use; and life circumstances and demands. The ECSQ is the anchor for a more comprehensive measure called "The Dynamics of Care," and was administered in the context of a longitudinal study to evaluate New York State's HIV Special Needs Plan (HIV SNP), a Medicaid managed care model for PLWHA. Participants in the study, which began in March 2003 and closed recruitment in January 2007, were NYC PLWHA who were enrolled in either a Medicaid HIV SNP or Fee-For-Service plan. Participants were recruited through HIV SNP enrollment lists, direct on-site recruitment, and fliers. The specific event domains covered in the ECSQ were selected based on the purpose of the HIV SNP and the literature describing the needs and challenges that PLWHA face. Analyses are based on data from 628 study respondents over two times points. Results suggest that the concerns identified by PLWHA were largely consistent with their health care situation, heath status, risk behavior, and personal characteristics. Findings presented here lend support for the construct validity of the ECSQ and demonstrate its value as a starting point for inquiring more fully about the experiences of patients and improving the care they receive.