Multi-city study of quality of care for HIV-related Pneumocystis carinii pneumonia: successfully collecting highly sensitive information

Abstract

Pneumocystis carinii pneumonia (PCP) has been the major cause of death and the most common opportunistic infection in patients with acquired immunodeficiency syndrome (AIDS), with in-hospital mortality rates as high as 60% in some hospitals. To investigate whether there were large variations in quality of care for hospitalized patients with PCP, researchers at RAND Corporation, in 1989, designed and initiated a multi-city study of patterns of care. Mounting a successful primary data collection effort in several cities requires a substantial effort from collaborators in many different settings. In addition, studies of persons with AIDS require careful consideration of issues related to the highly sensitive nature of data sources such as medical records of persons with AIDS, collection of reliable and accurate information, and protection of hospital and patient confidentiality and anonymity. The research team developed an interactive well-coordinated program to select hospitals and patients for evaluation, ensure confidentiality and anonymity, prepare materials, recruit collaborators, and obtain detailed clinical data about the care of patients with PCP. This paper summarizes major data collection and related project activities including design and sampling decisions, fieldwork preparation and implementation, and patient and hospital characteristics.