Overview of Course and Welcome Remarks

The purpose of this institute is to present the mechanisms needed to design and implement a successful longitudinal health survey research study that uniquely combines health-related quality of life (HRQL) data with ongoing clinical data. Based on our experiences with our longitudinal HRQL cardiac surgery patients, we will address the challenges this type of study pose and ways to overcome them. HRQL data, in general, is captured at a few time points – ideally one before an intervention and then at some point(s) post intervention. Much of the HRQL literature is reported from studies that were not prospectively designed and is merely a retrospective analysis; even if prospectively designed it is often flawed. Frequently the data collection time points are loosely defined and the other data collected, to be used to make associations with the HRQL data, is lacking. We will outline the key elements in prospectively designing health survey studies that enable you to evaluate appropriate outcomes. We will also address the personnel and space requirements that are needed initially as well as the challenges faced with program growth. Presently, our research team includes: a medical director, a research administrator, a clinical research administrator, a database administrator, and a biostatistician. As our program grows, we are finding a need for more personnel.