Patient-Reported Outcomes

University Of Tx Md Anderson Can Ctr, Houston TX

Investigators

Linked publications, trials & patents

Abstract

The goal of the Patient-Reported Outcomes, Survey and Population Research (PROSPR) facility is to support the assessment of patient-reported outcomes and other behavioral outcomes in studies that span the continuum of research at MDACC. The PROSPR core assists investigators with multiple aspects of designing and implementing Patient Reported Outcome (PRO) data. The PROSPR core offers research support to investigators by maintaining a library of questionnaires, designing data collection procedures for PRO and behavioral studies, providing data collection services, (including face-to-face interviews or questionnaire administration in the clinic, telephone interviewing, and mailed surveys) and providing efficient data entry of the collected PRO data. The PROSPR data management team develops information systems to assist investigators in managing study participants and data. The team also develops recruitment and participant tracking databases, creates data entry databases for PRO questionnaire data that have double entry systems for accuracy checking, as well as built-in range and validity checks, and provides analysis datasets for project statisticians, which includes cleaning and scoring the data. The data management team can create tools for automating the assignment of participants to study conditions, for a simple randomization or a form of adaptive randomization called minimization, which is similar to stratification. The PROSPR core facility is housed in 688 square feet of office space in the Cancer Prevention Building within the Department of Behavioral Science. The facility has 9 staff members, which include the director, co-director, core manager, 2 research coordinators, a statistical analyst, and 3 data managers. Over the past 4 years, the PROSPR core has delivered over 9,400 hours of service to 87 users, of which 47% have been peerreviewed funded. In this period, the PROSPR core has provided assistance to 15 programs; Behavioral and Health Disparities accounted for 56% of the utilization, followed by GU, Gynecological, Gl and Breast Cancers which account for 24%. In the future, the PROSPR core intends to 1) offer web-based surveys, and computer adaptive testing (CAT) as the technology becomes available; 2) to more fully utilize CaBIG, which is expanding to include more population science research and; 3) to develop training opportunities for investigators and research staff to increase their skills and knowledge related to research involving PRO data.