Research Team:  Bennett, Cella, Chang, Goldman, Hahn, Heinemann, Lai, Von Roenn, Wagner, Yost, Yount

The research focus of this thematic area is to understand and place in appropriate context the QOL of people affected by cancer, from diagnosis and treatment through survivorship. This includes identifying salient physical and psychosocial issues associated with all points on the trajectory of the illness of cancer, including initial diagnosis and treatment, disease-free survival, coping with recurrent disease and death and dying. Additional research includes on measurement and improving measurement models to create more precise, practical and interpretable QOL and treatment outcome data. Other research activities are also in the area of clinical trial design, including analysis and interpretation of QOL data collected in national and international clinical trials. The members of this thematic group spend the majority of their time focusing on cancer, and this focus is rewarded by the RHLCCC provision of fellow and junior faculty small grant awards to stimulate pilot activity directed toward cancer. Specific examples are Drs. Yost, Lai, and Yount, each of whom has received direct or indirect RHLCCC support for pilot research over the past 5 years. While they could focus their efforts in any number of areas, these formally trained social and measurement scientists have opted to place their primary research emphasis on cancer. This is because the RHLCCC has proactively provided incentives to these scientists to apply for cancer-targeted research questions that require their unique expertise. Drs. Chang and Lai, trained in educational measurement techniques, have brought new perspective and methods to the health status measurement field. Working with Dr. Cella, they are among the pioneers introducing item response theory techniques and applications to health-care measurement. Dr. Cella's R01 award (CA60068) was the first NCI award to bring item response modeling to oncology application. As mentioned, this has now grown into a subsequent competing continuation R01 and the Roadmap PROMIS Coordinating Center responsibility. The NIH Roadmap initiative was designed to provide a framework for optimizing NIH-funded research across the NIH institutes. One of its objectives was to establish a more efficient infrastructure for conducting clinical research. Towards this goal, the NIH funded an initiative in dynamic assessment of patient-reported chronic disease outcomes known as the Patient-Reported Outcomes Measurement Information System (PROMIS). PROMIS aims to build and validate a set of item banks to measure key symptoms and health concepts generalizable to a range of chronic health conditions, which will enable efficient and interpretable clinical trial research and clinical practice application of patient-reported outcomes. Dr. Cella directs the Statistical Coordinating Center for PROMIS and is also directing a funded expansion into cancer to enhance the cancer-relevance of existing banks and to identify potential new cancer-relevant bank domains. Drs. Lai, Yount, Wagner, and Yost, and Ms. Hahn, are RHLCCC member collaborators.

Dr. Cella also directs a national, multiple-industry-sponsored project with the National Comprehensive Cancer Network (NCCN) and local community organizations investigating patient-based priorities for symptoms and concerns to be monitored while treating advanced cancer. Ms. Hahn, a medical sociologist and biostatistician who came from the cardiovascular clinical trials area, has become a valued independent investigator for the RHLCCC, and has embarked on R01 research funded by AHRQ, NCI, and NHLBI to develop and test multimedia computer-based programs to facilitate QOL and health literacy assessment of English- and Spanish-speaking patients with low literacy skills. In an American Cancer Society-funded project, Drs. Cella and Bennett collaborated to assess QOL among low literacy individuals with prostate cancer. This work continues with national funding from the Health Services Research and Development program of the Department of Veterans Affairs and the American Cancer Society supporting a study of QOL and patterns of care for prostate cancer patients who experience PSA failure and who receive care at the VA Medical Centers, the University of Illinois, and the Cook County Medical Center. By formally bringing together and providing shared resource and small grant incentives to Dr. Cella's and Bennett's groups, the RHLCCC promotes these intra-programmatic interactions. These examples illustrate the many opportunities for cancer focus among the multidisciplinary group of investigators in this thematic area.

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