Patient-Reported Outcomes Measurement Information System (PROMIS):
How is NCI supporting PROMIS?
The Patient-Reported Outcomes Measurement
Information System (PROMIS) is a publicly available Web-based resource that
can be used to measure key health symptoms and health-related quality of life (HRQOL) domains
such as pain, fatigue, depression, and physical function. These domains are
relevant to a variety of chronic diseases, including cancer.
This project represents a significant step forward to improve our understanding of the
burden of cancer and to increase our ability to monitor patients' function over time. The
measurement tools developed from this project may become the dominant instruments used in
all NIH-supported research.
PROMIS is supported under the NIH Roadmap,
whose initiatives are aimed at fostering collaborations across the NIH Institutes and
Centers in order to improve the clinical research enterprise. The availability of such a
powerful resource will allow the Outcomes Research Branch (ORB) to explore collaborative partnerships with other NCI
Divisions (e.g., Division of Cancer
Prevention, Division of Cancer Treatment and
Diagnosis) that could benefit from such a patient-monitoring system in clinical
trials. It also may be possible to integrate this system with NCI-supported databases
such as the SEER registries and the caBIG project to support a variety of research
Outcomes Research staff are actively involved on the PROMIS project with representation on the PROMIS
Network Steering Committee and scientific contributions to the development of cancer
specific HRQOL domains and development of the analytic plan. ORB also was instrumental in
securing NCI funding for several supplemental PROMIS grants that will ensure that this
research tool generates high-quality measures of HRQOL relevant to and validated for
patients with cancer across the continuum of care. These grants support projects to:
- increase cancer representation in PROMIS network data collection to incorporate patients with diverse ethnic/racial distributions stratified across the cancer continuum;
- add cancer-relevant domains (e.g., illness impact, sexual function, sleep/wake function, and perceived cognitive function);
- identify and address challenges related to PROMIS implementation in multi-center oncology clinical trials;
- enhance the clinical meaningfulness of the PROMIS reporting system for practicing oncologists; and
- develop short form instruments for use in NCI-sponsored clinical trials.