Cancer symptoms and side effects: A research agenda

Abstract

Cancer survivors have unique physical, psychological, social, and spiritual health needs. These can include symptoms and side effects associated with cancer and cancer treatment, such as pain, cognitive dysfunction, insomnia, and elevated anxiety and depression. This research brief summarizes a landscape review done for the Patient Centered Outcomes Research Institute (PCORI) to develop a clear, comprehensive understanding of the state of research as of the mid-2000s. 
We conducted a targeted search strategy to identify projects funded by federal and commercial sources and the American Cancer Society (ACS) in addition to identifying funding opportunities released by the National Institutes of Health (NIH). We conducted additional review to identify studies focused on symptom and side-effect measures and five priority topic areas (selected by PCORI prior to the review) in the following five databases (from January 2005- through September 2015) with an inclusion criteria in an adapted PICOTS framework (populations, interventions, comparators, outcomes, time frames, and settings). 
We identified 692 unduplicated studies (1/2005 to 9/2015) and retained 189 studies about cancer symptom and side-effect management. Of these studies, NIH funded 40% and the ACS 33%. Academic institutions, health care systems, other government agencies, and private foundations or industry supported the remainder. 
We identified critical gaps in the knowledge base pertaining to populations, interventions, comparators (when those are relevant for comparative effectiveness reviews), and outcomes. We also discovered gaps in cross-cutting topics, particularly for patient decision-making studies, patient self-management of cancer symptoms and side effects, and coordinated care.