Cancer is predicted to be the leading cause of death in 2010 and with 1.5 million newly diagnosed cases for this year alone, cancer survivors are becoming an increasingly large part of the US population. Patient- reported outcomes (PROs) instruments of health-related quality of life (HRQoL) can capture the experiences of cancer patients, and are increasingly used in clinical trials and other forms of comparative effectiveness research (CER) to characterize decision-relevant health outcomes. The NIH Patient-Reported Outcomes Measurement Information System (PROMIS) Network has developed standardized, valid, and precise PROs measures for CER. While these tools provide domain-specific scores, scores alone do not express the value or importance of specific domains or summarize HRQoL across domains from the perspective of cancer patients. Thus, there is a need to facilitate CER by translating PROMIS PROs into decision-relevant health outcome values. In the proposed study, we will recruit members of the general public and cancer survivors (breast, prostate, colorectal) to complete a discrete choice experiment (DCE) to value PROMIS-29 outcomes. The PROMIS-29 instrument includes 7 HRQoL scales (physical function, pain interference, fatigue, depression, anxiety, sleep disturbance, and social role-participation) measured by 4 items/questions each, and a pain intensity scale measured by a single item.
Specific aims of the project are (1) to value PROMIS-29 outcomes from a societal perspective, and (2) to value PROMIS-29 outcomes from a cancer survivor perspective. By aggregating HRQoL domains into decision-relevant values from a societal and cancer survivor perspective, CER can better differentiate treatment outcomes and enhance the translation of its findings to clinical practice. Since living with cancer may alter a person's values for HRQoL outcomes, discrepancies between cancer survivor and general public values must be understood and accounted for in CER, patient-centered decision- making, and public health resource allocation. Although the general public is considered the central stakeholder for CER and allocation of public resources, the values of experienced patients may better inform prospective patients of the burden associated with cancer therapies. Incorporating these values with PROs in CER can help NIH achieve its goal of improving the Nation's health and economic well-being by increasing the availability of decision-relevant information that can be applied at the patient and societal level.
Sponsored by the National Institutes of Health (NIH), the Patient-Reported Outcomes Measurement Information System (PROMIS) has developed standardized patient-reported outcome (PRO) measures that assess health-related quality of life (such as pain or fatigue);however, these measures do not reflect the importance or value people place on specific health outcomes. By translating PROMIS PROs into health values, the proposed study will enhance comparative effectiveness research and improve medical-decision making by incorporating the values of cancer survivors and the general public.
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