Advances in the Measurement of Patient-Reported Outcomes: Implications for Comparative Effectiveness Research

November 5th-8th, 2017 | 2017 NCRI Cancer Conference, Liverpool, UK

In a session entitled “Quality of Life – from PROMs to ICERs” at the 2017 NCRI Cancer Conference, Dr. Ware will summarize advances in PRO measurement and their implications for effectiveness research. Understanding has never been greater regarding the: (1) breadth of health concepts that are essential for validity in quantifying patient reported outcomes (PROs); (2) importance of matching operational definitions (e.g., behavioral functioning, subjective ill-being and well-being,personal evaluation) to each health concept; (3) advantages of better single items for both psychometric and utility methods; and (4) implications of standardizing metrics across a wide range of higher and lower levels of health to enable comparisons of results across diverse populations. For example,meaningful comparisons can be made between population norms, average scores for treated and untreated groups, and individual scores for patients with mild to severe conditions, using standardized metrics for a composite (psychometric or utility) score or a profile of outcome scores.Because all surveys begin with the first item, at the core of advances in both generic and disease-specific PRO surveys are significantly better single-item measures that can and should be standardized across psychometric and utility methods. Although the enumeration of these measures differs across the two methods, their concept representation and item content should not. For most respondents and for some measurement purposes (e.g., calculation of composite scores), the best single item can be the only one administered for each health concept. The proven features of such “super items” include: better representation of the functioning and/or subjective well-being content describing each concept,coverage of a wider range of health levels to minimize ceiling effects, and response categories that better match the health state levels to the essence of the specific health concept being quantified. This presentation summarizes advances in both the understanding of health concepts and the mastery of operational definitions that enable the standardization of health-related quality of life metrics across methods and purposes.