OPEX: Development of a novel overall patient experience measure to facilitate interpretation of comparison effectiveness studies

Liana Fraenkel, Zhenglin Wei, Christine Ramsey, Carole Wiedmeyer, Kaleb Michaud, Tuhina Neogi, W. Benjamin Nowell, Shilpa Venkatachalam, David A. Broniatowski

Research output: Contribution to journalArticlepeer-review

5 Scopus citations


Objectives A measure that encompasses both benefits and harms at the individual patient level may facilitate comparisons between treatment options and improve shared decision-making. The objective of this study was to develop a patient reported measure to capture overall experience (including both benefits and harms) of treatment using rheumatoid arthritis (RA) as a case example. Methods Hierarchies for treatment benefits are known. Therefore, we developed a hierarchy of adverse events (AEs) using a series of trajectory mapping and paired comparison surveys. We subsequently used these data to construct a paired comparison survey, asking patients to compare options including both a specified level of benefit and an AE. These data were used to generate a hierarchy of overall experience on treatment. Results 782 participants completed a series of three surveys. The trajectory mapping procedure and a paired comparison survey led to the generation of a hierarchy of AEs with nine levels ranging from No AEs to irreversible serious complications. In a third survey, in which AEs were paired with benefits, participants' ratings generated a 6-level hierarchy of overall experiences ranging from Major improvement + No, mild or manageable AEs (Level 1) to No improvement + Irreversible AEs (Level 6). Conclusions Using a trajectory mapping approach, we developed a patient reported measure representing the distribution of patients' overall experiences on treatment. The intent of this measure is to enable patients and their physicians to compare the percentage of patients experiencing each level of outcome, from most to least desirable, across treatments.

Original languageEnglish (US)
Article numbere0245598
JournalPloS one
Issue number1 January
StatePublished - Jan 2021

ASJC Scopus subject areas

  • General


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