@article{a163f9d693d84577a22d48149b19169b,
title = "The king's foot of patient-reported outcomes: Current practices and new developments for the measurement of change",
abstract = "Purpose: Assessing change remains a challenge in patient-reported outcomes. In June 2009, a group of psychometricians, biostatisticians, and behavioral researchers from other disciplines convened as a Longitudinal Analysis of Patient-Reported Outcomes Working group as part of the Statistical and Applied Mathematical Sciences Institute Summer Psychometric program to discuss the complex issues that arise when conceptualizing and operationalizing {"}change{"} in patient-reported outcome (PRO) measures and related constructs. This white paper summarizes these issues and provides recommendations and possible paths for dealing with the complexities of measuring change. Methods/Results: This article presents and discusses issues associated with: (1) conceptualizing and operationalizing change in PRO measures; (2) modeling change using state-of-the-art statistical methods; (3) impediments to detecting true change; (4) new developments to deal with these challenges; and (5) important gaps that are fertile ground for future research. Conclusions: There was a consensus that important research still needs to be performed in order develop and refine high-quality PRO measures and statistical methods to analyze and model change in PRO constructs.",
keywords = "Longitudinal studies, Outcome assessment (Health Care), Psychometrics, Quality of life, Response shift, Statistical models",
author = "Swartz, {Richard J.} and Carolyn Schwartz and Ethan Basch and Li Cai and Fairclough, {Diane L.} and Lori McLeod and Mendoza, {Tito R.} and Bruce Rapkin",
note = "Funding Information: Acknowledgments The authors would like to thank the Statistical and Applied Mathematical Sciences Institute (SAMSI) for supporting the working group. The authors would also like to acknowledge editorial critique from Lee Ann Chastain and William Carmichael. The first author would like to note that he recently changed positions and can now be contacted at Rice University, but most of the work in this manuscript occurred while he was at The University of Texas M. D. Anderson Cancer Center and his funding came from Career development grant K07-CA-113641 (Principal Investigator Richard J. Swartz, Ph.D.) from the National Cancer Institute. Li Cai{\textquoteright}s research is made possible by grants from the Institute of Education Sciences (R305B080016, Principal Investigator Li Cai, Ph.D., and R305D 100039, Principal Investigator Noreen Webb, Ph.D.) and grants from the National Institute on Drug Abuse (R01DA026943 Principal Investigator Maria Orlando Edelen, Ph.D. and R01DA030466 Principal Investigator Li Cai, Ph.D.). Tito R. Mendoza and Charles S. Cleeland were funded in part by grants from the National Cancer Institute: RO1CA026582 (Principal Investigator Charles S. Cleeland Ph.D.) and 5P01CA124787 (Principal Investigator Charles S. Clee-land, Ph.D.). The authors also thank the two reviewers and the Editor for their helpful critiques and comments.",
year = "2011",
month = oct,
doi = "10.1007/s11136-011-9863-1",
language = "English (US)",
volume = "20",
pages = "1159--1167",
journal = "Quality of Life Research",
issn = "0962-9343",
publisher = "Springer Netherlands",
number = "8",
}
