Value Lies in the Eye of the Patients: The Why, What, and How of Patient-Reported Outcomes Measures


PRO information can be obtained in a variety of ways, including face-to-face interviews, questionnaires (via paper, telephone, interactive voice response, the web, or dedicated electronic device), and diaries. Evidence exists around the equivalence of these modes of administration that supports selection based on patients’ or investigators’ preference.40x40Muehlhausen, W., Doll, H., Quadri, N. et al. Equivalence of electronic and paper administration of patient-reported outcome measures: a systematic review and meta-analysis of studies conducted between 2007 and 2013. Health Qual Life Outcomes. 2015 Oct 7;
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,41x41Campbell, N., Ali, F., Finlay, A.Y., and Salek, S.S. Equivalence of electronic and paper-based patient-reported outcome measures. Qual Life Res. 2015 Aug;
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,42x42Bennett, A.V., Dueck, A.C., Mitchell, S.A. et al. Mode equivalence and acceptability of tablet computer-, interactive voice response system-, and paper-based administration of the U.S. National Cancer Institute’s Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE). Health Qual Life Outcomes. 2016 Feb 19;
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When selecting which PRO instruments to use, it is important to consider patient, practitioner, and decision-maker preferences regarding the types of data to collect against patient burden in filling out questionnaires. Other considerations include any physical, cognitive, demographic, or socioeconomic barrier to complete the measurement (user-centered design principles, including usability testing, may be extremely useful in this respect) and the level of psychometric evidence (face and construct validity, reliability, responsive to change, no floor or ceiling effects, and cross-culturally valid) for the questionnaire in the target population.43x43Snyder, C.F., Aaronson, N.K., Choucair, A.K. et al. Implementing patient-reported outcomes assessment in clinical practice: a review of the options and considerations. Qual Life Res. 2012 Oct;
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Reporting of PROs used in clinical research remains suboptimal across randomized clinical trials (RCTs), and these data are considered to be less accessible than outcomes such as survival or the adverse effects of treatment.46x46Brundage, M., Bass, B., Jolie, R., and Foley, K. A knowledge translation challenge: clinical use of quality of life data from cancer clinical trials. Qual Life Res. 2011 Sep;
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