Dossier n. 238/2014 [Abstract] Patient-reported outcome(s) (PROs). Concepts, methods, tools

The report collects and critically organizes information and experiences related to “patient-reported outcomes” issue, with the aim of preparing a tool for those who for the first time approach this field of research, assessment and intervention. The work is the result of an overview on international scientific references and websites covering the last two decades, and it is structured into four Chapters.

The first one proposes a theoretical framework, the “patient-centredness”, within which the concept of “patient-reported outcomes” can be placed, and an analysis of its origins and definitions.

The second Chapter illustrates the patient-reported outcome tools and measures, that the international literature classifies into two broad categories. As examples of these categories, two instruments are analyzed: the EQ-5D, a general measure, and the Oxford Knee Score, a specific one. The concluding section summarizes the main approaches and criteria for selecting the questionnaire.

The third Chapter focuses on two international experiences, the NHS Patient-Reported Outcome Measures Programme in the United Kingdom and the Patient-Reported Outcomes Measurement Information System in the United States, representing two different ways of application of patient-reported outcome measures. In the United Kingdom experience these measures are used for healthcare quality assessment, whereas in the United States experience they are used for the research, clinical, epidemiological, and comparative effectiveness research. The last section proposes some reflections on the challenges, both internal and external to healthcare organizations, related to the use of patient-reported outcome measures in the healthcare quality assessment.

The fourth and final Chapter briefly describes the most explicit and clearly defined Italian experiences and publications on patient-reported outcomes, among which there is the study group Moving Toward Patient Reported Outcomes Evidence (PROMOTE) of the Drug Department within the Istituto superiore di sanità.

The Conclusions raise a series of questions about the feasibility of a translation of a quality assessment based on patient-reported outcome measures into healthcare organizations’ practice, highlighting professionals’, policymakers’, and patients’ culture as one of the main issues to take into consideration.