Patient-reported outcomes

Patient-reported outcomes describe health from the patient’s own report, using instruments that turn that experience into data. The parts divide by the measurement question: choosing an instrument, measuring health-related quality of life, interpreting meaningful change, collecting answers electronically, and meeting regulatory expectations for patient experience data. General measurement properties, economic utilities, instrument translation and organising patient involvement belong to neighbouring concerns.

• Patient-reported outcome instruments — definitions and instrument types, choosing for a construct and decision, and use in trials, observational studies, devices and population-level data
• Health-related quality of life — the construct, its models and families of measure, scales and scoring, conditions of use and reporting
• Meaningful change and patient-reported outcomes — distinguishing detectable change from change that matters, setting instrument- and condition-specific thresholds, and reporting them
• Collecting patient-reported outcomes electronically — electronic versus paper collection, computer-adaptive testing and common metrics, routine clinical applications and their cautions
• What regulators expect of patient experience data — the EU initiative, sources of patient experience data, and the evidence expected by regulators and health technology assessment bodies