patientreported

Patientreported refers to information provided directly by patients about their health status, well-being, or experiences with care, without interpretation by clinicians or researchers. The term is often written as patient-reported, and it encompasses patient-reported outcomes (PROs) as well as patient-reported experience measures (PREMs). These concepts are used to capture the patient perspective in health care and research.

PROs measure aspects of health that matter to patients, such as symptoms, functional status, and health-related quality of life, usually related to a specific condition or treatment. PREMs assess patients’ experiences with care, including access, communication, and satisfaction. Both PROs and PREMs can inform clinical decision-making, support shared decision-making, and serve as endpoints in clinical trials, routine care, health technology assessment, and regulatory evaluations.

Data for patient-reported information are typically collected through validated instruments such as questionnaires, diaries, or electronic tools (web portals and mobile apps). Widely used generic PRO measures include instruments like the SF-36 or EQ-5D, while patient-reported outcomes specific to a disease or treatment are common. PROMIS is an example of a standardized, patient-reported measurement framework. PREMs may rely on survey instruments designed to capture care experiences and satisfaction. Instruments require validation and, when used across languages and cultures, careful translation and cross-cultural adaptation.

Advantages of patient-reported information include the ability to capture subjective symptoms and quality-of-life aspects that may not be evident to clinicians and to support person-centered care. Challenges include response burden, missing data, potential biases, literacy and language barriers, and integration with clinical workflows and health records.