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Why Are Patient-Reported Outcomes Important in the CERTAIN Learning Healthcare System?

The increasing integration of delivery systems provides an opportunity to manage the entire patient-focused episode of care and to assess the impact of care on patient outcomes, including patient-reported outcomes (PROs).(1) PROs are any report coming directly from the patient, without interpretation or influence by a clinician or caregiver, about how they function or feel in relation to their health, a specific condition or disease, or treatment.(2) Patient interviews, self-completed questionnaires, diaries, or other data collection tools such as hand-held devices and web-based platforms are common approaches to obtaining such evaluations. 

Why do we collect them in CERTAIN and SCOAP projects? PROs provide patients' perspectives on treatment or health experiences. PROs complement traditional clinical measures such as length of survival, measures of disease, and physiologic markers. Most importantly, they are often the outcomes of greatest importance to patients. How will I feel? Will I be able to do the things I enjoy doing? Reports from patients are the best way to answer these questions. We collect reports from patients, including their evaluation of symptoms, reports of abilities and limitations, and general perceptions of well-being. Reports collected may also include adverse events or re-hospitalizations.

Important PRO Terms(3)

  • Functional status: An individual's effective performance of or ability to perform those roles, tasks, or activities that are valued (e.g., going to work, playing sports, or maintaining the house).
  • Health-related quality of life (HRQOL): Personal health status. HRQOL usually refers to aspects of our lives that are dominated or significantly influenced by our mental or physical well-being.
  • Quality of life: An evaluation of all aspects of our lives, including, for example, where we live, how we live, and how we play.  It encompasses such life factors as family circumstances, finances, housing and job satisfaction.
  • Well-being: Subjective bodily and emotional states; how an individual feels; a state of mind distinct from functioning that pertains to behaviors and activities.

Selecting PRO measures is driven by the type of information desired. For example, a generic measure that assesses all relevant aspects of health related quality of life (such as mobility, daily care, and emotional well-being) is useful when trying to understand perceptions of health across diverse populations.  Disease-specific or condition-specific measures may be more appropriate when trying to understand how the severity, symptoms, or functional limitations specific to a particular condition or disease state affect an individual or patient population. 

The collection of PROs through research and quality initiatives provides a unique opportunity to incorporate patient-centered data into clinical practice. Such information provides real-world data on patients’ long-term perception of health outcomes and experiences with a disease, condition or  given treatment. Clinicians, health-systems administrators and patients can leverage this data to better inform their understanding and decisions for healthcare.

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  • CERTAIN Medical Director Dr. David Flum on The Conversation with Ross Reynolds 4/11/12: listen here.