Barriers to the Use of Patient-Reported Outcomes in Clinical Care
I am conflicted in writing this Editorial Perspective. For over 20 years, I have been advocating for greater inclusion of patients’ perspectives of their disease into the outcomes of clinical trials, into the methods for quality assessment/improvement, and as a basis for shared medical decision making. I have developed disease-specific measures for coronary artery disease, heart failure, and peripheral artery disease.1–3 Although some may say this perspective is self-serving, I think I have gained important insights into the barriers of health status assessments and wish to articulate the challenges I see.
Patient-reported outcomes (PROs) quantify patients’ perspectives about the frequency and severity of their symptoms, how their disease impacts their functioning, and the degree to which it limits their quality of life. Over the past several decades, numerous PROs, both generic and disease-specific, have been created, and the methodology for creating such measures has become increasingly codified. A PRO should be valid, reproducible over time in stable patients, and sensitive to clinical changes when they occur.4 Accordingly, PROs can be selected for a variety of conditions that are not only valid, reliable, sensitive to changes in disease status (or treatment), but also prognostic of clinical events, costs, and mortality. Moreover, they are probably the best assessment of the impact of a disease on patients’ health status and are far more reproducible than clinician-reported outcomes, such as the New York Heart Association (NYHA) or the Canadian Cardiovascular Society Classification.5,6 Yet, despite over a decade of calls for these measures to be included in routine clinical care, they are seldom used.7
In November 2013, the Patient-Centered Outcomes Research Institute held a 2-day conference in which multiple healthcare stakeholders assembled to discuss the importance of including PROs in electronic health records and clinical care. Numerous …