Stakeholders in outcome measures: review from a clinical perspective.

BACKGROUND: Modern interest in patient-reported outcomes measures (PROMs) in orthopaedics dates back to the mid-1980s. While gradual growth of activity in this area has occurred over the past 25 years, the extent to which this research methodology is applied in clinical practice to improve patient care is unclear. WHERE ARE WE NOW?: Historically, clinical research in orthopaedics has focused on the technical success of treatment, and objective indicators such as mortality, morbidity, and complications. By contrast, the PROMs framework focuses on effects of treatment described in terms of relief of symptoms, restoring functional ability, and improving quality of life. PROMs can be used to study the relative effects of disease, injury, and treatment across different health conditions. WHERE DO WE NEED TO GO?: All clinical research should begin with identifying clear and meaningful research questions so that the resources and efforts required for data collection result in useful data. Different consumers of research data have different perspectives on what comprises meaningful information. Involving stakeholders such as patients, providers, payers, and policy-makers when defining priorities in the larger research endeavor is one way to inform what type of data should be collected in a particular study. HOW DO WE GET THERE?: Widespread collection of outcomes data would potentially aid these stakeholders by identifying best practices, benefits and costs, and important patient or practice characteristics related to outcomes. Several initiatives currently underway may help systematic collection of PROMs, create efficient systems, and foster collaborations to provide support and resources to minimize costs.