A Patient Reported Outcome Ontology: Conceptual Issues and Challenges Addressed by the Patient-Reported Outcomes Measurement Information System® (PROMIS®)

Abstract

David Cella,1 Ron D Hays2 1Department of Medical Social Sciences, Northwestern University, Chicago, IL, USA; 2Department of Medicine, University of California, Los Angeles, Los Angeles, CA, USACorrespondence: David Cella, Email [email protected]: We briefly review the history of measuring perceptions of health and quality of life, followed by an examination of conceptual issues related to terminology that have led to potentially conflicting ontologies. Then, we discuss challenges posed by the lack of consensus on common meaning and the proliferation of measures. Next, we suggest a solution grounded in an ontology adopted by the National Institutes of Health (NIH) funded Patient-Reported Outcomes Measurement Information System (PROMIS) project. We conclude by discussing issues associated with mapping the PROMIS domain framework onto other familiar ontologies and recommend a way forward for PROMIS to provide a sustainable ontological structure to enable coherent common measurement.Keywords: patient-reported outcomes, quality of life, health-related quality of life, ontology, PROMIS®, patient reported outcomes measurement information system

Keywords

• patient-reported outcomes
• quality of life
• health-related quality of life
• ontology
• promis®
• patient reported outcomes measurement information system