Developing an International Standard Set of Patient-Reported Outcome Measures for Psychotic Disorders
Emily McKenzie, Lucy Matkin, Luz Sousa Fialho, Ifeoma Nneka Emelurumonye, Timea Gintner, Christiana Ilesanmi, Beth Jagger, Shannon Quinney, Élizabeth Anderson, Lone Baandrup, Amrit Kumar Bakhshy, Alison Brabban, Tim Coombs, Christoph U. Correll, Caroline Cupitt, Anju Keetharuth, Dania Nimbe Lima, Paul McCrone, Mary D. Moller, Cornelis L. Mulder, David Roe, Grant Sara, Farhad Shokraneh, Jacqueline Sin, Kristen A. Woodberry, Donald Addington
Abstract
OBJECTIVE: The objective of this project was to develop a set of patient-reported outcome measures for adolescents and adults who meet criteria for a psychotic disorder. METHODS: A research team and an international consensus working group, including service users, clinicians, and researchers, worked together in an iterative process by using a modified Delphi consensus technique that included videoconferencing calls, online surveys, and focus groups. The research team conducted systematic literature searches to identify outcomes, outcome measures, and risk adjustment factors. After identifying outcomes important to service users, the consensus working group selected outcome measures, risk adjustment factors, and the final set of outcome measures. International stakeholder groups consisting of >100 professionals and service users reviewed and commented on the final set. RESULTS: The consensus working group identified four outcome domains: symptoms, recovery, functioning, and treatment. The domains encompassed 14 outcomes of importance to service users. The research team identified 131 measures from the literature. The consensus working group selected nine measures in an outcome set that takes approximately 35 minutes to complete. CONCLUSIONS: A set of patient-reported outcome measures for use in routine clinical practice was identified. The set is free to service users, is available in at least two languages, and reflects outcomes important to users. Clinicians can use the set to improve clinical decision making, and administrators and researchers can use it to learn from comparing program outcomes.