title: Patient perspective on outcomes in rheumatology -- a position paper for OMERACT 9.
abstract: The inclusion of patient participants at OMERACT has resulted in direct incorporation of the patient perspective in the development of outcome assessments in rheumatology. Fatigue has been adopted as a recommended measure in all studies, and further work is now under way on the assessment of sleep, effective healthcare consumers, and the effects of psychological or educational interventions. This position paper draws this work together in preparation for the Patient Perspective Workshop at OMERACT 9, and introduces the concept that other core outcomes relevant to patients might be required in assessing interventions designed to help patients live with their disease.
authors.affiliation: University of Bristol Academic Rheumatology Unit, Bristol Royal Infirmary, Bristol, UK. John.Kirwan@Bristol.ac.uk
authors.forename: John R
authors.initials: JR
authors.lastname: Kirwan
authors.forename: Stanton
authors.initials: S
authors.lastname: Newman
authors.forename: Peter S
authors.initials: PS
authors.lastname: Tugwell
authors.forename: George A
authors.initials: GA
authors.lastname: Wells
mesh_terms: D006801:Humans; D017063:Outcome Assessment, Health Care; D010353:Patient Education as Topic; D012216:Rheumatic Diseases / Q000523:psychology*; D012649:Self Concept; D012890:Sleep