title: Patient involvement in outcome measures for psoriatic arthritis.
abstract: Psoriatic arthritis (PsA) is a heterogeneous inflammatory arthritis with a varied clinical phenotype. There has been considerable international collaboration over recent years to develop and prioritise appropriate disease domains and outcome measures to capture all aspects of this complex disease. It has been recognised that patient-reported measures and physician assessments are complementary and, when used together, allow an improved reflection of disease burden. Taking this concept one step further, the experience in rheumatoid arthritis has demonstrated benefits of incorporating the patient perspective in the development of outcome measures. We report a systematic review demonstrating (1) that there has been little incorporation of the patient perspective in the development of outcome measures and domains in PsA, (2) the proceedings from the preliminary patient involvement in outcome measures for PsA (PIOMPSA) meetings, and (3) a proposed roadmap for improving patient involvement.
authors.affiliation: Royal National Hospital for Rheumatic Diseases, Upper Borough Walls, Bath, BA11RL, UK, w.tillett@nhs.net.
authors.forename: William
authors.initials: W
authors.lastname: Tillett
authors.forename: Ade
authors.initials: A
authors.lastname: Adebajo
authors.forename: Mel
authors.initials: M
authors.lastname: Brooke
authors.forename: Willemina
authors.initials: W
authors.lastname: Campbell
authors.forename: Laura C
authors.initials: LC
authors.lastname: Coates
authors.forename: Oliver
authors.initials: O
authors.lastname: FitzGerald
authors.forename: Laure
authors.initials: L
authors.lastname: Gossec
authors.forename: Philip
authors.initials: P
authors.lastname: Helliwell
authors.forename: Sarah
authors.initials: S
authors.lastname: Hewlett
authors.forename: Jana
authors.initials: J
authors.lastname: James
authors.forename: Patricia
authors.initials: P
authors.lastname: Minnock
authors.forename: Aisling
authors.initials: A
authors.lastname: Reast
authors.forename: Dennis
authors.initials: D
authors.lastname: O'Sullivan
authors.forename: Maarten
authors.initials: M
authors.lastname: de Wit
authors.forename: Neil
authors.initials: N
authors.lastname: McHugh
mesh_terms: D015535:Arthritis, Psoriatic / Q000188:drug therapy*; D006801:Humans; D017063:Outcome Assessment, Health Care; D010358:Patient Participation; D012720:Severity of Illness Index; D016896:Treatment Outcome