title: Progress on incorporating the patient perspective in outcome assessment in rheumatology and the emergence of life impact measures at OMERACT 9.
abstract: The Patient Perspective Workshop included over 100 researchers and 18 patient participants from 8 countries. Following preconference reading and short plenary presentations, breakout groups considered work undertaken on measurement of sleep, assessing interventions to develop the effective consumer, and assessing psychological and educational interventions. The workshop explored the best way to identify other outcome domains (and instruments) that should be measured in observational or interventional studies with broader intentions than simply altering outcomes captured in the traditional "core set" plus fatigue. Four sleep questionnaires showed promise and will be the subject of further study. The Effective Consumer scale (EC-17) was reviewed and the concept Effective Consumer was well received. Participants thought it worthwhile to measure the skills and attributes of an effective consumer and develop an intervention that would include education in all of the scale's categories. Assessment of educational and psychological interventions requires a wider set of instruments than is currently used; these should relate to the purpose of the intervention. This principle was extended to include wider measures of the impact of disease on life, as indicated in the International Classification of Functioning, Disability and Health. Life impact measure sets covering domains appropriate to different rheumatic conditions and focused on different interventions might be defined by future OMERACT consensus. Measurement instruments within these domains that are valid for use in rheumatic conditions can then be identified and, in the case of psychological and educational interventions, chosen to fit with the purpose of the intervention.
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
authors.forename: Sarah
authors.initials: S
authors.lastname: Hewlett
authors.forename: Leanne
authors.initials: L
authors.lastname: Idzera
authors.forename: Britta
authors.initials: B
authors.lastname: Laslo
authors.forename: Lyn M
authors.initials: LM
authors.lastname: March
authors.forename: Patricia
authors.initials: P
authors.lastname: Minnock
authors.forename: Pam
authors.initials: P
authors.lastname: Montie
authors.forename: Jo
authors.initials: J
authors.lastname: Nicklin
authors.forename: Tamara
authors.initials: T
authors.lastname: Rader
authors.forename: Pamela
authors.initials: P
authors.lastname: Richards
authors.forename: Tessa C
authors.initials: TC
authors.lastname: Sanderson
authors.forename: Maria
authors.initials: M
authors.lastname: Suarez-Almazor
authors.forename: Elizabeth
authors.initials: E
authors.lastname: Tanjong-Ghogomu
authors.forename: Erin
authors.initials: E
authors.lastname: Ueffing
authors.forename: Vivian
authors.initials: V
authors.lastname: Welch
mesh_terms: D006801:Humans; D017063:Outcome Assessment, Health Care; D010353:Patient Education as Topic; D012216:Rheumatic Diseases / Q000523:psychology*; D012649:Self Concept; D012890:Sleep