Progress on incorporating the patient perspective in outcome assessment in rheumatology and the emergence of life impact measures at OMERACT 9.

Hdl Handle:
http://hdl.handle.net/10147/146381
Title:
Progress on incorporating the patient perspective in outcome assessment in rheumatology and the emergence of life impact measures at OMERACT 9.
Authors:
Kirwan, John R; Newman, Stanton; Tugwell, Peter S; Wells, George A; Hewlett, Sarah; Idzera, Leanne; Laslo, Britta; March, Lyn M; Minnock, Patricia; Montie, Pam; Nicklin, Jo; Rader, Tamara; Richards, Pamela; Sanderson, Tessa C; Suarez-Almazor, Maria; Tanjong-Ghogomu, Elizabeth; Ueffing, Erin; Welch, Vivian
Affiliation:
University of Bristol Academic Rheumatology Unit, Bristol Royal Infirmary, Bristol, UK. John.Kirwan@Bristol.ac.uk
Citation:
Progress on incorporating the patient perspective in outcome assessment in rheumatology and the emergence of life impact measures at OMERACT 9. 2009, 36 (9):2071-6 J. Rheumatol.
Journal:
The Journal of rheumatology
Issue Date:
Sep-2009
URI:
http://hdl.handle.net/10147/146381
DOI:
10.3899/jrheum.090360
PubMed ID:
19738216
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.
Item Type:
Article
Language:
en
MeSH:
Humans; Outcome Assessment (Health Care); Patient Education as Topic; Rheumatic Diseases; Self Concept; Sleep
ISSN:
0315-162X

Full metadata record

DC FieldValue Language
dc.contributor.authorKirwan, John Ren
dc.contributor.authorNewman, Stantonen
dc.contributor.authorTugwell, Peter Sen
dc.contributor.authorWells, George Aen
dc.contributor.authorHewlett, Sarahen
dc.contributor.authorIdzera, Leanneen
dc.contributor.authorLaslo, Brittaen
dc.contributor.authorMarch, Lyn Men
dc.contributor.authorMinnock, Patriciaen
dc.contributor.authorMontie, Pamen
dc.contributor.authorNicklin, Joen
dc.contributor.authorRader, Tamaraen
dc.contributor.authorRichards, Pamelaen
dc.contributor.authorSanderson, Tessa Cen
dc.contributor.authorSuarez-Almazor, Mariaen
dc.contributor.authorTanjong-Ghogomu, Elizabethen
dc.contributor.authorUeffing, Erinen
dc.contributor.authorWelch, Vivianen
dc.date.accessioned2011-10-21T13:46:09Z-
dc.date.available2011-10-21T13:46:09Z-
dc.date.issued2009-09-
dc.identifier.citationProgress on incorporating the patient perspective in outcome assessment in rheumatology and the emergence of life impact measures at OMERACT 9. 2009, 36 (9):2071-6 J. Rheumatol.en
dc.identifier.issn0315-162X-
dc.identifier.pmid19738216-
dc.identifier.doi10.3899/jrheum.090360-
dc.identifier.urihttp://hdl.handle.net/10147/146381-
dc.description.abstractThe 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.-
dc.language.isoenen
dc.subject.meshHumans-
dc.subject.meshOutcome Assessment (Health Care)-
dc.subject.meshPatient Education as Topic-
dc.subject.meshRheumatic Diseases-
dc.subject.meshSelf Concept-
dc.subject.meshSleep-
dc.titleProgress on incorporating the patient perspective in outcome assessment in rheumatology and the emergence of life impact measures at OMERACT 9.en
dc.typeArticleen
dc.contributor.departmentUniversity of Bristol Academic Rheumatology Unit, Bristol Royal Infirmary, Bristol, UK. John.Kirwan@Bristol.ac.uken
dc.identifier.journalThe Journal of rheumatologyen

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