RT Journal Article
SR Electronic
T1 Progress on Incorporating the Patient Perspective in Outcome Assessment in Rheumatology and the Emergence of Life Impact Measures at OMERACT 9
JF The Journal of Rheumatology
JO J Rheumatol
FD The Journal of Rheumatology
SP 2071
OP 2076
DO 10.3899/jrheum.090360
VO 36
IS 9
A1 JOHN R. KIRWAN
A1 STANTON NEWMAN
A1 PETER S. TUGWELL
A1 GEORGE A. WELLS
A1 SARAH HEWLETT
A1 LEANNE IDZERA
A1 BRITTA LASLO
A1 LYN M. MARCH
A1 PATRICIA MINNOCK
A1 PAM MONTIE
A1 JO NICKLIN
A1 TAMARA RADER
A1 PAMELA RICHARDS
A1 TESSA C. SANDERSON
A1 MARIA SUAREZ-ALMAZOR
A1 ELIZABETH TANJONG-GHOGOMU
A1 ERIN UEFFING
A1 VIVIAN WELCH
YR 2009
UL http://www.jrheum.org/content/36/9/2071.abstract
AB 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.