| Fatigue in RA S. Hewlett |
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Research with patients generated the questionnaire items and wording and timeframe -
Cognitive interviewing refined the wording -
Patient partners assisted with qualitative analysis; factor interpretation/labelling; questionnaire order and layout -
Researchers formed the link between cyclical iterations of work with patients as participants and patients as partners
| Development of PRO. Is it necessary to go through the whole process followed for fatigue or is it possible to simplify this? |
| Flare in RA: How to maintain patient partner involvement A. Leong, P. Montie |
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Patient involvement at OMERACT has evolved since 2002 and patients now play an integral role in the research process -
The inclusion of patients has resulted in expanded depth and breadth of the research -
Key concepts identified: (1) mutual belief in the role and importance of patient collaboration in research; (2) responsibility of engagement at all levels in the working group; (3) equal opportunity to speak up and participate; and (4) validity of expertise qualified by experience of living with a chronic disease -
The model of patient involvement followed by the RA Flare Working Group can be applied across other working groups, therapeutic areas, and diseases
| Patient education, patient involvement throughout, applicability and differences across conditions? |
| Flare in RA: Patient partner methodology S. Bartlett, J. May |
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Patient partners have been integrated into all aspects of work from the beginning from conceptualization, design developing interview questions, coding of focus group transcripts, communicating results in Delphi rounds, interpreting and disseminating results -
Patient partners also have initiated efforts through presentations at scientific meetings and developing manuscripts to describe their experience and the personal influence of partnering in rheumatology research -
Participation is associated with greater insight and awareness, which has both positive and negative consequences for patients
| How to assess patient’s perspective? How to facilitate the integration of patient research partners throughout the process? How to combine all points of view? |
| Patient global J. Kirwan |
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Patient global visual analog scale is an integral part of the RA disease activity score14, a key measure in clinical practice and clinical trials. -
Recent work demonstrates that different wording, used in different centers, produces different DAS scores, which have clinical consequences15 -
Patient global is a measure of the burden of disease, a composite of disease severity, the importance to the patient of the consequences of disease and their ability to self-manage their condition16
| What is patient global measuring? Is it really measuring the effect on life? Research agenda for patient global? |
| Cross-cultural validations F. Guillemin |
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Using PRO across different cultures requires more than simple translation: forward-backward translations plus expert committee are minimum required steps to preserve the truth (Filter 1.0) -
A good content validity (truth) is a prerequisite in the choice of PRO measurement instruments before starting cross-cultural adaptation -
Cross-cultural validation is critical to allow correct interpretation of results of international, multicultural trials -
Research is ongoing to seek evidence of the relative contribution of each step of current recommendations
| Translations and cross-cultural validity — how far do we need to go? Is it practical to expect all PRO to meet these criteria? |