P71 Working collaboratively with patients as research partners in the co-production of the WASTEd: a measure of fatigue and energy in axial spondyloarthritis (axSpA)
Authors: Pearson Nathan A , Strickland George , Thompson Jean , Martindale Jane , Tutton Elizabeth , Parsons Helen , Packham Jonathan , Haywood Kirstie 
Published: April 2020

Background

The last decade has witnessed significant growth in the active involvement of patients as research partners (PRPs) in health and social care research to facilitate a stronger patient-focus in research endeavours and outputs. Whilst general guidance is available - e.g. INVOLVE - there is limited guidance pertaining to how one should collaborate with patients as partners in the development of patient-reported outcome measures (PROMs). Here, we describe our active collaboration with patients as research partners in the co-production of a new PROM: the Warwick Axial Spondyloarthritis measure of faTigue and Energy (WASTEd).

Methods

An established PRP group contributed to the development of the initial funding application, whom received training and support from the PRP group facilitator (JM). The key stages for PRP collaboration throughout the PROM development process were jointly agreed and included: developing qualitative research topic guides and supporting data analysis; supporting development and refinement of the measurement framework to underpin the new PROM, and; supporting question (item) generation and refinement following both qualitative and quantitative explorations. All key decisions were made following face-to-face meetings between the lead research and the PRP group.

Results

Six face-to-face meetings were held over 2.5 years (average meeting duration 2 hours; range 1.5 to 3 hours) with between three and eight PRP members attended each meeting. Additional e-mail correspondence and summary reports were shared between meetings. The group contributed across all project stages including: developing ethics applications which included assessing the acceptability of the study to patients; generating interview topic guides and verbal probes for key issues identified by the PRP group; interpreting qualitative data with the lead researcher; co-designing and editing the draft PROM and refining the long form version of the PROM using both qualitative and statistical data. PRP collaboration was particularly integral to the appropriate use of relevant language and, most substantively, in providing a clearer understanding of the distinction between fatigue and energy.

Conclusion

The active collaboration with PRPs has supported the co-production of a relevant and acceptable PROM, driven by the needs and perspectives of patients. Additionally, the PRP groups were able to ensure all refinement decisions made to the PROM did not undermine the content validity of the measure. Finally, their involvement has sought to act as a check, support and challenge on inferences drawn by the researchers, enriching the process and study outcomes.

Disclosures

N.A. Pearson None. G. Strickland None. J. Thompson None. J. Martindale Honoraria; JM has received speaker fees and/or honoraria from Abbvie Ltd, Novartis, Pfizer and UCB. Grants/research support; JM has received a research grant from Pfizer. E. Tutton None. H. Parsons None. J. Packham None. K. Haywood None.