As the number of COS grows it is important to promote and assess their uptake to ensure that the continued development of COS does not lead to research waste through poor uptake and that patients, health professionals and researchers benefit from the COS that have been developed. Assessing uptake also allows developers to consider revision to their COS as part of the ongoing COS process.
A collection of Podcasts highlight the importance of the development and use of COS to people from a range of different backgrounds.
The rheumatoid arthritis core outcome set (RA-COS) was published in 1994, and includes the following outcomes:
- Tender joints
- Swollen joints
- Physician global assessment
- Patient global assessment
- Physical disability
- Acute phase reactants
The uptake of the RA-COS has been assessed in three linked studies.
The first assessment was an observational review looking at 350 randomised trials for the treatment of rheumatoid arthritis identified through The Cochrane Library (up to and including September 2012). Reports of these trials were evaluated to determine whether or not there were trends in the proportion of trials reporting on the full COS over time. This review suggested that in 2009, 60-70% of trialists conducting trials in patients with RA were measuring the RA-COS.
A second assessment of uptake was conducted using a rapid review approach using planned and reported outcomes listed on the clinical trials registry ClinicalTrials.gov. This study demonstrated that over 80% of trials that involved a pharmacological treatment for RA were measuring the full RA-COS by 2016.
A third uptake assessment was carried out looking at all clinical trials of RA indexed on the World Health Organization-International Clinical Trials Registry Platform (WHO-ICTRP). This study showed that uptake of the RA-COS has been maintained at just over 80% between the previous evaluation and 2018.
Reprinted from "Journal of Clinical Epidemiology, Volume 115, Kirkham JJ, Bracken M, Hind L, Pennington K, Clarke M, Williamson PR, Industry funding was associated with increased use of core outcome sets, Pages 90-97, 2019", with permission from Elsevier.
Hughes KL, Clarke M, Williamson PR. A systematic review finds core outcome set uptake varies widely across different areas of health. Journal of Clinical Epidemiology. 2020.
For more information, please view here or contact Karen Hughes.
Tell us about a new/missing assessment of a COS uptake study.
Akinremi A, Turnbull AE, Chessare CM, Bingham CO, 3rd, Needham DM, Dinglas VD. Delphi panelists for a core outcome set project suggested both new and existing dissemination strategies that were feasibly implemented by a research infrastructure project. J Clin Epidemiol. 2019;114:104-7.
Hughes KL, Kirkham JJ, Clarke M, Williamson PR. Assessing the impact of a research funder's recommendation to consider core outcome sets. PLoS One. 2019;14(9):e0222418.
Tong A, Crowe S, Gill JS, Harris T, Hemmelgarn BR, Manns B, et al. Clinicians' and researchers' perspectives on establishing and implementing core outcomes in haemodialysis: semistructured interview study. BMJ open. 2018;8(4):e021198.
Tong A, Manns B, Wang AYM, Hemmelgarn B, Wheeler DC, Gill J, et al. Implementing core outcomes in kidney disease: report of the Standardized Outcomes in Nephrology (SONG) implementation workshop. Kidney international. 2018;94(6):1053-68.
Karen Hughes is undertaking a PhD focusing on methods to assess and improve the uptake of core outcome sets by clinical trialists. The aims of Karen’s PhD are to investigate an efficient method to assess uptake; assess the impact of an existing strategy to improve uptake; and carry out qualitative interviews with clinical trialists to explore the barriers and facilitators to uptake.
A survey of ongoing and published COS developers is currently underway, through COMET, to investigate COS developers’ approaches and attitudes to the uptake of COS. For more information, please contact Elizabeth Gargon.
Red Hat Group members are currently working together on a project to share knowledge and understanding of mechanisms to promote uptake of COS in comparative effectiveness research.