The British Society for Rheumatology clinical practice guidelines on giant cell arteritis: five years in the making
By Sarah Mackie and Peter Lanyon
Six years ago, BSR convened a working group of international experts in GCA, chaired by Professor Bhaskar Dasgupta at Southend University Hospital, to conduct a major update of the 2010 British Society for Rheumatology (BSR) clinical practice guidelines for management of GCA. Now the updated guidelines are finally published. Why did it take so long? Well, this is the story behind it, as told by two of us who were involved from very early on.
Our group started with a survey to establish what patients and clinicians thought were the most important (“critical”) outcomes in GCA. This early stakeholder engagement phase helped the group to design a systematic literature review based around a series of focused questions, covering diagnosis of GCA as well as treatments. A further systematic literature review sought evidence on prognostic factors in GCA. This evidence synthesis aimed to cover all the published literature on GCA that was relevant to the questions that we had posed. After a massive amount of careful work by the systematic literature review team, the first draft of our updated guideline was submitted to BSR for peer review by Professor Bhaskar Dasgupta in 2017.
We were thrown something of a curveball by the fact that 2017 was also the year that tocilizumab was licensed for the treatment of GCA. The group received extensive feedback from the peer review, including advice to include more guidance for clinicians about how to use this newly-approved treatment – which at the time was not funded by the NHS at all. The two major clinical trials of tocilizumab for GCA had been published so recently that they had not been included in the original systematic literature review. We were advised that we needed to completely update all our systematic literature reviews. This was a major undertaking; at this point Sarah Mackie took on a co-lead role to guide the project towards completion. The updating of the systematic literature reviews also identified some other new studies, for example about new evidence in medical imaging for GCA; these other new studies also had to be incorporated into the guidelines. In the process of rewriting the guideline to accommodate this updated evidence, we also addressed the comments of the peer reviewers. This peer review process ultimately proved extremely powerful in helping us to understand the perspective of our target audience. These insights helped us make sure that we communicated our reasoning and conclusions as clearly as possible, and that we stayed relevant to our target audience.
In 2018, NICE published its technology appraisal for tocilizumab for GCA, outlining for what patient groups the NHS would fund tocilizumab for GCA. This stimulated much debate as to how to accommodate this within the guideline, the primary aim of which is to support BSR members, the majority of whom are in the UK, in delivering best care. However, the journal in which the guidelines were to be published has an international readership, and the members of our guideline group were not all UK-based. Diverse perspectives were considered, and identifying a form of wording acceptable to everybody took some time.
We eventually had to update and re-vote on many of the recommendation statements contained in the first draft, and re-write much of the explanatory text. After re-submission to BSR, the new version of the guideline then had to go back through a second round of formal peer review, and finally undergo a stakeholder public consultation phase, which elicited further perspectives that were highly informative.
Finally, the updated guidelines were accepted by BSR and were submitted for publication in late 2019. Five years is a long time, especially as BSR guidelines are supposed to be updated every 3 years. We think it was worth it, but we hope that the next revision will not take quite so long!
You can find the new guidelines via the following links:
Executive summary https://academic.oup.com/rheumatology/advance-article/doi/10.1093/rheumatology/kez664/5714025
Full version https://academic.oup.com/rheumatology/advance-article/doi/10.1093/rheumatology/kez672/5714024