Living with Long COVID: Implementing a living approach to the NICE guideline on managing the long-term effects of COVID-19

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Objectives The aim of this paper is to describe the development, implementation and evaluation of a flexible living approach to maintaining NICE’s long-term effects of COVID-19 (LTE) guideline and monitoring the uncertain evidence base of this condition. Study Design and Setting The NICE COVID-19 team reviewed its practical experiences of establishing a living approach to developing and maintaining the LTE guideline, including initial development, maintenance and eventual transition to a lower intensity model. The methods and processes were described narratively over the first 2 years of the guideline’s lifespan. This was combined with quantitative data on emerging and cumulative evidence over the period to chart the evidence landscape. Results Following publication, the initial timepoint-based update process evolved into a flexible living approach with remote topic expert engagement. Experts engaged with the new process with a 64% response rate to the online surveys. Emerging evidence increased rapidly following publication [11,405 studies assessed in 2021 and 13,181 in 2022] and was captured by continuous surveillance. There were no urgent triggers for updating from the studies identified in 2022 via the living approach, saving considerable resources over the timepoint based approach which would commit resources to planning and convening expert panel meetings. A total of 184 studies with a potential future impact were summarised to capture the cumulative evidence base. Experts highlighted ongoing research and implementation issues which have further informed surveillance of the guideline. After a sustained period without triggers for updating, the living approach was restricted to the highest priority areas with surveillance of ongoing studies. Conclusion This paper illustrates a flexible living approach taken to a novel condition with an evolving evidence landscape. Currency of some living guidelines can be maintained without the need for frequent updating. Highlights: What is new? In an unpredictable pandemic context, novel conditions with uncertain aetiology, diagnosis, management and prognosis demand a flexible living approach to surveillance of initial recommendations, even where triggers for updating remain infrequent. Monitoring cumulative evidence with potential future impact is important for high priority areas lacking a strong evidence base. In guidelines with previous scheduled updates, transition to a more reactive ‘trigger-based’ approach can be both more efficient and productive, while maintaining currency of recommendations through continuous surveillance. Determining when to transition between living and standard approaches to maintaining a guideline is dependent on multiple factors, including intelligence from the health and social care system, ongoing research and government policy. Use of NICE COVID-19 content internationally Our COVID-19 rapid guidelines and evidence summaries are exempt from our overseas reuse application, licence and fee. This means you can: adopt the guidelines for your own healthcare setting adapt the guidelines by combining them with your own local content translate the resultant outputs. When using content from our COVID-19 rapid guidelines and evidence summaries you must: make all your outputs reusing NICE content freely available to others acknowledge the use of NICE content, and link to the source content on our website only use the NICE logo if the original NICE guidance publication is used in its entirety without including additional content tell us how our content has been used by emailing reuseofcontent@nice.org.uk , to support the evaluation and development of our guidance. We cannot accept responsibility or liability for the use of our content in third party outputs. Further information on reuse of content is available on the NICE website.