Overview of 2019 surveillance methods
NICE's surveillance team checked whether recommendations in coeliac disease (NICE guideline NG20) remain up to date.
The surveillance process consisted of:
A search for new or updated Cochrane reviews.
Examining related NICE guidance and quality standards and NIHR signals.
A search for ongoing research.
Examining the NICE event tracker for relevant ongoing and published events.
Literature searches to identify relevant evidence.
Assessing the new evidence against current recommendations to determine whether or not to update sections of the guideline, or the whole guideline.
Consulting on the proposal with stakeholders.
Considering comments received during consultation and making any necessary changes to the proposal.
For further details about the process and the possible update decisions that are available, see ensuring that published guidelines are current and accurate in developing NICE guidelines: the manual.
We searched for new evidence related to the whole guideline.
We found 54 studies in a search for systematic reviews, randomised controlled trials and observational studies published between 1 December 2014 and 31 August 2019.
We also included 2 studies identified in comments received during consultation on the 2019 surveillance review.
From all sources, we considered 56 studies to be relevant to the guideline.
See appendix A for details of all evidence considered, and references.
We checked for relevant ongoing research; of the ongoing studies identified, 2 were assessed as having the potential to change recommendations. Therefore, we plan to check the publication status regularly and evaluate the impact of the results on current recommendations as quickly as possible. These studies are:
We considered the views of topic experts who were recruited to the NICE Centre for Guidelines Expert Advisers Panel to represent their specialty. For this surveillance review, topic experts completed a questionnaire about developments in evidence, policy and services related to the guideline.
We sent questionnaires to 18 topic experts and received 6 responses.
Overall, 3 topic experts thought that the guideline should be updated and 3 thought that an update was not necessary. The issues that topic experts thought could be addressed in an update covered recognition of coeliac disease in people with coexisting conditions, non-biopsy diagnosis, annual monitoring and the role of the dietitian. See the section on reasons for the decision for further details of these issues.
We considered all other correspondence received since the guideline was published. Issues raised included:
Neurological damage. Feedback was received from a member of the public in February 2016 stating the need to extend the scope of the guideline to include neurological damage, and in response, NICE stated that the area is out of scope and therefore no recommendations were made, but that new evidence will be considered in this area in the next scheduled surveillance review, that is, the current 2019 review. It was also noted that in the public consultation on the draft recommendations of NICE guideline NG20, this was not highlighted by any of the stakeholders. The NICE guideline on suspected neurological conditions cross refers to NICE guideline NG20 to consider serological testing for gluten sensitivity in adults with gradually progressive unsteady gait, in addition to referral for neurological assessment.
Stakeholders are consulted on all surveillance reviews except if the whole guideline will be updated and replaced. Because this surveillance proposal was to not update the guideline, we consulted with stakeholders.
Overall, 11 stakeholders commented, of whom 3 agreed and 8 disagreed with the decision not to update the guideline. Responses were received from national charities, professional bodies, a general practice and an NHS trust.
After reviewing the comments, very few of the references provided by stakeholders were included for further consideration, mostly because the study designs did not match the inclusion criteria for the guideline. Two studies were added as a result of stakeholder consultation, but the findings were consistent with current recommendations.
Stakeholders highlighted several areas where they felt an update was necessary. These included testing for people with irritable bowel syndrome, Down's syndrome and dermatitis herpetiformis; non-biopsy approach to diagnosis in children and adults; annual monitoring for measuring adherence to a gluten-free diet and for scanning for bone fragility; dietary advice and the importance of the dietitian's role in treatment and monitoring. For further details, see the section on reasons for the decision and appendix B for full details of stakeholders' comments and our responses.
See ensuring that published guidelines are current and accurate in developing NICE guidelines: the manual for more details on our consultation processes.
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