Overview of 2018 surveillance methods
NICE's surveillance team checked whether recommendations in multiple sclerosis in adults: management (NICE guideline CG186) remain up to date.
The surveillance process consisted of:
Initial feedback from topic experts via a questionnaire.
Literature searches to identify relevant evidence.
Assessing the new evidence against current recommendations and deciding whether or not to update sections of the guideline, or the whole guideline.
Consulting on the decision with stakeholders (this document).
After consultation on the decision we will consider the comments received and make any necessary changes to the decision. We will then publish the final surveillance report containing the decision, the summary of the evidence used to reach the decision, and responses to comments received in consultation.
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. The search strategy consisted of a main search designed to identify systematic reviews published between 4 February 2014 and 13 June 2018 relevant to the whole guideline; and to ensure that recently published evidence that may not be included in systematic reviews was captured. We also included randomised controlled trials (RCTs) published between 1 January 2017 and 13 June 2018 in the main search. In addition, focused searches looked for:
cost-effectiveness evidence on Sativex in the treatment of spasticity and fampridine in the treatment of lack of mobility in people with MS (published between 4 February 2014 and 13 June 2018)
systematic reviews, RCTs and qualitative research on the impact of MS nurses on the healthcare experiences of people with MS (published between 4 February 2014 and 13 June 2018).
We found 79 studies across the 3 searches.
We also included:
Three studies identified through initial intelligence gathering.
From all sources, we considered 82 studies to be relevant to the guideline.
The standard surveillance review process of using RCTs, full economic evaluations and systematic reviews was used for this search. RCTs were only included if they assessed the effectiveness of pharmacological interventions in the management of symptoms associated with MS. An addition to the standard process was that qualitative studies addressing the perspectives and experiences of healthcare professionals and people with MS of UK healthcare services were also included.
We checked for relevant ongoing research. Of the ongoing studies identified, 6 were assessed as having the potential to change recommendations. We plan to regularly check whether these studies have published results, and evaluate as quickly as possible, any impact of the results on current recommendations. These studies are:
We sent questionnaires to 8 topic experts and received 2 responses. The topic experts either:
participated in the guideline committee who developed the guideline or
were recruited to the NICE Centre for Guidelines Expert Advisers Panel to represent their specialty.
One topic expert said that the guideline should be updated. They noted that there is ongoing research looking at the added value of MS nurses, however no reference was provided. They also expressed concern that the current recommendations function as a list for managing symptoms rather than reflecting a 'rehabilitation approach' and therefore we are advising that a more integrated, patient-centred rehabilitation approach addressing multiple aspects of care is considered when NICE guideline CG186 is updated.
Feedback from the NICE implementation team highlighted that stakeholders have reported implementation challenges in the following areas:
improving the understanding of relapse symptoms in people with MS
ensuring people with MS are aware that they should contact an MS specialist nurse rather than their GP when they think they have had a relapse
the accessibility and availability of specialist MS nurses.
Evidence was identified concerning the patient experience and the barriers faced by people with MS in accessing services and in receiving healthcare that meets their needs. The evidence indicates that there is a problem with the implementation of person-centred care and in accessing services that meet the needs of people with MS. While there appear to be issues with the implementation of recommendations in recommendation 1.2 on providing information and support and recommendation 1.3 on the coordination of care, the evidence does not indicate that the recommendations themselves are incorrect or require updating. The current recommendations highlight the importance of providing information and support at the time of diagnosis, that the care for people with MS should involve a coordinated multidisciplinary approach with professionals who have expertise in MS (including MS nurses) and that people with MS should be offered a single point of contact to coordinate care and help them access services.
We considered all other correspondence received since the guideline was published. We received external queries on whether cannabinoids (Sativex) should be recommended for managing spasticity in MS; a request for the guideline to recommend access to an MS specialist nurse for every individual with MS; and a request to look into guidance on neuromyelitis optica.
Evidence concerning all areas was included in the search strategy for this surveillance review:
On the basis of the identified evidence it is recommended that the cost-effectiveness of Sativex be re-assessed as part of the update for NICE guideline CG186.
We did not find any publicly accessible peer-reviewed published evidence that supports recommending access to an MS specialist nurse for every individual with MS. What appears to be key is the provision of support during diagnosis, continuity of care and patient-centred responsive care from people with expertise in MS.
While evidence was identified concerning the diagnosis of neuromyelitis optica, this provided very specific details concerning diagnostic measurements, which are beyond the level of detail provided for diagnosing MS within NICE guideline CG186 and is therefore deemed unsuitable as an area for update of the multiple sclerosis in adults guideline. It is also noted that other guidance exists that provides diagnostics information.
Stakeholders are consulted on all surveillance decisions except if the whole guideline will be updated and replaced. Because this surveillance decision was to update part of the guideline, we consulted on the decision.
Overall, 15 stakeholders commented. Stakeholders represented industry, professional bodies, Foundation Trusts and charities. Ten stakeholders agreed with the decision; 3 noted that they had no comments on the proposals, this included the Department of Health and Social Care and NHS England; 1 responded 'yes and no' to the proposal and 1 stakeholder responded 'no'. None of the stakeholders disagreed with the decision to update the guideline in relation to MS symptom management and rehabilitation, but the majority felt that other areas of the guideline should also be the focus of an update. Areas that stakeholders thought should be updated included:
The impact of Diagnosis of multiple sclerosis: 2017 revisions of the McDonald criteria on recommendations concerning the diagnosis and classification of MS and the information provided to patients when diagnosed. This feedback has informed the update proposal, with these areas recommended as a focus of the update of NICE guideline CG186.
That follow-up MRIs should be conducted at least annually in patients with MS, and that this detail should be added to recommendation 1.6 on comprehensive review. During the planned update of NICE guideline CG186 any implications on the rest of the guideline recommendations from changes in diagnostic criteria will be considered. However, the review of the McDonald criteria states that 'a provisional disease course should be speciﬁed as soon as the multiple sclerosis diagnosis is made, and periodically re-evaluated based on accumulated information.' Recommendation 1.6 is in line with this guidance as it highlights the need to review MS disease course and relapse and recommends referring any issues identified during the comprehensive review of the person with MS to members of the MS multidisciplinary team and other appropriate teams so that they can be managed.
Making the role of the MS nurses more prominent in the guideline. While some grey literature and ongoing research was highlighted, no peer-reviewed journal publications were identified.
Areas highlighted that are out of scope or beyond the remit of the guideline included comments requesting that recommendations are made: on disease modifying therapies (DMTs), on the use of cannabinoids for managing pain in people with MS, for children with MS, on digital care plans, and vocational rehabilitation.
See 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.
Feedback form implementation and stakeholders highlighted inequitable access to services for MS.
During surveillance of the guideline we identified the following points in the guideline that should be amended prior to update:
Recommendation 1.4.7 references the NICE public health guideline on smoking cessation services, this has since been replaced by the NICE guideline on stop smoking interventions and services. The recommendation should be updated with the new guideline information.
Recommendation 1.5.18 should be amended with information that would cover concerns about stopping drug use, including abrupt withdrawal of baclofen. The recommendation should be edited to read:
1.5.18 Ensure that the person with MS:
has tried the drug at an optimal dose, or the maximum dose they can tolerate
stops the drug if there is no benefit at the maximum tolerated dose; but note any special precautions required when stopping specific drugs
has their drug treatment reviewed at least annually once the optimal dose has been reached.
Recommendation 1.5.32 should reference the NICE guideline on depression in adults with a chronic physical health problem. The recommendation should be edited to read:
1.5.32 Be aware that anxiety, depression (see the NICE guideline on depression in adults with a chronic physical health problem), difficulty in sleeping and fatigue can impact on cognitive problems. If a person with MS experiences these symptoms and has problems with memory and cognition, offer them an assessment and treatment.
Recommendation 1.6.5 should be amended with reference to the NICE guideline on medicines optimisation. The recommendation should be edited to read:
During surveillance of the guideline we identified that the following point should be amended at update:
Recommendation 1.1.7 references 'the revised 2010 McDonald criteria'. As this was revised again in 2017 the date should be changed in the recommendation to 2017; and the reference in footnote 2 should be changed to Thompson AJ, Banwell BL, Barkhof F et al. (2018) Diagnosis of multiple sclerosis: 2017 revisions of the McDonald criteria. Lancet Neurology 17(2):162-173.
After considering all evidence and other intelligence and the impact on current recommendations, we decided that an update is necessary which will concentrate on diagnosis, pharmacological management and non-pharmacological management of symptoms in people with MS.
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