NICE vs SIGN: Management of Motor Neurone Disease (2025)
This guide provides a comparative overview of the National Institute for Health and Care Excellence (NICE) NG42 and the Scottish Intercollegiate Guidelines Network (SIGN) 154 guidelines for the management of Motor Neurone Disease (MND). Both guidelines aim to standardise and improve care, but they differ in structure, emphasis, and some specific recommendations. This comparison is intended to help clinicians across the UK understand the key alignments and variations to inform their practice.
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Diagnosis and Assessment
The diagnostic pathway is a critical area where both guidelines emphasise the need for speed and accuracy to reduce patient anxiety.
NICE NG42
- Referral: Recommends urgent referral (within 4 weeks) to a specialist MND clinic for anyone with suspected MND.
- Diagnostic Process: Stresses that the diagnosis should be made by a consultant neurologist with expertise in MND, based on the El Escorial criteria.
- Breaking the News: Provides specific guidance on how and where to communicate the diagnosis, ideally in person with a key support person present, with immediate follow-up from the specialist MND team.
SIGN 154
- Referral: Similarly advises prompt referral to a neurologist for suspected MND.
- Diagnostic Process: Also endorses the El Escorial criteria and diagnosis by a neurologist.
- Key Difference in Emphasis: SIGN places a stronger emphasis on the role of neurophysiology (electromyography) in supporting the diagnosis, reflecting the expertise within Scottish neurophysiology services.
Practical Takeaway: The core diagnostic principle is aligned. The main difference is SIGN's more pronounced focus on neurophysiological testing as an integral part of the diagnostic workup.
Treatment and Management
Both guidelines advocate for a multidisciplinary team (MDT) approach as the cornerstone of MND care.
Disease-Modifying Therapy
Riluzole: Both NICE and SIGN recommend offering Riluzole to people with amyotrophic lateral sclerosis (ALS). NICE provides a more detailed cost-effectiveness analysis, while SIGN's recommendation is based on the clinical evidence of modestly prolonged survival.
Multidisciplinary Care
- NICE: Provides an extensive, detailed list of the core MDT members and their specific responsibilities (e.g., neurologist, specialist nurse, physiotherapist, occupational therapist, speech and language therapist, dietitian, respiratory physician, palliative care). It strongly emphasises coordinated care through a designated care coordinator.
- SIGN: Also strongly advocates for MDT care but presents its recommendations in a more concise format. It integrates MDT actions within the flow of the disease progression, linking interventions to specific symptoms and stages.
Symptom Management
- Respiratory Management: Both recommend regular respiratory assessment (e.g., using sniff nasal inspiratory pressure). For non-invasive ventilation (NIV), NICE states it "should be offered" to patients with respiratory symptoms or significant orthopnoea, while SIGN uses the stronger "should be used" for those with symptomatic respiratory muscle weakness, considering it a life-prolonging intervention.
- Nutritional Support: Both guidelines recommend proactive nutritional assessment and discussion of percutaneous endoscopic gastrostomy (PEG). NICE specifies discussing PEG before forced vital capacity (FVC) falls below 50%, while SIGN suggests considering it if there is significant dysphagia or weight loss (>5% in one month).
Practical Takeaway: NICE offers a more structured, team-member-centric blueprint for MDT care. SIGN's approach is equally robust but is often integrated into a symptom-led management pathway. The recommendations for Riluzole, NIV, and PEG are consistent in practice.
Special Situations
Cognitive Impairment
- NICE: Includes specific recommendations on assessing and managing cognitive and behavioural change, recognising the frontotemporal dementia (FTD) spectrum. It advises on how to support patients and families when these symptoms are present.
- SIGN: Also addresses cognitive impairment but in less procedural detail than NICE, focusing on the recognition and its impact on care decisions.
End-of-Life Care
- Both guidelines emphasise the importance of integrated palliative care from diagnosis onwards and advance care planning.
- Key Difference: NICE provides very detailed guidance on managing symptoms at the end of life, including specific pharmacological recommendations for respiratory secretions (e.g., glycopyrronium bromide) and breathlessness. SIGN's guidance on terminal care is more general, referring clinicians to broader palliative care principles.
Practical Takeaway: NICE provides more granular, prescriptive guidance for managing complex symptoms in cognitive impairment and end-of-life care, which can be particularly useful for non-specialist clinicians.
Practical Clinical Flow
NICE Pathway
- Structure: Linear and comprehensive. The guideline is accompanied by a visual "NICE Pathway" which maps the entire patient journey from suspicion and diagnosis through to end-of-life care, with clear decision points.
- Focus: Strong on process, coordination, and ensuring all aspects of care are covered by the appropriate professional at the right time.
SIGN Pathway
- Structure: More problem-oriented. The guideline is organised around key clinical decision points (e.g., management of sialorrhea, management of respiratory failure) with flowcharts for each.
- Focus: Excellent for quick reference when managing a specific symptom or complication, as it presents evidence-based options in a concise, algorithmic format.
Practical Takeaway: For a comprehensive overview of the entire care pathway, the NICE structure is highly detailed. For rapid consultation on a specific clinical problem (e.g., "How do I manage excessive saliva?"), the SIGN flowcharts are exceptionally practical.
Frequently Asked Questions (FAQs)
1. Which guideline should I follow if I practice in Scotland or England?
Answer: Clinicians in Scotland are expected to base their practice on SIGN guidelines, while those in England and Wales on NICE. However, the core principles are very similar. The key is to be familiar with your national guideline and aware of the other to understand minor variations in emphasis, which may be relevant for cross-border patients or audit purposes.
2. Is there a difference in the recommendation for Riluzole?
Answer: No. Both guidelines recommend offering Riluzole to patients with ALS. The evidence base is identical.
3. How do the guidelines approach non-invasive ventilation (NIV)?
Answer: Both strongly recommend NIV for symptomatic respiratory weakness. The wording differs slightly ("offered" vs "used"), but the clinical intent is the same: to provide NIV as a standard of care for eligible patients to improve quality of life and survival.
4. Which guideline is more useful for a GP or community clinician?
Answer: NICE may be more helpful due to its highly structured and explanatory nature, providing clear directions on roles, communication, and coordination with the specialist MDT. SIGN's symptom-based flowcharts are also very useful for managing specific issues in the community.
5. Do the guidelines differ on timing for gastrostomy (PEG) insertion?
Answer: The principles are aligned: discuss early, before respiratory decline complicates the procedure. NICE gives a specific FVC threshold (<50%), while SIGN uses clinical markers (dysphagia, weight loss). In practice, the decision is individualised, combining both approaches.
Source Links
- NICE Guideline NG42 (Last updated February 2025): Motor neurone disease: assessment and management
- SIGN Guideline 154 (Published 2025): Management of Motor Neurone Disease
- NICE Pathway: Visual overview of the NICE MND guideline