This consultation is on the draft Scottish Intercollegiate Guidelines Network (SIGN) evidence-based guideline on the Diagnosis and Management of Epilepsy in Adults which has been developed by a national, multidisciplinary group chaired by Professor Martin Brodie, Clinical and Research Director, University of Glasgow.SIGN ask respondents to review, prior to publication, those sections of the draft guideline which relate to their area of expertise. As an invited expert reviewer the College's input will be credited within the guideline.SIGN was interested primarily in views on the comprehensiveness and accuracy of interpretation of the evidence base supporting the recommendations in the guideline although any comments on the style or presentation were also welcome.Respondents were asked to include key references to support their comments on this evidence-based guideline wherever possible, and list their comments by the guideline section number.
ROYAL COLLEGE OF PHYSICIANS OF EDINBURGH
RESPONSE TO Scottish Intercollegiate Guideline Network (SIGN) on SIGN Guideline on the Diagnosis and Management of Epilepsy in Adults
The Royal College of Physicians of Edinburgh welcomes the opportunity to respond to the Scottish Intercollegiate Guideline Network (SIGN) on this draft updated guideline, and the comments and observations that follow reflect the views of Fellows who are general neurologists.
General Comments
The College acknowledges the work applied to this update and the significant expansion to text in some areas, but is concerned that the resulting 109 page document may be unwieldy and detract from its usefulness. Sections 6, 7 and 8, and much of section 9, are all new and are worthy additions, but very lengthy. Could a further edit to shorten the narrative and simplify the English help?
The expansion of text is concentrated in some areas and leaves us speculating if there is any unintended bias towards the specialist interests of review group members. That said, our own reviewers particularly welcome the section on mortality in epilepsy, especially the detailed consideration of "sudden unexpected death in epilepsy" (SUDEP) which has had both journalistic and legal exposure recently, and to psychiatric co-morbidities and sleep problems. There is now great emphasis given to women's issues, which is understandable, but could this perhaps be in a shorter section on "gender-specific issues" dealing with particular problems experienced either by men or by women?
Specific Comments (by section as requested)
3.2: We welcome the introduction of the new ILAE classification system.
3.2.2: "principal" is spelled incorrectly.
3.2.4: "genetic generalised epilepsy" is an unfamiliar term. Is this is the new term for "idiopathic generalised epilepsy" and, if so, then this should be explained.
3.3.1: The introduction of a section on non-epileptic attack disorders is very important and is useful.
3.4.1: We welcome the emphasis given to EEG as the “gold standard” for diagnosis of non- convulsive status, as it can be missed on general wards.
3.4.3: The comment on the use of "smartphones" by relatives to record attacks is welcome and particularly helpful in grey cases. The availability of video recording capability by many using mobile phones etc should be recognised even if the start of the attack is not captured.
3.4.3: Whilst access to EEG within 24h for suspected non-convulsive status would be nice, it is only available in a very few centres currently (eg not available in Edinburgh).
3.4.4: The final point in this section could be expanded – the diagnostic hit rate for an EEG after an epileptic seizure is highest in the first 24 hours and this should be available in all acute hospitals.
3.7: Is a little unclear. More guidance on which patients should be referred for genetic advice could be useful here.
4.2: The new content on treatment is very good. A section on what to do if the first drug fails would be helpful before moving on to the pharmacoresistent cases.
4.3.1: There is some surprise that vigabatrin is, or could be, still used. We understand there are visual field risks to this treatment and would recommend this section is reviewed.
4.6.2: The comments on accepting a degree of hyponatraemia in patients on AEDs is welcome.
4.6.4: Important to recognise good bone health but more could be offered about what to do in such cases.
4.7: Withdrawal of AEDs should be under the supervision of an epilepsy specialist. Also, the chances of successful withdrawal for some epilepsy is rather low eg JME.
4.8: Advising that "complementary therapy" has no role, and may be harmful, is welcome.
4.9.2: It might be helpful to distinguish non-invasive stimulation, for which the evidence is poor, from invasive brain stimulation, for which there is evidence and use is increasing.
4.10: Should the guideline attempt to offer a single definition, rather than accept the definitions are varied?
4.10.2: which deals with management of refractory seizures in the hospital environment is useful. We suggest that fosphenytoin be discussed as an alternative to phenytoin.
4.12: Helpful section, but should stress that modern antidepressants do not raise the risk of seizures to address under treatment in some patients.
4.14: Is new, and interesting, but would benefit from being more succinct.
4.15: Helpful section but would benefit from the addition of advice regarding the possibility of misdiagnosis of seizures in patients with some behavioural problems and which may merit specialist input.
5.1: "Contraception" section is useful, but could be more succinct.
5.2.1: "Folic Acid": this is a good example of where the length of the section may detract from the message with the document in danger of becoming a review article, rather than a guideline.
5.4: Is very useful. Handling delivery of pregnant patients etc. This is a common question posed to all neurologists.
5.5.1: There is an argument for making this section more robust to ensure the relative risks of stopping AEDs against damage to the foetus or mother of such incidents as tonic clonic convulsion are understood.
5.6: Tick point two: contains a split infinitive.
5.7: "Breastfeeding" is needlessly complex.
Table 6 could be more useful if dosage levels and study sizes were available.
Section 9: Helpful section but could be strengthened by guidance on:
- Timely access to “first fit” clinics.
- Availability of specialist clinics eg paediatric-adult transition, obstetrics or learning disability.
- Access to specialist tertiary services for difficult cases.
- Access to assessment and management of patients with non-epileptic attacks.
- Cross referencing to section 10 in terms of the capacity in outpatient appointments for specialists to communicate with patients and referring clinicians.
Section 10: "Provision of Information" fails to address the one question of particular interest to general neurologists, namely is it necessary to warn all patients with epilepsy regarding the risk of sudden unexpected death in epilepsy ("SUDEP"). An answer to this would be very welcome and so provide a clear steer on this delicate issue, which has received attention in Scottish Courts in recent years.
The list of abbreviations at the end is useful, as is the pre-pregnancy check list.
"Annexe 3" (Screening for psychiatric co-morbidities). Is it absolutely necessary to include this given previous comments about the length of the guideline?