Clinical guidance for the generalist
[Part 3: Challenges; Smithson WH]
The problem is that epilepsy can be really complicated; and of course it isn’t a single condition but a broad range of seizure disorders from the relatively mild and self-limiting to the severe and intractable. As a generalist, I am relieved that people with severe epilepsies are managed by expert neurologists, or neuro-psychiatrists, who have a bewildering array of investigatory tools at their disposal as it is well known that the risk of SUDEP is highest in people with resistant generalized tonic-clonic seizures and certain disabling epilepsy syndromes (Hesdorffer et al., 2011). So, do generalists (family doctors, general physicians, emergency medicine doctors and paediatricians) have any role in reducing the risk of SUDEP?
The answer, of course, is that we have a crucial role in working with people with epilepsy to achieve maximum benefit from whatever treatment modality has been agreed with the specialist, by monitoring the condition and advising re-referral if there has been a change in seizure pattern, seizure frequency or a treatment failure. It is well reported that epilepsy management is suboptimal across the world, with limited access to neurologic services. Access to family medicine is much more available. People with epilepsy consult at least twice as often as the general population (Gaitatzis et al., 2002) giving generalists an opportunity to monitor seizures and treatment, and to check on the need for information.
Epilepsy can be monitored either on an opportunistic basis, when the individual consults for other problems, or as a planned review with epilepsy being the purpose of the consultation. The opportunistic review is necessarily brief, with general questions enquiring about whether the epilepsy seems under control or if it is problematic. The medication review can also be checked to see if prescription ordering suggests good adherence. If any concerns are identified then it is usually best to offer an epilepsy specific appointment in the not too distant future.
Monitoring epilepsy in generalist practice has a different emphasis to the out-patient reviews in neurology clinics and is very much a partnership between patient and professional to come to a shared agreement of how to manage and live with epilepsy. The diagnosis needs to be checked to ensure there is no confusion in the hospital letters and that the individual understands the nature and prognosis of their condition. Seizure control needs to be assessed remembering that self-report may be inaccurate, as there may be penalties if a seizure is disclosed in someone with generally well-controlled seizures and there has been a change in seizure frequency or pattern. Discuss any concerns regarding the medication and if seizures are refractory, check that referral for surgical assessment has been considered. In an open and non-judgemental way, ask how the individual takes the medicine and enquire about any concerns or side effects. Check that information about the risks of epilepsy, including SUDEP, has been provided and sign-post to the excellent Not-For-Profit web sites. Discuss when the next review should be planned and record all the information that has been given.
The majority of people with epilepsy have good seizure control and are considered at ‘low risk’ of SUDEP. However, we know that the way that people choose to take their medicines can vary over time and is dependent on a balance of ‘necessity’ and ‘concerns’ about medicines (Chapman et al., 2014). Not taking the medicines as prescribed can increase the risk of seizures and SUDEP. The clues to this ‘non-adherence’ can be found in the patient’s medication record (Smithson et al., 2012). People take decisions about themselves and their condition on a daily basis, and sometimes a decision not to take antiepileptic drugs is based on incomplete information. Information should be tailored to the individual and take account of the small, but definite, risk of SUDEP (NICE, 2012).
Careful examination of some ‘low risk’ SUDEP cases has highlighted a lack of information about the risks of SUDEP (Duff, 2011). The mechanisms and modifiable factors regarding SUDEP are now more widely known and the progress in an objective approach to the risks of epilepsy has been as a result of the continuing work done, in part, by the many contributors to the ongoing Global Conversation and the increasing resources available for SUDEP research. The continuing longitudinal nature of care in family practice provides an opportunity for a long term therapeutic relationship between patient and professional, where the patient can voice concerns and changes in attitudes and behaviour particularly relating to adherence to medicines.
With non-adherent behaviour being changeable and dynamic it is important to discuss any worries or concerns or new information (correct, or not) that may lead to risky behaviour. Questions like ‘how are you taking your epilepsy medicines at the moment?’ and ‘how many tablets have you missed in the last week?’ can help assess adherence. It must be remembered that non-adherence may be intentional; perhaps because of a concern about taking tablets long term, or feeling that the tablets act as a disease label, simply testing out whether the tablets are still needed, or unintentional as a result of forgetfulness.
By understanding and working with our patients we can help them feel more in control of their lives and decisions about their condition.
Family practice has one other responsibility in supporting bereaved families. SUDEP is an event that is unexpected, is likely to only occur once or twice in the professional lifetime of a general practitioner and so is memorable for all the wrong reasons. Families need support and contact from their GP, which can be greatly appreciated. Families affected by sudden unexpected death may have many questions in response to this traumatic event in their lives. It is important that families are signposted to organisations that have developed services for these families and, if appropriate, refer to local bereavement counselling. SUDEP Action provides a service tailored to the needs of families in the UK, supports families world-wide to report to the Epilepsy Deaths Register and provides information about services in other countries.
W Henry Smithson
Professor of General Practice
University College Cork
National University of Ireland, UK
How to cite:
Smithson WH. Clinical guidance for the generalist. In: Hanna J, Panelli R, Jeffs T, Chapman D, editors. Continuing the global conversation [online]. SUDEP Action, SUDEP Aware & Epilepsy Australia; 2014 [retrieved day/month/year]. Available from: www.sudepglobalconversation.com.
Chapman SCE, Horne R, Chater A, Hukins D, Smithson WH. Patients' perspectives on antiepileptic medication: relationships between beliefs about medicines and adherence among patients with epilepsy in UK primary care. Epilepsy Behav 2014;31(Feb):312-20.
Duff AJM. Determination of Sheriff Alistair Duff, Sheriff of Tayside Central and Fife at Dundee. Inquiry held under Fatal Accidents and Sudden Deaths Inquiry (Scotland) Act 1976 into the deaths of Erin Casey and Christina Fiorre Ilia. 2011.
Gaitatzis A, Purcell B, Carroll K, Sander JWAS, Majeed A. Differences in the use of health services among people with and without epilepsy in the United Kingdom: socio-economic and disease-specific determinants. Epilepsy Research 2002;50(3):233-241.
Hesdorffer DC, Tomson T, Benn E, Sander JW, Nilsson L, Langan Y, et al. Combined analysis of risk factors for SUDEP. Epilepsia 2011;52(6):1150-59.
NICE CG137 [National Institute for Health and Care Excellence (NICE) National Clinical Guideline (CG) 137]. Epilepsies: diagnosis and management. CG137. London: NICE; 2012.
Smithson WH, Hukins D, Colwell B, Mathers N. Developing a method to identify medicines non-adherence in a community sample of adults with epilepsy. Epilepsy Behav 2012;24(1):49-53.
I could talk all day about Erin, telling you how beautiful, clever, kind, caring, popular, fun loving, annoying and special she was. She was due to leave home for university when she was diagnosed...
Kim was 23 years old and was studying for her nursing degree ...had her first and only seizure on Easter Sunday, 2006 ...morning of October 7, 2006 we discovered Kim in the bedroom face down, not moving...