How can we translate population research into practice to prevent avoidable death in epilepsy: a road-map for the UK
[Part 3: Challenges; Ridsdale L]
The UK SUDEP Research Initiative is a collaboration between SUDEP Action and a team of researchers at King’s College London. It commissioned a pilot study to analyze data for trends in mortality in a very large general practice population (Ridsdale et al., 2011). The UK General Practice Research Database (GPRD), now known as Clinical Practice Research Datalink (CPRD) currently contains information from 14 million patient records. From 2004 onwards, it includes a register of people with a diagnosis of epilepsy and on antiepileptic medication.
The group studied a cohort of people with epilepsy between 1993 and 2007. Research subjects included anyone diagnosed with epilepsy and prescribed antiepileptic medication. The study described changes in the incidence, prevalence and mortality of epilepsy. Office for National Statistics data on deaths was also used to establish trends in mortality where epilepsy was coded as an underlying cause. A nested case-control study compared subjects with epilepsy who died with those who did not. We aimed to describe not only epilepsy incidence, prevalence, and mortality, but also risk factors for death in epilepsy.
The data suggested prevalence of epilepsy increased from 9 per 1000 in 1993 to 12 per 1000 in 2007. Deaths in epilepsy rose by 31% in males and 39% in females between 1993 and 2005 at a time when mortality from all causes in the general population declined. Patients who had alcohol problems were at almost three-fold increased risk, and risk in patients who had not collected their most recent anticonvulsant prescription for between 90 and 182 days was nearly doubled. Having ‘a history of injury’ during the previous year increased risk by 40%, and having treated depression increased risk by about the same amount. Patients who had been seizure-free in the previous 12 months had a 22% reduced risk of dying.
We additionally published findings using the same database on trends in antiepileptic drug utilization in UK primary care (Nicholas et al., 2012) and on fracture risk with use of liver enzyme inducing anti-epilepsy drugs in people with active epilepsy (Nicholas et al., 2013).
From 2004-14 general practitioners were additionally remunerated for reporting on performance indicators for managing epilepsy, particularly registration of people with epilepsy, and on seizure control in the prior year. From 2014 onwards, GPs will continue to be remunerated for keeping a register of people with epilepsy, but will no longer be remunerated for reviewing people with epilepsy annually. The policy change was linked to a shortage of capacity in primary care, and a need to re-target remuneration for outcomes. Identifying bundles of risks for other conditions, like cardiovascular disease and diabetes will, however, remain a priority, which is highly remunerated.
In the future we hope that general practitioner (GP) performance indicators will be linked to identifying epilepsy mortality risks indicators. To make this possible we wish to continue our research to develop a risk assessment tool which can inform management in the community. We also need to identify what makes policy-makers and clinicians prioritize, fund and target some conditions and their risk factors. Death associated with avoidable risks from heart disease and stroke, has been targeted in UK primary care, with a significant reduction in mortality. Government strategy also targets risk identification for cancer in primary care. Cervical carcinoma accounts for a similar number of deaths each year as epilepsy (764 versus 728 in 2000). The government estimates it spends £175 million per annum on the identification of those at risk from cervical cancer in primary care, referral for monitoring to secondary care, and surgical intervention. GPs can be the first line in prevention of avoidable death when risks can be identified, prioritized and funded like this.
A European collaboration, AMIEHS 2011, has set up criteria to identify avoidable mortality and compare outcomes across Europe. Cervical cancer is included, but epilepsy is not. Parkinson’s Disease is included although the death rate (394 in 2000) is lower than that of cervical cancer and epilepsy. The reason is that the criteria for inclusion are that death rates must be over 100 per annum, and have declined in one country by 30% (Plug et al., 2011). Epilepsy death rates are much higher than 100. The challenge is for one country or region to develop and evaluate interventions to reduce epilepsy mortality by 30%. As with heart disease, stroke and cancer, identification needs to be universal to include all those at risk. In the UK this universal identification is only possible in primary care. In a recent study in one region, less than 20% of those who died had seen by specialists in the prior year (Shankar et al., 2013). Other countries, like Sweden, provide universal, continuing specialist care for people with epilepsy. In this context specialists are taking the lead on identifying risk, with the aim of preventing avoidable death.
Risks of death in epilepsy, as in other conditions, are likely to be many, and to require step-up care which is tailored specifically to each risk. In the UK this will require GPs to monitor, manage and triage patients, where necessary, to appropriate community or secondary care teams. People who do not collect their prescriptions can be identified and contacted directly, with reminders in primary care. People with substance abuse can be referred to specific locally commissioned addiction services. An episode of injury linked to seizure might be identified in primary care, or in an Emergency Department. This could trigger referral to an epilepsy nurse specialist for specific and broad-ranging risk-prevention advice (Noble et al., 2014).
Identifying depression and actively treating it is likely to be vital in maintaining seizure management as well as preventing avoidable death (Fazel et al., 2013). A three stage community cohort study found that people with epilepsy, who report depression symtoms subsequently report poorer seizure control, and vice-versa (Thapar et al., 2009). Depressed people with epilepsy are less likely to adhere to their medications (Ettinger et al., 2014). This non-adherence is likely to be an important link between depression and poor epilepsy control. GPs already screen for depression in other conditions. This could be extended to epilepsy. Antidepressant medications are indicated. The UK also has an Improving Access to Psychological Therapies programme responsible for delivering Cognitive Behaviour Therapy in all localities. In the context of a vicious circle of risk associated with co-morbidity from epilepsy and depression, identification and management of depression should be a priority.
Risk-assessment tools have now been developed for many conditions in primary care, including cancers (Hamilton et al., 2013). We believe that such a tool can and should be developed, and piloted for all people with epilepsy in general practice, with input from users. Barriers and facilitators need to be described and overcome. GPs have lacked confidence in managing neurology problems, including common ones like epilepsy (Thapar et al., 1998). Compared to other specialists in the UK, like diabetologists and psychiatrists, neurologists have done relatively little outreach team-working at the interface with the community. This is necessary to support GPs in managing epilepsy (Ridsdale, 2009).
Epilepsy mortality is higher in males, and it is the 10th highest cause of avoidable mortality in males (Wheller et al., 2007). Government strategy is increasingly focused on years of life lost. This raises the profile of epilepsy mortality. Epilepsy-related death occurs at a younger average than in most other conditions (Wheller et al., 2007). Counting years of life lost in addition to standard mortality rates, emphasizes premature death. So epilepsy is the 5th leading cause of avoidable years of life lost in males and 8th in females (Wheeler et al., 2007). Our research aims to translate population evidence into a practical tool which can be used to predict individual risk for everyone with epilepsy in general practice. We have described barriers to this, both professional and economic, and examples of preventive strategies developed for other conditions. Here we describe a potential map of the way forward in the UK for translating research into practice.
Professor of Neurology and General Practice
King’s College London, UK
Updated May 2016; Original Dec 2014
How to cite:
Ridsdale L. How can we translate population research into practice to prevent avoidable death in epilepsy: a road-map for the UK. 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.
Ettinger AB, Good MB, Manjunath R, Faught RE, Bancroft T. The relationship of depression to antiepileptic drug adherence and quality of life in epilepsy. Epilepsy Behav 2014;36:138-43.
Fazel S, Wolf A, Långström N, Newton CR, Lichtenstein P. Premature mortality in epilepsy and the role of psychiatric comorbidity: a total population study. The Lancet 2013;382(9905):1646-54.
Hamilton W, Green T, Martins T, Elliott K, Rubin G, Macleod U. Evaluation of risk assessment tools for suspected cancer in general practice: a cohort study. Brit J Gen Pract 2013;63(606):e30-e36
Nicholas JM, Ridsdale L, Richardson MP, Ashworth M, Gulliford MC. Trends in antiepileptic drug utilisation in UK primary care 1993–2008: cohort study using the general practice research database. Seizure 2012;21(6):466-70.
Nicholas JM, Ridsdale L, Richardson MP, Grieve AP, Gulliford MC. Fracture risk with use of liver enzyme inducing antiepileptic drugs in people with active epilepsy: cohort study using the general practice research database. Seizure 2013;22(1):37-42.
Noble AJ, McCrone P, Seed PT, Goldstein LH, Ridsdale L. Clinical-and cost-effectiveness of a nurse led self-management intervention to reduce emergency visits by people with epilepsy. PloS One 2014;9(3):e90789.
Plug I, Hoffmann R, Mackenbach J. editors. Final Report. Avoidable mortality In the European Union: towards better indicators for the effectiveness of health systems. AMIEHS. Rotterdam: Erasmus Medical Center Rotterdam; 2011.
Ridsdale L. No more neurophobia: welcome neurology in general practice. Brit J Gen Pract 2009;59(565):567-69.
Ridsdale, L. Avoiding premature death in epilepsy: General practice is the place to start, and much can be done. BMJ 2015;350. 10.1136/bmj.h718.
Ridsdale L, Charlton J, Ashworth M, Richardson M, Gulliford M. Epilepsy mortality and risk factors for death in epilepsy: a population-based study. Brit J Gen Pract 2011;61(586):e271-e8.
Shankar R, Cox D, Jalihal V, Brown S, Hanna J, McLean B. Sudden unexpected death in epilepsy (SUDEP): development of a safety checklist. Seizure Eur J Epilep 2013;22(10):812-17.
Thapar AK, Kerr M, Harold G. Stress, anxiety, depression, and epilepsy: Investigating the relationship between psychological factors and seizures. Epilepsy Behav 2009;14(1):134-40.
Thapar AK, Stott NCH, Richens A, Kerr M. Attitudes of GPs to the care of people with epilepsy. Fam Pract 1998;15(5):437-42.
Wheller L, Baker A, Griffiths C, Rooney C. Trends in avoidable mortality in England and Wales, 1993-2005. Health Stat Qtly 2007;34:6-25.
Benjamin était un petit garçon épileptique traité par Dépakine depuis environs 3 ans. Il a fait 5 crises d'épilepsie dont la 4ème était très profonde et la 5ème mortelle. Il nous a quitté à 5 ans et demi...
Our precious Jordan, age 15, lived a short but very fulfilling life. In her resume, she describes herself as, 'an enthusiastic, responsible and eager person who loves sports and taking on new challenges...