Epilepsy and Insurance in the UK: An exploratory survey of the experiences of people with epilepsy

Transcription

1 Epilepsy and Insurance in the UK: An exploratory survey of the experiences of people with epilepsy Kate Jacoby, BSc 1 Ann Jacoby, PhD 2 On behalf of The 3 rd IBE Commission for Epilepsy Risks and Insurability 3 1 Department of Primary Care, University of Liverpool 2 Department of Public Health, University of Liverpool 3 3rd Commission Members are: Dr Ann Berg, Professor Ann Jacoby, Ms Rosemary Panelli, Professor Mike Wadsworth. Address for correspondence: Professor Ann Jacoby Department of Public Health University of Liverpool Whelan Building The Quadrangle Brownlow Hill Liverpool L69 3GB Tel: Fax: ajacoby@liv.ac.uk Keywords: Epilepsy; Insurance; Risk; Quality of Life.

2 ABSTRACT We investigated problems in obtaining insurance as reported by people with epilepsy who were members of a major UK patient organisation. Information was collected via questionnaires mailed to a random sample of the membership; of whom 347 replied. Overall, 62% of respondents reported experiencing a problem obtaining insurance cover (either increased premiums, restricted cover or outright refusal). Thirty-six percent of respondents reported having been refused one or more types of insurance on the grounds of their epilepsy. Though the low response rate to the study represents an important source of bias, extrapolation from our figures suggests a problem prevalence rate of at least 10%. Adoption of an evidence-based and standardised approach to informing assessments of risk is vital if insurance companies are to provide fair and reasonable terms for insurance cover to their clients with epilepsy. 2

3 BACKGROUND In recent decades, clinical and therapeutic developments have allowed for significant improvements in seizure control and long-term prognosis for people diagnosed with epilepsy. Data from large-scale community based studies show that up to 80% of patients attain prolonged seizure remission 1-3, and approximately 60% remain seizure-free following treatment withdrawal 4. These positive outcomes allow a large proportion of people with epilepsy to resume a normal life ; in that their routine life risks are not elevated above those of the general population 5-9. Nonetheless, the quality of life of people with epilepsy may remain limited 10. It is well documented that people with epilepsy can face both formal and informal discrimination in spheres as diverse as education, employment, driving and insurance 11,12. For example, in many countries formal legislation restricts, often considerably, the driving rights of those with epilepsy: yet the evidence supporting the legislation has been relatively scarce 13,14. Similarly, a diagnosis of epilepsy may result in limited employment prospects; sometimes for legitimate health and safety reasons, but sometimes due to informal discrimination and stigma on the part of employers, other employees and the general public 12, Unfortunately for people with epilepsy, Beaussart 19 concludes that restrictive legislation may be based upon outdated information often consisting of subjective impressions rather than quantifiable data (p.49). Insurance is one sphere of life where people with epilepsy can face difficulties 20. Insurance companies may be reluctant to provide insurance cover due to a prevailing view that people with epilepsy as a group have an elevated risk of accidents, illnesses and death 21. The UK commercial insurance system rests upon the principle of mutuality or equity. According to this principle, relevant risks are assessed and premiums are adjusted to reflect the risk each policyholder poses to the insurance fund. Insurance based on the principle of mutuality discriminates against highrisk individuals because, in order to ensure that the fund is sufficient to cover all probable claims, those individuals considered to be high-risk (e.g. people with epilepsy) may be refused insurance cover or asked to pay increased premiums 22. The Association of British Insurers (ABI) 23 explains that, in a commercial system, insurance companies must be able to adjust premiums according to risk. Not to do so would be to discriminate against low-risk individuals, who would simply seek insurance elsewhere. Unfortunately however, over-exaggeration of risks to be on the safe side appears to result in some people with epilepsy being saddled with heavier burdens than is really necessary 24, thus further compromising their quality of life. Under the terms of the UK Disability Discrimination Act 1995, there are certain circumstances under which insurers must be allowed to discriminate between disabled and non-disabled people. However, they must be able to justify any differentiation with reference to information or data relevant to the assessment of the risk to be insured and from a source upon which it is 3

4 reasonable to rely 23. Due to the variety of potential risks and the paucity of data available about some conditions, insurers are allowed to draw their information from various sources: actuarial or statistical data, medical research information, or individual medical reports. Unfortunately, this means that there is little control over the standard of data relied upon. According to the International Bureau for Epilepsy (IBE), 20 ), the insurance industry view that people with epilepsy are a high-risk group has remained unchallenged due to the absence of reliable data documenting the actual everyday risks for people with epilepsy. Assessments of the data drawn upon by the industry have included criticisms of its anecdotal nature; the highly selected (higher risk) study groups; and the treatment of epilepsy as a homogeneous condition, whereby all affected individuals are seen to constitute the same risk 25,26. By way of illustrating this problem, Cornaggia 26 assessed insurance companies knowledge of different types of epilepsy, asking them to provide quotes for people with epilepsy of varying severity. Tellingly, insurance companies required higher premiums from people with better prognoses. For these reasons, the 1 st IBE Commission in Epilepsy Risks and Insurability sought to establish a comprehensive evidence-base accurately estimating the everyday life risks of people with epilepsy. To this end, a large-scale prospective study was conducted over three years in nine European countries, and involving 951 people with epilepsy and 909 matched controls 8,9. Overall morbidity and accident risk were shown to be higher for people with epilepsy than for their matched controls. However, most of the illnesses and accidents reported were trivial (with the exception of concussion, which was a common complication of seizures). Seizure frequency was associated with an increased risk for both illness and accidents; and there was some evidence that taking AEDs also contributed to an increased accident rate, possibly reflecting impaired levels of attention. Thus the survey established that, for people with epilepsy, certain risks are higher than in the general population; but only in specific subgroups or under specific circumstances,. Its authors concluded that, patients with epilepsy under satisfactory pharmacologic control are not at any significantly higher risk of illnesses and accidents than is the general population. Recent reviews of mortality in people with epilepsy have shown that epilepsy carries a risk of mortality between two and three times larger than that of the general population. However, as for illness and accidents, this risk is not uniform across all people with epilepsy. In a recent metaanalysis, Shackleton et al 30 showed that the source population (ie. the setting from which patients were recruited) for studies of mortality risk in epilepsy explained half the variation in between-study relative risks. The mortality risk is highest for people with remote symptomatic epilepsy; while people with idiopathic or cryptogenic epilepsy do not, in the main, carry a significantly increased risk. 31 Sander and Bell 28 conclude that this is because epilepsy is a symptom of a range of conditions for each of which the risks differ. Deaths from specific causes 4

5 are more common in some epilepsy sub-groups than others. For example, sudden unexpected death, while much commoner in people with epilepsy in the community than people without, also appears to be much commoner in people with chronic, intractable epilepsy than in people whose epilepsy is benign and well-controlled. 32 Likewise, suicide rates, while increased for people with epilepsy compared to the general population, are most common among people with chronic epilepsy with psychiatric co-morbidity. 33 Type, frequency and severity of seizures have consistently been shown to be important risk factors for increased mortality overall, as has length of time since diagnosis. 28 Conversely, the mortality risk for people with epilepsy who are seizurefree is no different than for people without epilepsy. As noted earlier, people with epilepsy face restrictions over driving in most countries, though the degree of restriction is highly variable. Berg and Engel 14 note that all policies over driving are limited by the paucity of data on which to base them: what data exists indicates, however, that the risk of driving accidents among people with epilepsy is modest 13,14,34,35 and related to specific factors, including length of seizure-free period, changes in AED therapy, and a history of nonseizure related crashes 34 Drivers with epilepsy who are in compliance with driving restrictions appear to pose only a small risk. 34 It has also been pointed out that compared to the number of driving accidents attributable to other preventable causes such as alcohol, the number that are epilepsy-related is small. 14 In summary, the data reported above do not deny an association between epilepsy and increased risk. However, they clarify that many people with epilepsy represent no greater risk to the insurance fund than a non-epileptic member of the general population. Hopefully, information of this nature can be utilised in line with the principle of mutuality to provide more accurate risk assessments and, consequently, to improve the position of people with epilepsy in regard to obtaining insurance. The accumulating body of increasingly accurate data documents the real insurance risks posed by an individual with epilepsy. In light of this, it seems pertinent to determine the extent to which these data are being utilised by insurance companies; and, consequently, the manner in which people with epilepsy are being treated. Thorbecke 36 conducted a large-scale survey of European insurance companies policies towards people with epilepsy. The results demonstrated that many companies were wary about covering people with epilepsy and consequently took measures to insure against potential losses. It appears that insurance companies did not have, or were not using, accurate risk assessment data a situation deemed by Thorbecke to be very unsatisfactory. Although many offered individual assessments to people with epilepsy, the quality of their assessments was uncertain. As demonstrated by Cornaggia 26, prognoses offered by insurance agents rarely correspond with those offered by clinicians. Hence people with epilepsy 5

6 have been consistently required to pay higher premiums than those without epilepsy, with no recognition of seizure remission or other relevant factors 37. Some companies simply reported excluding people with epilepsy as a group, though the data referred to above refute any basis for such blanket refusals. Despite the potential importance of this topic to people with epilepsy themselves, few studies have actually asked people with epilepsy about their own experiences and feelings on the matter; and, to the authors knowledge, there have been no large-scale surveys. Surveys of insurance company policies do not capture the actual treatment of consumers by these agencies, nor do they explore consumers responses. Moreover, due to possible socially desirable responses by insurance agents, such surveys may underestimate the barriers faced by people with epilepsy. For these reasons, the 3 rd IBE Commission on Epilepsy Risks and Insurability sought to determine, through a survey of a large sample of people with epilepsy, what problems they encounter in trying to obtain insurance. 6

7 METHOD Recruitment: A questionnaire was distributed by post to a random sample of 2000 members of the British Epilepsy Association (BEA, now Epilepsy Action ) in February The majority of registered BEA members are individuals with epilepsy, although some may be members due to their role as carers for people with epilepsy (usually family members). A covering letter asked any such person to pass on the questionnaire to a person with epilepsy. Participants: 368 respondents returned questionnaires, of which 347 were usable (21 were unusable, either because they were returned blank, or completed by individuals who had obtained all their insurance before being diagnosed with epilepsy; response rate of 17%). Questionnaire, administration and analysis: The questionnaire was a structured one containing mainly pre-coded questions, but also some open questions to encourage more detailed and individual responses. Questions were developed by members of the 3 rd IBE Commission for Epilepsy Risks and Insurability (AB, AJ, MW) and with reference to the existing literature. The questionnaire, which bore the logo of the International Bureau for Epilepsy (IBE) was sent out with an accompanying covering letter which briefly explained the purposes and goals of the study, and emphasised participant anonymity. The letter was signed by both the Chief Executive of Epilepsy Action and the IBE Risks Commission Chair (AJ). Pre-paid envelopes were included to encourage response. Under the conditions for accessing the BEA membership database, it was not possible to send out reminders to non-respondents. The data were analysed using SPSS (version 11.0). 7

8 RESULTS Demographic characteristics Of the 347 survey respondents, 49% were male and 51% were female, compared with 39% males and 58% females for the entire BEA membership as recorded on the database (no information was available from the database for the remaining 3%). The modal age category for survey respondents was years (34.8%). The age distribution of respondents was similar to that of the total BEA membership 1. Fifty-three percent were in full- or part-time employment, 5% were unemployed but looking for work, 34% were unemployed and not looking for work (including retired), and 8% were in full time education. Fifty percent of respondents reported being seizure-free in the last year, 19% reported having less than one seizure per month, 14% reported having one or more seizures per month and 17% reported having one or more seizures per week. Current insurance Respondents were provided with a list of six common types of insurance (personal accident, life, health, home, motor and travel) and asked to indicate whether they currently possessed policies for any of these types of insurance. Seventy-one percent reported holding home insurance, 53% held life insurance, 44% possessed motor insurance, 37% currently held travel insurance policies, 27% held personal accident insurance, and 16% held health insurance. Problems obtaining insurance For each of the six types of insurance, respondents were asked whether they had experienced any problems obtaining them (see Table 1). [Table 1 here] Notable proportions of respondents had experienced difficulties in obtaining insurance; most evidently travel, motor and life insurance. Respondents who reported difficulties in obtaining insurance were asked to identify the nature of those problems; specifically, whether they were required to pay an extra premium or were offered only restricted cover. The analysis of difficulties for each type of insurance is presented in Table 2. 1 Twelve percent of survey respondents were aged under 26 years; 77.8% were aged (20.8% aged years, 34.8% aged years, 22.2% aged years); 10.2% were aged 65 or over. This compares with 13.6% of the total EA membership (as recorded in the database) aged under 25 years; 69.3% aged years; and 17.1% aged 61 or over. 8

9 [Table 2 here] Respondents were also asked whether they had ever been refused any type of insurance cover because of their epilepsy. The numbers of respondents who had, at some time, been refused insurance due to their epilepsy ranged from 4 (1%) for home insurance to 63 (19%) for motor insurance. Forty-five (13%) reported being refused travel insurance and 35 (10%) life insurance cover. A total of 36% of the sample had, at some time, been refused one or more types of insurance cover because of epilepsy. Those respondents who had experienced insurance refusal were asked whether they had been given any reason for the rejection; explanations appeared to be much less frequent than refusals (see Figure 1). [Figure 1 here] Unfair treatment by insurance companies Respondents were asked whether in their opinion they had ever been treated unfairly by an insurance company because of having epilepsy; 36% believed that they had been. Their descriptions of such instances were analysed to identify major themes. These themes and illustrative quotations are shown in Box 1. [Box 1 here] Respondents were also asked how they responded to their perceived unfair treatment by the insurance company. Their answers were thematically categorised, as described previously. The category themes, together with illustrative quotations, are presented in Box 2. [Box 2 here] Information requested in applications for insurance For each type of insurance possessed, respondents were asked to recall whether any information about their epilepsy had been required as part of the application procedure. In total, 235 out of 347 (68%) of respondents reported having been asked to provide information about their epilepsy in applications for one or more types of insurance. These 235 respondents were subsequently asked to specify what information had been requested (see Figure 2) [Figure 2 here] 9

10 The question most frequently asked was whether respondents were on medication for their epilepsy. In contrast, individuals were more rarely asked about the type of epilepsy they had, the type of seizures they experienced, or when their seizures occurred. An understandable response to the difficulties reported above would be to withhold information that might lead to discrimination. Hence, respondents were asked whether they had ever decided not to mention their epilepsy in an application to an insurance company and, if so, why. Seventyfour respondents (23%) reported that they had done so. Of these 74 people, 41 (55%) said it was because they did not consider the information relevant, 34 (46%) said it was because they were worried the insurance company would refuse to insure them, 27 (36%) worried that their premiums would be weighted if they disclosed their epilepsy, and 10 (14%) cited some other reason. A further response to seemingly unfair treatment would be to lodge an appeal against the insurance company. Nineteen (6%) respondents had appealed against an insurance company: 8 (42%) of these because the insurance company refused to insure them, 8 (42%) because the premium was so heavily weighted, and 3 (16%) for some other reason. Opinions about obtaining insurance In light of their numerous and varied experiences as insurance service users, respondents were asked to consider how difficult they felt it was for people with epilepsy to obtain insurance, compared to people without epilepsy. Respondents opinions about each insurance type were taken into account only if they had demonstrated direct experience of applying for that insurance (i.e. currently possessed insurance of that type or had reported difficulties applying for it). Overall, 37% of respondents thought that it was no more difficult for people with epilepsy to obtain insurance than for people without. However, there were also significant proportions of respondents whose experience led them to view insurance applications as slightly more difficult (22%), quite a bit more difficult (19%) and much more difficult (22%) for people with epilepsy. There were clear differences in the perceived level of difficulty of obtaining different types of insurance. For example, an overwhelming majority of respondents felt that home insurance was no more difficult to obtain for those with epilepsy, while only small percentages considered it more difficult. Motor insurance, followed by personal accident and health insurance, was considered by the highest percentage of respondents to be much more difficult to obtain. 10

11 DISCUSSION Overall, 62% of respondents in this study reported having experienced a problem (refusal, increased premium or restricted cover) in obtaining insurance cover in one or more areas of insurance; most commonly travel, motor and life insurance. Of particular note was that 36% of respondents reported having been refused one or more types of insurance due to their epilepsy, and many of them had been offered no explanation for this. We recognise that the very low response rate (17%) to the survey represents a potentially important source of response bias. As described above, we used the membership database of the British Epilepsy Association, which has been shown in recent mail-sort exercises to be more than 98% fully postcode accurate - so we can be confident that the addresses to which the questionnaires were sent were valid ones. However, at the time of our survey, BEA did not access the UK postal service returns service, so that we have no means of knowing how many questionnaires were delivered to addresses which were valid but where the named BEA member no longer resided. The 1,653 people who failed to return questionnaires may have done so for a number of different reasons: since the BEA database does not distinguish between members who themselves have epilepsy and members who do not, it may be that some non-responders were people without epilepsy for whom the questionnaire was therefore not relevant; equally, the nonresponders may have been people with epilepsy who had never experienced any insurance problems or, at most, experienced only minor ones - and who therefore did not view the survey topic as important or relevant for them; a third possibility is that they had obtained all their insurance before being diagnosed with epilepsy. Alternatively, their non-responding behaviour may have been determined by the more generic reasons why postal surveys of this kind produce lower response rates than interview surveys survey fatigue, forgetfulness, and so on 38 (which our inability to send reminders meant we were powerless to address). In other recent surveys of BEA members, responses rates have ranged from 20% (surveys on employment issues and use of complementary therapies) to 40% (survey of health care experiences of older people with epilepsy); so our achieved return rate of 17% is in line with the lower of these figures. Assuming, as a best-case scenario, that none of the non-respondents had experienced any problems in obtaining insurance, our survey still suggests a problem prevalence rate of 11% (217/2000). However, it seems unlikely that this would be the case, so that this putative prevalence is likely to be an underestimate. The fact that over 40% of respondents saw obtaining insurance as quite a bit or much more difficult for people with epilepsy is reflective of these findings (and parallels the finding from an earlier BEA survey, in which just over 50% of members reported gaining adequate insurance as problematic to some degree

12 Among the more surprising examples of apparently unfair treatment were problems in obtaining home insurance and problems with insurance for driving. It is difficult to see what justification could be given for rejecting or weighting an application for home insurance on the grounds of the applicant having epilepsy, yet 13 respondents reported that this had happened to them. It is similarly surprising that 63 individuals were refused insurance for driving despite apparently having been deemed fit to drive by the UK Driver and Vehicle Licence Agency (DVLA). There are some situations in which an insurance company can legitimately apply a temporary loading or policy suspension 23. However, the data from these 63 individuals raises questions about how appropriately, and with what supporting information, insurance companies reached the decision to refuse them cover. Sixty-eight percent of respondents reported being asked for information about their epilepsy in connection with an insurance application. One could argue that it would be legitimate for insurance companies to ask all people with epilepsy for information about their condition providing, as specified in the 1995 UK Disability Discrimination Act, such information is relevant. Interestingly, respondents in the current survey were most often asked what, based on our review of the literature on epilepsy risks, might be considered the least relevant item of information; i.e. whether they were currently on antiepileptic medication, which is, at best, a crude measure of seizure status. At the opposite end of the spectrum, less than half of those required to provide information were asked about the type and timing of their seizures both highly relevant to the issue of risk 40,41. Also highly relevant and not consistently asked were questions about current seizure status (seizure frequency and time since the last seizure). Insurance companies cannot make informed assessments of risk, unless these are based on the most appropriate items of information. Failure to do so can result in inconsistent and unfair decisions, as demonstrated in the study by Cornaggia 26. In summary then, this is to our knowledge the first survey to explore systematically the experiences of people with epilepsy in relation to this particular aspect of life quality. More detailed studies would be helpful in further informing debate between the insurance industry, people with epilepsy and their various advocates. The results of the present study highlight the need particularly in light of the marked variations in risk described earlier for the development of an evidence-based and standardised approach to assessing risk in epilepsy; so ensuring that insurance companies provide fair and accurate risk assessments for their clients thus affected. 12

13 Acknowledgments We would like to thank all those members of Epilepsy Action (formerly British Epilepsy Association) for taking the time and trouble to complete and return the questionnaires. We also thank Dr Ann Berg and Professor Mike Wadsworth for their input to the design of the questionnaire and Professor Gus Baker for his helpful comments on the manuscript. 13

14 REFERENCES 1. Annegers JF, Hauser WA, Elveback LR. Remission of seizures and relapse in patients with epilepsy. Epilepsia 1979; 20: Elwes RDC, Johnson AL, Shorvon SD, Reynolds EH. The prognosis for seizure control in newly diagnosed epilepsy. New England Journal of Medicine 1984; 311: Collaborative Group for the Study of Epilepsy. Prognosis of epilepsy in newly referred patients: A multicenter prospective study of the effects of monotherapy on the long-term course of epilepsy. Epilepsia 1992; 33: Medical Research Council Anti-Epileptic Drug Withdrawal Study Group. Randomised study of anti-epileptic drug withdrawal in patients in remission. Lancet 1991; 337: Collings J. Psychosocial well-being and epilepsy: an empirical study. Epilepsia : Jacoby A, Baker GA, Steen N, Potts P, Chadwick DW. The clinical course of epilepsy and its psychosocial correlates: finding from a UK community study. Epilepsia 1996; 37: Baker GA, Jacoby A, Buck D et al. Quality of life of people with epilepsy: a European study. Epilepsia, 1997; 38 (3): Beghi E, Cornaggia C. for the Risk in Epilepsy Study Group. Epilepsy and Everyday Life risks. A case-referent study: rationale, study design and preliminary results. Neuroepidemiology 1997; 16: Beghi E, Cornaggia C, The RESt-1 Group. Morbidity and accidents in patients with epilepsy: results of a European Cohort study. Epilepsia 2002; 43(9): Cornaggia C, Gianetti S. Epilepsy, Risks and Insurance: General Considerations. In: Cornaggia CM, Beghi E, Hauser AW et al. (Eds.), Epilepsy and Risks: A First-Step Evaluation, Heemstede: International Bureau for Epilepsy, Sillanpää, M. Risks of being unfit to work and early retirement. In Cornaggia CM et al. (Eds.) Epilepsy and Risks: A First-Step Evaluation. Heemstede: International Bureau for Epilepsy, Jacoby A. Stigma, epilepsy and quality of life. Epilepsy & Behavior 2002; 3: S10-S Taylor J, Chadwick D, Johnson T. Risk of accidents in drivers with epilepsy. J Neurol Neurosurg Psychiatry 1996; 52: Berg A, Engel J. Restricted driving for people with epilepsy. Neurology 1999; 52: Caveness WF, Gallup GH Jr. A survey of public attitudes toward epilepsy in 1979 with an indication of trends over the past thirty years. Epilepsia 1980; 21: Hicks RA, Hicks MJ. Attitudes of major employers towards the employment of people with epilepsy: a 30 year study. Epilepsia 1991; 32: Baumann RJ, Wilson JF, Weise HJ. Kentuckians attitudes towards children with epilepsy. Epilepsia 1995; 36:

15 18. Jacoby A, Gorry J, Preston C, Baker GA. Public knowledge, private grief: a study of public attitudes to epilepsy in the UK and implications for stigma. Epilepsia, in press. 19. Beaussart M. Seizures at the wheel and their consequences. In: Cornaggia CM, Beghi E, Hauser AW et al. (Eds.) Epilepsy and Risks: A First-Step Evaluation. Heemstede: International Bureau for Epilepsy, International Bureau for Epilepsy Commission on Epilepsy, Risks and Insurance. Report on Workshop on Epilepsy, Risks and Insurance. Epilepsia 1993; 34(4): Beghi E, Cornaggia C. Guest Editorial: Epilepsy, Risks and Insurance. Seizure 1995; 4: Delaney L. When does epilepsy end?, Leeds: British Epilepsy Association, Association of British Insurers Insurance for disabled people: a guide. London: Association of British Insurers, Loeber JN. Foreword. In Cornaggia CM et al. (Eds.) Epilepsy and Risks: A First-Step Evaluation. Heemstede: International Bureau for Epilepsy, Hauser WA. Mortality in people with convulsive disorders and epilepsy. In: Cornaggia et al. (Eds.) Risks in Epilepsy: Questions concerning insurability. Heemstede: International Bureau for Epilepsy, Cornaggia C. Attitudes of insurance companies toward people with epilepsy. In: Cornaggia CM, Beghi E, de Boer H et al. (Eds.), Risks in Epilepsy: Questions concerning insurability, Heemstede: International Bureau for Epilepsy, Tomson T. Mortality in epilepsy. Journal of Neurology 2000; 247(1): Sander JW, Bell GS. Reducing mortality: an important aim in epilepsy management. Journal of Neurology, Neurosurgery and Psychiatry 2002: 75: Jallon P. Mortality in patients with epilepsy. Current Opinion in Neurology 2004; 17: Shackleton DP, Westendorp RGJ, Kasteleijn-Nolst Trenite DGA et al. Survival of patients with epilepsy: an estimate of the mortality risk. Epilepsia 2002: 43(4): Berg A. Risks in epilepsy. To be published on the webpage of the IBE Commission on Epilepsy Risks and Insurance 2004, Annegers JF, Coan SP. SUDEP: overview of definitions and review of incident data. Seizure 1999; 8: Blumer D, Montouris G, Davies K, et al. Suicide in epilepsy: psychopathology, pathogenesis and prevention. Epilepsy and Behaviour 2002; 3: Krauss GL, Krumholz A, Carter RC, Li G, Kaplan P. Risk factors for seizure-related motor vehicle crashes in patients with epilepsy. Neurology 1999; 52: Broek van den M, Beghi E. Accidents in Patients with Epilepsy: types circumstances and complications: a European cohort study. Epilepsia 2004: 45(6):

16 36. Thorbecke R. Private insurance for people with epilepsy in Europe. In: Cornaggia CM et al. (Eds.) Risks in Epilepsy: Questions concerning insurability. Heemstede: International Bureau for Epilepsy, Thorbecke R. Experience of people with epilepsy hoping to buy an insurance policy. In Cornaggia CM et al. (Eds.) Epilepsy and Risks: A First-Step Evaluation. Heemstede: International Bureau for Epilepsy, McColl E, Jacoby A, Thomas L, Soutter J et al. Designing and using patient and staff questionnaires: a review of best practice. Health Technology Assessment 2001: 5(31). 39. Collings J. Survey of experiences and attitudes of people with epilepsy. Leeds: BEA, International Bureau for Epilepsy Commission on Epilepsy Risks and Insurance. Report on 2 nd Workshop on Epilepsy, Risks and Insurance. Epilepsia 2000; 41(1): Buck D, Baker GA, Jacoby A, Smith DF, Chadwick DW. Patients experiences of injury as a result of epilepsy. Epilepsia 1997; 38(4):