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Epilepsia, 53(10):1820–1828, 2012 doi: 10.1111/j.1528-1167.2012.03586.x

FULL-LENGTH ORIGINAL RESEARCH

Characteristics of people with epilepsy who attend emergency departments: Prospective study of metropolitan hospital attendees *Adam J. Noble, yLaura H. Goldstein, zPaul Seed, xEd Glucksman, and *Leone Ridsdale Departments of *Clinical Neuroscience and yPsychology, Institute of Psychiatry, King’s College London, London, United Kingdom; zDivision of Women’s Health, King’s College London, London, United Kingdom; and xEmergency Department, King’s College Hospital NHS Foundation Trust, London, United Kingdom

SUMMARY Purpose: One fifth of people with established epilepsy attend hospital emergency departments (EDs) and one half are admitted each year. These ED visits are not necessarily required, and unplanned hospitalizations are costly. Reducing avoidable ED visits and admissions is a target in most health services. The development of interventions is, however, challenging. Policymakers lack information about users’ characteristics, factors associated with ED use, as well as quality of care. This study provides this information. Methods: We prospectively recruited patients attending three London EDs for seizures. They completed questionnaires on service use and psychosocial state. Key Findings: Eighty-five patients were recruited. The mean age was 41; 53% were male. The average number of ED attendances in the prior year (mean 3.2; median 2) exceeded that of other ED users and those with most

Epilepsy is a common long-term condition, imposing personal, as well as societal burdens (WHO, 2008). The cost of providing health care to patients with epilepsy is one societal impact (Wiebe et al., 1999). The largest cost is attributed to hospitalizations (Jacoby et al., 1998; Jennum et al., 2011). This is partly explained by 85% of hospitalizations occurring on an emergency basis (Bruce et al., 2004; Holmquist et al., 2006) and that these are particularly expensive (Hughes & McGuire, 2003). Emergency hospitalizations for epilepsy most commonly occur following a hospital emergency department (ED) visit, with 40–60% of visits resulting in admission (Ryan et al., 1998; Kitson et al., 2000; Reuber et al., 2000). Rates Accepted May 21, 2012; Early View publication July 10, 2012. Address correspondence to Dr. Adam J. Noble, Institute of Psychiatry, King’s College London, PO 41, London SE5 8AF, U.K. E-mail: adam.noble@ kcl.ac.uk Wiley Periodicals, Inc. ª 2012 International League Against Epilepsy

chronic conditions. ED use was not homogenous, with some patients attending frequently. Compared to the wider epilepsy population, ED attendees experienced more seizures, anxiety, had lower knowledge of epilepsy and its management and greater perceived epilepsyrelated stigma. In the previous 12 months, most patients’ epilepsy outpatient care was consistent with standard criteria for quality. In descending order, lower knowledge, higher perceived stigma, poorer self-medication management, and seizure frequency were associated with more emergency visits. Significance: People with epilepsy presenting to EDs reattend frequently. Interventions aiming at reduced ED use by this population should address lower knowledge, stigma, suboptimal self-management, and frequent seizures reported by patients. KEY WORDS: Epilepsy, Hospital, Emergency, Stigma, Knowledge, Quality of life.

of hospital readmission for people with epilepsy (PWE) are unusually high (Whiston et al., 2009). Such hospital admissions are most frequent in urban areas with high social deprivation, ethnic diversity, and poor epilepsy control (Shohet et al., 2007; Begley et al., 2009, 2011, QIPP/Right Care 2010). Up to 18% of adults in the United Kingdom with active epilepsy report having attended an ED in the previous year (Hart & Shorvon, 1995; Jacoby et al., 1998; Kitson et al., 2000). Studies from other countries show a similarly high use (Moulin et al., 2003; de Falco et al., 2008; Royl et al., 2010; Casado, 2011). Most presentations (approximately 80%) are by patients with established epilepsy (Ryan et al., 1998; Irving et al., 1999; Reuber et al., 2000). Injury, status epilepticus, and unusual seizure presentations are not leading reasons for presentation (Hart & Shorvon, 1995; Ryan et al., 1998; Huff et al., 2001). Some evidence suggests that PWE attending ED require more proactive support, and that this may reduce attendances (Schull et al.,

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1821 Emergency Visits by People with Epilepsy 1992; Ridsdale, 2009). What additional support is required is not known. The development of interventions is challenging, as policymakers lack detailed information about the characteristics of ED users, their pattern of use, their needs and the factors associated with repeat use of the ED, and whether ambulatory care is up to standard. Although we know ED attendance is related to seizure frequency, the size of association is modest (correlations between 0.2 and 0.3) (Jacoby et al., 1998; Bautista et al., 2008). Seizure type is also not a robust predictor (Begley et al., 2001; Cramer et al., 2004; Kurth et al., 2010). Psychiatric comorbidity (Pugh et al., 2008; Lacey et al., 2009), younger age (Jette et al., 2008), being male (Farhidvash et al., 2009), black and aboriginal ethnicity (Kelvin et al., 2007; Jette et al., 2008; Begley et al., 2009), lower socioeconomic status (Begley et al., 2009, 2011), and adherence to antiepileptic drug (AED) regimen (Davis et al., 2008; Faught et al., 2008) have also been found associated with ED visits. Evidence from the United States suggests that another reason that PWE seek care in the EDs is because they are not fully utilizing outpatient epilepsy services (Farhidvash et al., 2009). The evidence in favor of these predictors is not robust, their independent effect is uncertain, and the generalizability of the evidence is unclear, as many studies were conducted in the United States, which is the only Organization for Economic Cooperation and Development (OECD) country whose health care system is not principally publically funded (Colombo & Tapay, 2004). Cost barriers to medical treatment in the United States result in an unusual pattern of ED use (Docteur et al., 2003). Another limitation is that patients’ epilepsy knowledge and feelings of stigmatization related to epilepsy have not been measured. Living with epilepsy requires patients to adopt behaviors to control seizures and manage the consequences of the condition (e.g., taking medication, and identifying and avoiding or controlling triggers). This requires that patients to have sufficient knowledge of epilepsy and for them to accept their diagnosis and engage with treatment.

Objectives To address four questions: What is the pattern of use of ED by PWE? What are the characteristics of this population? What standard of outpatient epilepsy have they been receiving? What factors are most associated with frequent ED visits?

Methods Recruitment From May 2009 to March 2011, we recruited from the EDs of three London hospitals (King’s Hospital, KCH; St. Thomas’ Hospital, STH; and sity Hospital, Lewisham, UHL). These are inner

patients College UniverLondon

facilities with comparable EDs, each being consultant-led and offering a 24-h service with full resuscitation facilities, and serve 1 million residents in the London boroughs of Southwark, Lambeth, and Lewisham (Department of Health, 2010). The population has high levels of social deprivation, ethnic diversity, and poor epilepsy control (Department of Health, 2010; NHS Information Centre 2010b). Epilepsy prevalence in adults in this population is 0.51% (NHS Information Centre, 2010a). This study forms part of a wider, nonrandomized trial (ISRCTN06469947) comparing the outcome and subsequent service use of PWE who have visited these EDs. Herein we present findings from the baseline assessment of the recruited patients prior to them receiving different treatments. To identify PWE visiting the EDs, an expert panel of emergency medicine and neurology consultants identified those symptoms and diagnoses by which the departments classified attendances that they considered potentially indicative of an epilepsy-related attendance. During the recruitment phase, a research worker (AN) and a neurology consultant (LR) reviewed ED records of patients falling into these categories for eligibility. Patients were eligible if they were ‡18 years old and had a documented diagnosis of epilepsy for ‡1 year. Exclusion occurred if they could not complete questionnaires independently, had a life-threatening or serious comorbidity, or did not reside within the local boroughs. For the purposes of the subsequent trial, we excluded those who had seen an epilepsy nurse specialist (ENS) in the previous year, and those referred to neurology for an outpatient appointment by the ED. Invitation letters were sent to eligible PWE shortly following discharge from the ED. The Joint South London and Maudsley and the Institute of Psychiatry NHS Research Ethics Committee approved the study (08/H0807/86). Informed consent was obtained from participants. Assessment Participants completed validated generic and epilepsyspecific self-report questionnaires (Table S1) (Jarvie et al., 1993; Cramer et al., 2000; Scott-Lennox et al., 2001; Bjelland et al., 2002; DiIorio et al., 2003; Taylor et al., 2011). Information on the characteristics of participants’ epilepsies was extracted from their primary and secondary care medical records. As noted by previous studies (Ryan et al., 1998; Kitson et al., 2000; Reuber et al., 2000), information on the seizures that led to ED attendances was not consistently reported in ED records and is not presented here. Deprivation was estimated by linking patients’ postcodes to the Index of Multiple Deprivation (Department for Communities and Local Government, 2011). The standard of epilepsy care provided to participants in the prior 12 months was compared to three National Institute for Health and Clinical Excellence criteria for good care Epilepsia, 53(10):1820–1828, 2012 doi: 10.1111/j.1528-1167.2012.03586.x

1822 A. J. Noble et al. (Stokes et al., 2004). The first concerns access to specialist services: ‘‘[i]f seizures are not controlled and/or there is diagnostic uncertainty or treatment failure, individuals should be referred to tertiary services…for further assessment’’ (p. 44). The second relates to medical review: ‘‘[a]ll individuals with epilepsy should have a regular structured review…this…should be carried out at least yearly by either a generalist or specialist, depending on how well the epilepsy is controlled…’’ (p. 44). The third concerns prescribed AEDs: ‘‘…individuals should be treated with a single antiepileptic drug…wherever possible’’ (p. 56). The Clinical Standards Advisory Group (Kitson et al., 2000) further recommends: ‘‘Monotherapy should be the rule…in at least 50% of those with established or severe epilepsy’’ (p. 44). Statistical analysis To examine how representative our sample was, the characteristics of our sample were compared to those of the group with established epilepsy who attended the EDs for epilepsy during the recruitment period, but were not recruited. The recruited sample was then compared solely to those persons who were eligible, but who declined participation. Patients’ age, gender, deprivation status, and ethnicity were compared, as was the clinical urgency of their ED presentations (Mackway-Jones, 1997). Because information in ED records is often incomplete, each analysis was restricted to those without missing data. When missing data exceeded 5%, those with and without missing data were compared. Information on the nonrecruited patients’ epilepsy was limited to their ED records, as wider medical records access was not ethically permissible. To examine the recruited and nonrecruited group’s epilepsy and care generally, we extracted information recorded by their primary care practice for the 2009/10 Quality and Outcomes Framework (QOF) (NHS Information Centre 2010b). QOF operates as a means of linking the income of primary care practices to care quality. For epilepsy, practices annually report the: (1) percentage of PWE (aged ‡16) registered on AEDs who were seizure free in the last 12 months (indicator 8); (2) percentage of PWE on AEDs who had a medication review in previous 15 months (indicator 7); and (3) percentage of PWE on AEDs with a record of seizures in previous 15 months (indicator 6). There is variability between practices on these criteria (Ashworth et al., 2007). Descriptive statistics were used to describe ED use, epilepsy care and characteristics of the recruited patients. When data were not normally distributed, the median and interquartile range (IQR) were used to describe central tendency. Mann-Whitney, Kruskal-Wallis, and chi-square tests compared groups. Regression analyses were used to estimate relationships between frequency of ED use and the predictor variables. Coding of the variables is described in Table 2. Unadjusted regression models were first run for each of the variables. Variables significantly associated with ED Epilepsia, 53(10):1820–1828, 2012 doi: 10.1111/j.1528-1167.2012.03586.x

use were then simultaneously entered into multiple regression analysis to identify parsimonious predictors. Overdispersion and exclusion of zero values in ED use meant that zero-truncated negative binomial regression was the appropriate technique. Relative ED use is described in incidence-rate ratios (IRRs), with corresponding 95% confidence intervals (CIs). The likelihood ratio test examined over dispersion and the Wald statistic provided the statistical significance of variables. All p values were two-sided and alpha set at 5%. Analyses were performed using STATA 12 (Stata Corporation, College Station, TX, U.S.A.) and SPSS 17.0 (SPSS, IBM, Armonk, NY, U.S.A.) and STATSDIRECT 2.7.8 (Statsdirect Ltd, Cheshire, United Kingdom).

Results During the recruitment period, 943 persons attended the EDs due to established epilepsy. Of these, 315 were eligible and 85 participants recruited. We found no significant difference in the acceptance rates between ED sites. Reason for exclusion was not living in locality = 352 (56.1%); unable to independently complete questionnaires = 115 (18.2%); serious comorbidity = 83 (13.2%); having consulted an ENS 0.05). Characteristics of PWE attending EDs Seizures All PWE who attended EDs had experienced an epileptic seizure in the previous year. Thirty-nine (46%) had experienced 2–9 seizures and 36 (42%) participants ‡10 in the previous 12 months (Table 2). The median seizure severity for participants who had a seizure in the preceding 4 weeks was 57.5 (IQR = 43.1–72.5).

Figure 1. Histogram of number of reported emergency department attendances in previous 12 months by patients.* *The distribution shows positive skew (+3.40). Twenty-nine percent of participants attended once only. Epilepsia ILAE

Quality of life The epilepsy-specific quality of life (QoL), as represented by the mean (M) Total 10-Item Quality of Life in Epilepsy (QOLIE-10) score, was 26.30 (standard deviation [SD] 7.95). Higher scores on this measure indicate poorer QoL. Patients who had visited an ED on ‡3 occasions in the previous 12 months had poorer QoL (M 28.30, SD 8.7) than those who had attended on two occasions (M 26.04, SD 7.9) or only once (M 24.57, SD 6.9).

prior year was 2 (IQR = 1–4, range 1–25). Thirty-three (39%) had attended only once and 21 (25%) on two occasions. The remaining 31 (36%) had attended on three or more occasions, accounting for 72% of all visits. The median number of visits made by this subgroup was 5 (IQR = 4–7). There was no significant difference between

Psychological distress Twenty-nine participants (34%) had a ‘‘case’’ level of anxiety and/or depression; 28 (33%) had ‘‘case’’ levels of anxiety and 8 (9.4%) had ‘‘case’’ levels of depression. Days since last seizure were not significantly associated with anxiety or depression scores. Epilepsia, 53(10):1820–1828, 2012 doi: 10.1111/j.1528-1167.2012.03586.x

1824 A. J. Noble et al. Table 2. Characteristics of participants and association with frequency of ED use

Factor Age, M (SD) Youngest quartile (18–26) Second quartile (27–42) Third quartile (43–51) Oldest quartile (52–89) Gender Male Female Ethnicity White British Other Social deprivation, Median (IQR) Least-deprived quartile (13.97–24.38) Second quartile (24.39–32.07) Third quartile (32.08–37.62) Most-deprived quartile (37.63–47.46) Epilepsy type Focal Generalized Undefined Seizure type Partial and generalized Generalized only Partial only Unknown Seizures in prior year, median (IQR) Medication Management, median (IQR) Highest management quartile (39–40) Second quartile (37–38) Third quartile (34–36) Lowest management quartile (21–33) Anxiety, median (IQR) Not anxious Borderline Caseness Depression, median (IQR) Not depressed Borderline Caseness Felt Stigma, median (IQR) Least stigmatized quartile (0–0) Second quartile (1–2) Third quartile (3–3) Most stigmatized quartile (4–8) Social knowledge, median (IQR) Most knowledgeable quartile (17–20) Second quartile (16–16) Third quartile (14–15) Least knowledgeable quartile (8–13) Medical knowledge, median (IQR) Most knowledgeable quartile (29–32) Second quartile (27–28) Third quartile (23–26) Least knowledgeable quartile (15–22)

N = 85

Association with ED use

Median (IQR)

IRR (95% CI)

41.12 (16) 23 (27.1%) 21 (24.7%) 20 (23.5%) 21 (24.7%)

2 (1–5) 2 (1–4) 2 (2–5) 1 (1–2.5)

1.00 Reference 1.29 (0.44–3.81) 1.07 (0.43–2.66) 0.42 (0.16–1.12)

45 (52.9%) 40 (47.10%)

2 (1–4.5) 2 (1–4)

1.00 Reference 0.86 (0.39–1.89)

2 (1–4) 2 (1–5)

1.00 Reference 1.36 (0.59–3.10)

1 (1–2.25) 3 (1–6) 2 (1–4) 2 (2–4.5)

1.00 Reference 2.37 (0.54–10.36) 1.12 (0.24–5.33) 1.26 (0.28–5.69)

49 (57.6%) 17 (20.0%) 19 (22.4%)

2 (1–3.5) 2 (1–5) 2 (1–5)

1.00 Reference 1.59 (0.69–3.70) 2.21 (0.89–5.49)

37 (43.5%) 37 (43.5%) 6 (7.1%) 5 (5.9%) 6 (3–10) 36.0 (32.5–38.0) 24 (28.2%) 24 (28.2%) 17 (20.0%) 20 (23.5%) 8.0 (5.5–12) 36 (42.4%) 21 (24.7%) 28 (32.9%) 5.0 (2–7) 66 (77.6%) 11 (12.9%) 8 (9.4%) 2 (0–3) 27 (31.8%) 20 (23.5%) 18 (21.2%) 20 (23.5%) 15 (13–16) 26 (30.6%) 37 (43.5%) 13 (15.3%) 9 (10.6%) 26 (22–28) 26 (30.6%) 24 (28.2%) 18 (21.2%) 17 (20.0%)

2 (1–4) 2 (1–4.5) 2 (1–3.75) 5 (1.5–7) -

1.00 Reference 0.64 (0.27–1.53) 0.54 (0.16–1.87) 2.16 (0.84–5.54) 1.22 (1.08–1.37)

2 (1–3) 1 (1–4.5) 2 (1–2.75) 3 (1–6.75)

1.00 Reference 1.97 (0.49–7.97) 1.01 (0.41–2.49) 2.58 (1.06–6.27)

2 (1–2) 2 (1–5.5) 3 (1–5.75)

1.00 Reference 2.29 (1.16–4.51) 3.67 (1.67–8.09)

2 (1–3) 4 (1–6) 4 (2–13.25)

1.00 Reference 2.45 (1.19–5.03) 5.07 (2.03–12.63)

1 (1–2) 2 (1–2.75) 2 (1–4) 5 (2–7.75)

1.00 Reference 1.64 (0.67–4.02) 1.82 (0.84–3.93) 5.88 (2.62–13.19)

1 (1–3) 1 (1–2.5) 2 (1–3) 4 (1.75–6.25)

1.00 Reference 1.41 (0.26–7.63) 1.07 (0.33–3.44) 3.55 (1.04–12.17)

1 (1–2.5) 2.5 (1–5) 2 (1–2.75) 2 (1–5)

1.00 Reference 2.80 (0.98–8.03) 2.46 (0.59–10.12) 3.46 (1.21–9.88)

51 (60%) 34 (40%) 32.07 (24.31–37.66) 22 (25.9%) 21 (24.7%) 21 (24.7%) 21 (24.7%)

Bold, statistically significant IRR (p < 0.05). IQR, interquartile range; CI, confidence interval; IRR, incidence-rate ratio.

Epilepsia, 53(10):1820–1828, 2012 doi: 10.1111/j.1528-1167.2012.03586.x

ED use

1825 Emergency Visits by People with Epilepsy Felt stigma Fifty-eight participants (68.2%) reported feeling stigmatized because of epilepsy. Epilepsy knowledge Expressed as the mean percent correct, which is standard for this measure, the sample’s scores on the different scales were: Total 70.7 (SD 10.8), Social 68.2 (SD =9.9), and Medical Knowledge 73.4 (SD 11.6). An example of responses is that 24 (28.2%) responded incorrectly in the Social Knowledge scale, stating that it was always necessary to call a doctor or ambulance if a person with epilepsy has a seizure, even if it occurred without complication. Level of epilepsy care being received by PWE who had attended ED Access to tertiary epilepsy services Most participants (n = 68; 80%) considered their main epilepsy carer to be a hospital doctor, rather than a primary care doctor. Forty-three (51%) were being seen in general neurology clinics, 23 (27.1%) epilepsy clinics, and 2 (3%) by neuropsychiatry or neurosurgery services. Frequency of medical review Nearly all participants (n = 82; 97%) had had an epilepsy review in the previous 12 months, with 60 (71%) reporting attendance at a hospital clinic and 72 (85%) in primary care. The median number of outpatient appointments for epilepsy was 4 (IQR = 2–9). Number of AEDs prescribed Fifty-four participants (52%) were taking monotherapy, 38 (45%) polytherapy (median 2; IQR = 2–2.25), and three were not taking AEDs at all. Factors associated with frequency of ED visits Because the dependent variable ED use was overdispersed (M 3.17 < variance 12.89), we adopted a negative binomial model. With use of unadjusted regression analysis, we found that increased seizure frequency, reduced medication self-management, increased anxiety, increased depression, increased felt stigma, and lower social and medical epilepsy knowledge were each significantly associated with increased use of ED by PWE (Table 2). Multiple regression was performed for ED visits using the predictor variables, which proved significant in the unadjusted analyses. The likelihood ratio test for alpha confirmed that the data was significantly overdispersed [v2(1) = 21.68, p < 0.001]. The model predicting ED visits using the reduced list of variables remained statistically significant [v2(9) = 81.03, p < 0.001]. Having a level of social epilepsy knowledge in the lowest quartile (p < 0.005), a sense of stigma in the highest quartile (p < 0.005), less than optimal medication self-management (lowest quartile)

(p < 0.05), and increased seizure frequency (p < 0.005) remained significant in the adjusted model and predicted more frequent ED use. Based on the IRRs, social epilepsy-related knowledge (2.10, confidence interval [CI] 1.31–3.35) and perceived stigma (2.08, CI 1.32–3.25) were most highly associated with ED use. On average those with a social knowledge score in the lowest quartile had visited EDs in the previous year on two occasions more than those with more knowledge. Those with a stigma score in the highest quartile had visited ED on three occasions more than those with lower stigma scores. Holding other variables constant, compared to those with better self-reported medication management, ED use was increased by 65% in those in the lowest quartile (IRR 1.65, CI 1.02–2.67), and ED use increased by 11% for each category on the ordinal seizure frequency scale compared to the one below (IRR 1.11, CI 1.04–1.19).

Discussion This study provides new information on the frequency of ED use by PWE who attended EDs and their characteristics, and identifies potential targets which, if addressed, might reduce unnecessary attendance. Pattern of ED use First, we show that the pattern of ED use by PWE is not homogenous. One third attended only once in the prior year, >60% had reattended, and one third attended five or more times. The ability of these subgroups to benefit from enhanced support is likely to differ. Attendance at EDs by PWE is different from general ED use. Moore et al. (2009) examined reattendance within a 12-month period and found reattendance unusual—only 24% reattended, most doing so only on one occasion. PWE report a pattern of use similar to those with other chronic relapsing conditions, like chronic obstructive pulmonary disease (COPD), diabetes, and asthma (Egede, 2004; Emtner et al., 2009). We examined the mean rate of attendance in 2010 for adults discharged with these diagnoses at one of our sites (UHL). Epilepsy (mean 1.35) was second only to COPD (1.49) in repeat hospital emergency use. The characteristics of people with epilepsy who attend EDs Bautista et al. (2008) reported that the QoL of PWE who had attended ED in the United States was worse (weighted mean 27.8) than PWE who did not attend (mean 23.4). The QoL reported by our sample was similarly low. Many factors, including seizures and socioeconomic status influence QoL (Jacoby et al., 2009). All PWE attending EDs reported having a seizure in the previous year. In the general population, Moran et al. (2004) found 48% of people with epilepsy are seizure free. Forty-six percent attending EDs reported 2–9 seizures and 42% ‡10 Epilepsia, 53(10):1820–1828, 2012 doi: 10.1111/j.1528-1167.2012.03586.x

1826 A. J. Noble et al. seizures in the prior year compared to 16% 2–9 seizures and 24% ‡10 seizures in the prior year among PWE generally. Anxiety is more frequent among ED attendees. Thirtythree percent had ‘‘case’’ levels of anxiety, compared to 22% in the general population of PWE (Thapar, 2001). ‘‘Case’’ levels of depression were not elevated (Thapar et al., 2005). The ED attendees were also different in terms of the high proportion (68%) that felt stigmatized because of their epilepsy. Those with newly diagnosed epilepsy are at particular risk of perceived stigma (Baker et al., 1999). Using the same scale, Taylor et al. (2011) measured felt stigma among United Kingdom adults with such newly diagnosed epilepsy, but found a lower percentage of patients (53%) reported stigma. Policy implications Most ED users had already received levels of epilepsy care consistent with current criteria for clinical excellence (Stokes et al., 2004). Therefore, attendance is not an indicator of substandard care. However the frequent attendance at EDs by some PWE and their low QoL suggests additional stepped-up care may be needed for this group of patients. Our results suggest what the focus of this might be. In decreasing order of importance, low epilepsy-related social knowledge, high levels of perceived stigma, low levels of medication self-management, and high seizure frequency were associated with increased ED use. A case can be made for these factors causing ED use. In terms of epilepsy knowledge, it is possible that this mediates the relationship between seizures and whether or not a patient attends ED as a result. One means by which this might occur is the knowledge the person has of first aid for seizures. Some patients may attend due to a lack of knowledge about what action to take. Most ED attendees do not require emergency treatment and present after an uncomplicated seizure (Hunt & Touquet, 1986; Hart & Shorvon, 1995). Comparing knowledge of epilepsy score among ED users to those of the wider epilepsy population shows lower knowledge (Elliott & Shneker, 2008). For example, although one third of our sample (incorrectly) stated that it was always necessary to call a doctor or ambulance if a person with epilepsy has a seizure, even if it occurred without complication, only 11% of a wider epilepsy population sample gave this answer (Jarvie, 1993). Greater perceived stigmatization was also associated with ED use. This may be because patients who perceive epilepsy to be a stigmatizing condition find it more difficult to engage with treatment planning. Buck et al. (1997) found that those who reported stigma were more likely to miss taking AEDs. Baker et al. (1999) found patients who felt stigmatized were also more likely to have experienced a seizure injury. To a lesser extent, poorer medication self-management and increased seizure frequency also had independent roles in predicting ED use. This concurs with previous studies. Poor adherence to AEDs is known to be associated with Epilepsia, 53(10):1820–1828, 2012 doi: 10.1111/j.1528-1167.2012.03586.x

increased ED visits and with the risk of seizure-related injuries, which is 21% higher during nonadherent periods (Davis et al., 2008; Faught et al., 2008). The modest role of seizure frequency indicates that ED use is not simply a marker of seizure control. What sort of intervention might be appropriate to address factors such as low knowledge of epilepsy? In Germanspeaking countries, a manual and 2-day course have been associated with increased knowledge scores (Reid et al., 2001). Our group has shown that a nurse intervention can increase epilepsy knowledge scores for those whose knowledge is low (Ridsdale et al., 2000). The benefit of such interventions for PWE warrants exploration. The process whereby patients attend EDs is also important, as when an ambulance has been called, ambulance clinicians perceive lack of guidelines and alternative care pathways (Burrell et al., 2012). Limitations There are limitations to our study. First, the acceptance rate was low (27%). Low participation rates are common in studies on ED attendees and in trials where serial assessment is required (DAFNE Study Group, 2002; Tapp et al., 2007). Those who agreed to participate in our study may not be representative of PWE who attend EDs, thereby limiting the generalizability of results. Comparisons were limited, as ethics do not permit collection of more than demographic data on nonparticipants. However those who agreed to participate were representative of PWE attending EDs from which they were drawn, with one significant difference being that fewer eligible persons of nonwhite ethnicity were recruited. It is well known that recruiting persons from minority groups, as well as those of certain ages and sex, is difficult and that underrepresentation is common (Mosenifar, 2007). In the present study at least, ethnicity was not significantly associated with ED use. Second, cross-sectional design means that conclusions cannot be made about the direction of the relationship between the factors in our regression model. The directionality may be the other way around. Third, because the study was designed as a comparison of the offer of nurse-education, we excluded those who had recently seen an ENS and those referred to neurology by EDs. This could have led to the exclusion of certain categories of patients. However, the number excluded with these criteria was small. Fourth, we used self-report data. This practice is common and accords well with concepts such as QoL, which emphasize the experience of the individual. The reliance on patient reports of seizure frequency does introduce possibility of bias. Although there is limited consensus on how else to measure seizures over a sustained period in community studies, many patients are not aware of or are amnestic for a proportion of seizures (Hoppe et al., 2007). We also relied on self-report from patients on ED use as there is no national record of individual’s ED attendances. PWE have been

1827 Emergency Visits by People with Epilepsy found to be reasonably accurate in recalling use of other health care services, particularly hospital-based ones, over the prior year (Hart & Shorvon, 1995; Jacoby et al., 1998). Although the UK National Health Service differs from health care programs in other countries in some specifics, it is publicly funded like programs in the majority of western countries (Colombo & Tapay, 2004). This means ours results may be more generalizable than evidence derived from studies conducted in the United States, where cost barriers exist. We recruited from an urban, ethnically diverse population with a high degree of deprivation. Findings might be less generalizable to rural and less deprived areas (Tomlinson, 1992). The potential similarity of our multiethnic population to those in metropolitan areas in other countries may, however, mean that our evidence is internationally generalizable.

Conclusion People presenting to EDs due to epilepsy reattend more frequently than most groups with relapsing, chronic conditions. Those attending ED due to epilepsy are not homogenous, with some using ED frequently. Interventions aimed at reducing ED attendance need to consider this, and address the lower knowledge, perceived stigma, poor self-management, and frequent seizures reported.

Acknowledgments We thank the patients who participated in this study. We also thank Drs Parfitt, Walker, Nayeem, and Lasoye, and Ms. Leete, for their assistance in identifying participants, and the members of our study’s Advisory Group, Chaired by Prof. Jacoby. This project was funded by the National Institute for Health Research Service Delivery and Organisation programme (08/ 1808/247). The views and opinions expressed are those of the authors and do not necessarily reflect those of the SDO programme, NIHR, NHS, or the Department of Health.

Disclosure None of the authors has any conflict of interest to disclose. LHG receives salary support from the National Institute for Health Research (NIHR) Dementia Biomedical Research Unit at South London and Maudsley NHS Foundation Trust and King’s College London. The views expressed are those of the author and not necessarily those of the NHS, the NIHR, or the Department of Health. We confirm that we have read the Journal’s position on issues involved in ethical publication and affirm that this report is consistent with those guidelines.

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Supporting Information Additional Supporting Information may be found in the online version of this article: Table S1. Measures used to examine ED attendance. Please note: Wiley-Blackwell is not responsible for the content or functionality of any supporting information supplied by the authors. Any queries (other than missing material) should be directed to the corresponding author for the article.