Can an epilepsy nurse specialist-led self-management intervention reduce attendance at emergency departments and promote well-being for people with severe epilepsy? A non-randomised trial with a nested qualitative phase

On an individual level

The same studies found that 30–50% of PWE have had an epilepsy attack in the previous year and 40% have two or more seizures per year. 24,25 People with poorly controlled epilepsy face restrictions in activity, such as driving, which in turn affects work and social participation. Indeed, epilepsy alone accounts for 1% of all global disability, as measured by productive life-years lost. 29 Poor epilepsy control is also associated with higher rates of psychological distress, including anxiety and depression, and perceived stigma. 30,31

On acute hospital service use

One study24 found that 18% of PWE had attended a hospital emergency department (ED) and 9% had been admitted to hospital for epilepsy in the previous year. A different study32 found that 13% of PWE attended an ED for epilepsy, with a mean number of visits of 0.3. Shohet et al. 33 explored this issue using data from the 2004 Quality and Outcomes Framework (QOF). 34 The QOF operates as a means of linking the income of English primary care general medical practices to care quality. As part of this, practices annually report the percentage of PWE (aged ≥ 16 years) registered on AEDs who were seizure free in the last 12 months. Shohet et al. found that poor epilepsy control measured according to the QOF34 was strongly associated with higher levels of emergency epilepsy-related hospitalisations. For those PWE-related emergency admissions, the mean number of admissions was 1.3. There is a gap in the evidence with regard to the frequency of ED use by PWE. However, use of health-care services is often not evenly distributed. 35 Some people attend infrequently or not at all, whereas others use services frequently.

Moore et al. 36 examined reattendance within a 12-month period to an inner London hospital ED amongst the general ED population. Reattendance was unusual – only 24% reattended, most doing so on one occasion only. In contrast, those with chronic conditions with episodic relapse reattend more frequently. International evidence shows that up to 67% of patients with chronic obstructive pulmonary disease (COPD)37 and 42% with asthma37 or diabetes38 reattend within a 12-month period.

The distribution of ED use is unknown in epilepsy. However, there is evidence that it is the most frequent neurological reason for emergency readmission into hospital. 39 If some people do attend EDs more frequently, there is a gap in the evidence about what their characteristics are, whether this service use is appropriate or preventable and, if so, by what means.

Is it self-care or rehabilitation?

Individuals have described their experiences of epilepsy movingly. 68–71 Once diagnosed with epilepsy, people vary in their ability to manage their condition and participate fully in daily life. The needs of people and the skills of care providers need matching,72 with the addition of an overarching strategy. 73 Health services can be conceptualised as promoting and providing for self-help and/or rehabilitation. This includes prevention of death and disability by the comprehensive and systematic care of established disease. This is sometimes more a vision than a reality; nevertheless, care models lie on a continuum, which attempts to provide a theory about how services might match people's needs.

A small US study with ‘hard’ outcomes

There is evidence from a US study80 that a nurse-led intervention can help patients manage their epilepsy and reduce hospital admissions. Nurses led on helping patients who had been hospitalised for epilepsy to manage their condition, and this was associated with a reduction in seizure-related readmission at 90 days (0/23 patients in the intervention group and 3/19 in the control group). This was a small but interesting trial. Results from some case series also suggest that nurse interventions may reduce ED visits and admissions. 81,82

Recruitment

From May 2009 to March 2011 we prospectively recruited PWE attending the EDs of three London hospitals because of their condition. The hospitals were King's College Hospital (KCH), St. Thomas' Hospital (STH) and University Hospital Lewisham (UHL). These are inner London facilities with comparable EDs. Each is consultant led and offers a 24-hour service with full resuscitation facilities. Together they serve 1 million residents in the surrounding London boroughs of Southwark, Lambeth and Lewisham. 84 The prevalence of epilepsy in adults in this population is 0.51%. 85

Each of the boroughs has high levels of social deprivation and ethnic diversity, similar rates of emergency epilepsy admissions and a level of epilepsy control that is worse than the national average. 85,86 Epilepsy control is defined here as the percentage of PWE prescribed AEDs in the local population who were seizure free in the previous 12 months as recorded by primary care doctors in the boroughs as part of England's 2009–10 QOF. 85 According to this measure, 68% of PWE in the three boroughs were seizure free during the period of recruitment, whereas the national average was 74%.

Inclusion criteria

People with epilepsy may visit a hospital ED for a variety of reasons. These include for acute seizures, status epilepticus and seizure-related accidents (e.g. head injuries, burns) and causes (e.g. rash from anticonvulsants). To identify PWE visiting the ED with a wide range of presentations, we convened an expert panel of two emergency medicine and two neurology consultants to identify those symptoms and diagnoses by which the three EDs 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 for eligibility ED records of patients falling into these categories.

People with established epilepsy were invited to participate in our study as long as their attendance was caused by their epilepsy and they were aged ≥ 18 years, had had epilepsy diagnosed for ≥ 1 year, could independently complete questionnaires and had no life-threatening or serious comorbidity (e.g. psychosis). For the purposes of the subsequent trial phase of the project, we also excluded those who had seen an ENS in the previous year, those referred to neurology for an outpatient appointment by the ED and, to maximise the comparability of patients in the two cohorts, those visiting the ED who did not reside within the local boroughs of Southwark, Lambeth or Lewisham.

Invitation letters were sent to eligible PWE shortly following their 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). Written informed consent was obtained from all participants.

Assessment

On recruitment, during a face-to-face appointment with a researcher (AN), participants completed validated generic and epilepsy-specific self-report questionnaires. 62,87–92 These included measures of their epilepsy-related ED visits and care over the previous 12 months, epilepsy-related QoL, seizure frequency, medication management skills, psychological distress, felt stigma, confidence in managing epilepsy (i.e. mastery) and epilepsy knowledge. Table 1 details the specific measures used.

Information collected on participants' epilepsy was restricted to that which was recorded in their primary and secondary care medical records. Deprivation levels were estimated by linking their postcodes to the Index of Multiple Deprivation. 93 As noted by previous studies,43,103,104 information on the seizures that led to the participants' ED attendances was not consistently reported in their ED records and so we do not present this information here.

The standard of epilepsy care reported to have been received by each of the participants in the 12 months preceding recruitment was compared with the following three NICE criteria for good epilepsy care. 8 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 Group104 further recommends that ‘Monotherapy should be the rule . . . in at least 50% of those with established or severe epilepsy’ (p. 44).

Statistical analysis

Participants

During the recruitment period, 943 people attended the EDs because of established epilepsy. Of these, 315 were eligible and 85 (27%) were recruited. We found no significant difference in the acceptance rates between ED sites.

Reasons for exclusion were not living within one of the local boroughs served by the hospital (n = 352, 56.1%), unable to independently complete questionnaires (n = 115, 18.3%), having a serious comorbidity (n = 83, 13.2%), having consulted an ENS < 1 year previously (n = 43, 6.8%) or having been referred to neurology by the ED (n = 35, 5.6%) (Figure 1).

For those recruited, the median age at which epilepsy was diagnosed was 19 years (IQR 13.0–32.5 years) and the median time since diagnosis was 11 years (IQR 6–28 years). In total, 34% lived in areas with a deprivation score in the most deprived quintile for England. 84

The longstanding nature of the participants' diagnoses meant that their epilepsy tended to be described in their wider medical records according to the ILAE's older 1989 system of classification. 94 Specifically, 37 patients (43.5%) were recorded as having experienced both focal and generalised seizures, 37 (43.5%) only generalised seizures and six (7.1%) only partial seizures; for five patients (5.9%) no seizure type was recorded.

The recruited sample was representative of the population from which it was drawn (Table 3), with no significant differences being found between those who were recruited and those who were not recruited. However, when compared solely with those who were eligible but who declined participation, a significant difference was that more white than non-white ED attendees agreed to participate (p < 0.03).

FIGURE 1.

Flow diagram of participant recruitment, treatment allocation and retention.

Pattern of use of emergency departments by people with epilepsy

In the 12 months before the baseline assessment, the 85 PWE recruited from the EDs had together made 270 ED visits for epilepsy. Frequency of ED use amongst these PWE showed a strong positive skew (Figure 2). The median number of visits in the previous year was two (IQR 1–4, range 1–25), with 61% of participants reporting reattendance within 12 months. Specifically, 33 (39%) participants attended only once, 21 (25%) attended on two occasions and the remaining 31 (36%) attended on three or more occasions. This last group accounted for 72% of all ED visits. The median number of visits made by this subgroup was five (IQR 4–7).

Characteristics of people with epilepsy attending emergency departments

Psychological distress

In total, 29 participants (34%) had a ‘case’ level of anxiety and/or depression, 28 (33%) had a ‘case’ level of anxiety and eight (9.4%) had a ‘case’ level of depression. Days since last seizure were not significantly associated with anxiety or depression score.

FIGURE 2.

Histogram of the number of participant-reported ED attendances in the previous 12 months. The distribution shows a positive skew (+3.40). In total, 39% of participants attended an ED once only.

Characteristics of emergency department attendees compared with those of the wider epilepsy population

Table 4 presents a comparison of the ED attendees and the wider epilepsy population on some of the key variables. In descending order of effect, this provides some evidence that ED attendees have experienced more seizures, perceive more epilepsy-related stigma, have recently experienced more anxiety and have a lower knowledge of epilepsy and its management.

Standard of outpatient epilepsy care that attendees had been receiving

Factors associated with frequency of emergency department visits

Because the dependent variable ED use was overdispersed (mean 3.17 < variance 12.89), we adopted a negative binomial model. With use of unadjusted regression analysis, we found that in descending order of importance increased felt stigma, increased depression, increased anxiety, lower social and medical epilepsy knowledge, reduced medication self-management skills and increased seizure frequency were each significantly associated with increased use of EDs by PWE (see Table 2).

Multiple regression was performed for ED visits using those baseline variables that proved significant in the unadjusted analyses. The likelihood ratio test for alpha confirmed that the data were significantly overdispersed [χ²(1) = 21.68, p < 0.001]. The model predicting ED visits using the reduced list of variables remained statistically significant [χ²(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), increased seizure frequency (p < 0.005) and less than optimal medication self-management (lowest quartile) (p < 0.05) remained significant in the adjusted model and predicted more frequent ED use.

Based on their respective IRRs, it was lack of social epilepsy-related knowledge (2.10, 95% CI 1.31 to 3.35) and greater perceived stigma (2.08, 95% CI 1.32 to 3.25) that were found to be most highly associated with ED use. On average, those with a social knowledge score in the lowest quartile had visited an ED in the previous year on two occasions more than those with more knowledge. Those with a felt stigma score in the highest quartile had visited an ED on three occasions more than those with lower felt stigma scores. Holding other variables constant, compared with those with better self-reported medication management, ED use was increased by 65% in those in the lowest quartile (IRR 1.65, 95% CI 1.02 to 2.67), and ED use increased by 11% for each category on the ordinal seizure frequency scale compared with the one below (IRR 1.11, 95% CI 1.04 to 1.19).

Treatment arms

Baseline and outcome assessments

Following their baseline assessment (assessment 1), the results of which were described in the previous section, participants were assessed again at 6 months (assessment 2) and 12 months (assessment 3) post recruitment. As at baseline, measures included those of their epilepsy-related ED visits and care, health-related QoL, seizure frequency, medication management skills, psychological distress, felt stigma, confidence in managing epilepsy (i.e. mastery) and epilepsy knowledge. Table 1 details the measures used at each assessment.

As for assessment 1, the questionnaires at assessment 2 were completed during a face-to-face follow-up appointment with AN, who was not blind to treatment allocation. However, assessment 3 was completed by post. Questionnaires on care received, service use and seizure frequency referred to the previous 12 months at assessment 1 and the previous 6 months at assessments 2 and 3.

Sample size

Jacoby et al. 32 found that 27% of PWE in the UK with uncontrolled epilepsy (more than one seizure a month) make at least one ED visit per year. We considered that the intervention might reduce this to 7% (rate ratio 0.26), partly by more effective self-management and partly by more frequent and appropriate use of non-emergency services. Following Parmar and Machin's113 formulae, full data on 60 participants in each treatment group would give 80% power to detect such a difference. We planned to recruit 160 subjects to allow for 25% loss to follow-up.

Statistical analysis

Participants

Epilepsy care received by participants following recruitment

Outcome analyses

Recruitment for nested qualitative study

To avoid biasing the questionnaire responses, participants for this nested study were interviewed after they had returned the 12-month follow-up questionnaire for the trial. Interviews were conducted until responses indicated that the saturation point had been reached and no further interviews were required. The first 24 trial participants who sequentially completed the final follow-up were invited for interview.

Procedure

Interviews were conducted by a researcher independent of the trial and intervention (CV; please see acknowledgements section). Depending on each participant's preference, interviews were undertaken at their home or in our university office. The majority of interviews lasted for 1 hour (IQR 44–69 minutes). If the participant asked for a family member or ‘significant other’ to be present at the interview, this was agreed by us.

The topic guide was informed by a literature review and four open interviews with PWE not involved in the trial but who had attended an ED because of their epilepsy and seen the ENS more generally.

To explore patients' reasons for attendance, the topic guide first required the interviewer to ask participants to recall their most recent epilepsy-related attendance at the ED, the circumstances leading to the attendance, who made the decision to call the emergency medical services and whether attendance was the users' preference or not. Those participants who had received the intervention were then asked about their experiences of the intervention; whether they found it helpful and, if so, how and why; and whether they felt that any improvements could be made to the intervention. Throughout the interview, participants were encouraged to talk freely, with the interviewer probing and prompting responses as required.

Data analysis

Interviews were audio recorded and transcribed verbatim. Data were analysed thematically117 using the software package NVivo 9 (qSR International, Southport, UK). The researchers AN and CV read each transcript line by line and generated codes through open coding and then categorised these thematically. Relationships between themes were then identified through constant comparison of the transcripts, codes and categories. LR and MM reviewed the codes and their application and suggested alternative interpretations, and further interrogation of the data was undertaken until consensus was reached about explanations, relationships and influences on behaviours.

Theme 1: context and presence/absence of a ‘significant other’

Participants distinguished between seizures that occurred within the home and seizures that occurred elsewhere.

Theme 2: perspectives on whether use of the emergency department was the ‘right choice’

Theme 3: describing what ‘an emergency’ was generally

Most participants (n = 13) stated that only in particular medical circumstances would they feel that emergency medical services were required. Ten respondents mentioned specific criteria to use to determine when it was appropriate to call an ambulance. One said:

injury is the only cause I see for medical attention really to be checked over. If it's something minor, it doesn't need medical attention, it wastes hospital time.

Participant number 10 (male, 26 years)

However, many respondents proposed a broader social definition of an emergency state, which was influenced by the presence or absence of their significant others. They identified that, if their network of family/friends were present and able to cope, then calling the emergency medical services would not be necessary:

If I was at home then me mum can turn around and say to herself ‘right I can cope with that . . . I'll just stick her to bed’.

Participant number 3 (female, 45 years)

They described that their ED attendance was necessary when their significant other was absent, sometimes because the significant other was responsible for delivering their medication, as this respondent explained:

But if I'm not at my mum's and have one here, I always call the ambulance. [T]hat's why, Dr [Name] gave me diazepam to give to my mum. So if I go in one, she shoots it up to me, and then I come out of it.

Participant number 19 (male, aged 23 years)

Three respondents regarded calling the emergency medical services as routine. They expressed fear of the risk of sudden, unexpected death, possibly exacerbated by living alone, with no support network and poor knowledge of the condition. One said of her seizures:

Felt this thing was catching me, afraid I might die, and no one knows, that is why.

Participant number 6 (female, aged 68 years)

Theme 1: limitations of usual care

Participants consistently highlighted that their usual epilepsy care had not equipped them with sufficient information about epilepsy despite having typically been diagnosed with epilepsy for ≥ 5 years. Many described this as contributing to them lacking confidence in self-management. Participants described how they had often left usual care consultations with unresolved questions and uncertainties:

They told me it was epilepsy, but they didn't explain what it really meant . . . I didn't know whether it was affecting me personally, or my brain, or what. I didn't know.

Participant number 4 (female, 91 years)

Primary care doctors were felt to be available for patients to see but to be often lacking in expertise in epilepsy to enable them to satisfactorily answer their questions:

When you go to your family doctor and you ask them a question, they say, ‘Oh I don't know, why don't you hold that question for when you next see your consultant’, which is twice a year!

Participant number 15 (female, 34 years)

Hospital specialists, on the other hand, were frequently perceived to be poor listeners and not interested in the patient's perspective, or the wider psychosocial difficulties that patients were experiencing whilst living with epilepsy:

When I go and see my consultant, there's very much a sort of, ‘Right, this is your condition, this is what we're going to do. Any questions? No. All right.’

Participant number 8 (male, 21 years)

Theme 2: what the epilepsy nurse specialist-led self-management intervention offered and how it was different

All but one participant reported having valued or even enjoyed the experience of the intervention to some degree:

A generally very useful conversation. Ten out of ten.

Participant number 9 (male, 59 years)

First, it helped satisfy some participants' need for information about epilepsy:

She knew her subject very well. Whenever I asked a question, she was able to respond straightaway . . . I think that's a lot better service.

Participant number 12 (female, 34 years)

Sessions were also perceived to be more relaxed. This helped participants to feel able to ask questions and to be involved in the content of their care:

It was less formal than with the doctor. You felt that you could actually ask questions . . . With [nurse name] I felt it was far more about me . . .‘What do you want to know about?’

Participant number 8 (male, 21 years)

Participants appreciated the empathic approach adopted by the ENSs and valued their attention to the often broad challenges of living with epilepsy:

[Nurse name] is more helpful than my doctor. We talked about everything, about epilepsy and fertility, about sex . . . She introduced me to a support group for epilepsy. Suggested I go for counseling and so many things like that. But Dr [Name] will always talk to me only about epilepsy. Never the wider aspects.

Participant number 18 (female, 31 years)

The longer length of the nurse-run sessions compared with usual care was also valued as it permitted information to be thoroughly explained, and also meant that complex challenges in patients' lives could be explored and needs identified:

I have had chronic pelvic pain that goes back to when I gave birth to my son fourteen years ago . . . She [the nurse] asked physio if they could see me as a priority because the pain affects my sleep which affects my epilepsy, and then we have this constant circle. They did see me. They've discharged me now, but I'm maintaining it. If I can handle the pelvis, I can handle the epilepsy.

Participant number 15 (female, 34 years)

The nurses offered participants their office telephone number. Some commented on the usefulness of this as it meant that they had access to rapid support in managing challenges from their epilepsy as they arose.

Theme 3: specific benefits that participants received from the intervention

Reflecting the intended responsive nature of the intervention, a variety of benefits were identified that involved emotional well-being, ability to take antiepileptic medication and confidence in managing seizures.

The number of domains in which a participant perceived benefit to have occurred and the magnitude of this benefit was broadly linked with the number of ED visits that he or she reported having made in the year before trial recruitment, with those who had used the ED the most describing more benefit. In contrast, participants who had used the ED once in the last year typically reported fewer benefits and they tended to be restricted to emotional well-being. There was no suggestion that duration of epilepsy exerted a similar influence.

Theme 4: why for some the benefits were more limited

People with epilepsy who reported at baseline having used the ED on only one occasion reported the fewest benefits. The main reason given for this was that, although they felt that usual epilepsy care had not addressed all of their support needs, they believed that they had the capability, disposition and/or confidence to overcome these limitations by themselves. One said:

This is going to sound terrible . . . I think it [the intervention] is absolutely vital for somebody who is less intelligent, less self-aware; less inquisitive . . . I'm not trying to be pejorative or anything . . . I'm just saying that, you know, if I don't understand something, I go out and I find out about it . . . I'm a ‘why’ person.

Participant number 5 (male, 56 years)

These people felt that their epilepsy was not as ‘severe’ as that of others and that for them the experience of seizures and use of the ED was atypical. The seizures that led to these participants' ED visits were mostly described as being precipitated by an unusual event in their life, such as a virus or stress:

I'm totally independent. Don't need any looking after whatsoever . . . I am not the normal ‘run-of-the-mill’ in terms of people with epilepsy that you'll see at the emergency department . . . I had been at home. Been working really hard. I'd been out to a party the night before. Was stressed out with all sort of things . . . I was in the bathroom in the morning . . . fell down . . . hit my head and [partner's name] came and said, ‘Oh, you know, that's a hospital job’ . . . first time in a long, long time.

Participant number 9 (male, 59 years)

Costing

Contacts with the intervention nurses were collected centrally and other service use was measured with the Client Service Receipt Inventory (CSRI) for the 12 months before the baseline assessment and the 6 months before the 6-month and 12-month follow-ups. 95 The CSRI was interviewer administered with service use information self-reported by participants. Services included secondary care, primary care and social care. Data were collected on whether or not a service was used, the number of contacts and (when relevant) the typical contact duration. For inpatient care the number of days spent in hospital was recorded. Medication taken as a result of epilepsy was recorded at each time point. The CSRI also asked for information on lost work days (for those in employment) because of health problems.

Service costs were calculated by combining the service use data with appropriate national unit cost information. For most services, unit costs were obtained from the annual compendium from the University of Kent. 121 Medication costs were taken from routine Prescription Cost Analysis data. 122 Lost production was valued by combining lost work days with the national average wage rate. 123

Benefit measurement and valuation

The National Institute for Health and Clinical Excellence recommends that, when possible, economic evaluations use QALYs as the outcome measure. QALYs combine information on quantity of life and health-related QoL, with the latter measured on a scale anchored by 1 (full health) and 0 (death). The European Quality of Life-5 Dimensions (EQ-5D)124 combined with UK weights125 was used to generate the health-related QoL scores at baseline and each follow-up point. The total QALYs accrued for each were calculated using area under the curve methods, and QALYs were compared between the two groups using a linear regression model adjusting for baseline health-related QoL.

Baseline analyses

Baseline costs represent the costs of caring for patients with epilepsy prior to the intervention being provided. Use and costs of different services were described and variables associated with cost variations were identified using a generalised linear model with (1) service costs and (2) service costs plus lost employment costs used as the dependent variables. Independent variables included in the model were age, gender, ethnicity, marital status, duration of illness, type of seizure at onset, current type of seizures, presence of psychiatric/neurological comorbidities and presence of learning disabilities. The cost data were positively skewed and we specified a gamma distribution in the model. The relationship between independent variables and cost was assumed to be additive and we therefore used an identity link function. Patients were recruited from three centres and, to account for the potential dependence between patients within sites, we used the cluster option in the (Stata) model.

Follow-up analyses

Total service costs for the 12-month follow-up period were compared between the two groups using a linear regression model with adjustment for baseline service costs. As before, bootstrapped 95% CIs were generated around the regression coefficient representing the cost difference.

Health-care costs were combined with the QALY data in the form of an incremental cost-effectiveness ratio (ICER), calculated by dividing the incremental costs for the intervention group compared with the comparison group by the incremental QALY gain. The ICER is thus based on point estimates of cost and outcome differences. To address uncertainty round the ICER we generated 1000 resamples using bootstrapping with replacement and calculated cost and outcome differences for each resample. These 1000 cost–outcome pairs were plotted on a cost-effectiveness plane.

To aid interpretation of the results we generated cost-effectiveness acceptability curves (CEACs) using the net benefit approach. The latter is defined for each participant as the monetary value of the outcome (i.e. QALYs accrued) minus the cost of achieving this. A range of monetary values for a QALY gain were used, from £0 to £80,000, in increments of £5000. For each value, a regression model was used to estimate the difference in net benefit between the groups. Bootstrapping was used to generate 1000 regression coefficients for each model and the proportion of these that exceeded 1 represented the probability that the intervention was the most cost-effective option at that particular monetary value of 1 QALY. This information was plotted on a chart to produce the CEACs.

Data related to, at most, a 1-year period and so discounting of costs or outcomes was not applied.

All analyses were performed using Stata 11.

Baseline analyses

During the 12 months before baseline all participants had ED contacts (Table 12). Around one-quarter of participants spent time as an inpatient and for these the average time in hospital was around 5 days. Relatively high numbers of participants also spent time in the clinical decision unit (which is a short-stay hospital unit attached to the ED), had outpatient contacts and saw a GP. In total, 47 (55.3%) of the 85 patients had been admitted to an inpatient hospital ward and/or an ED clinical decision unit for epilepsy in the previous 12 months. Nearly all took some form of epilepsy-related medication. Inpatient stays and time in the clinical decision unit accounted for 43% of service costs. ED visits accounted for 7% of total service costs, and medication accounted for 19%. The cost of lost employment was relatively low.

From Figure 3 it is clear that the costs were heavily skewed. One patient was an extreme outlier because of an extended period of time in hospital and this individual's data were excluded from the analysis of baseline costs. Table 13 shows the mean costs for the remaining 84 patients. Costs did not differ substantially by demographic characteristics; however, costs were lower for younger patients and for those who were divorced/separated. Costs appeared to follow a U-shaped distribution in relation to illness duration.

The regression of service costs on patient characteristics revealed that black and ethnic minority patients had costs that were on average £733 (95% CI £401 to £1065) higher than the average for white British patients. Total costs were also higher (by £714 on average) for black and ethnic minority patients (95% CI £384 to £1045), for women (difference £709; 95% CI £44 to £1374), for those whose initial seizure had an undefined onset compared with a focal onset (difference £733; 95% CI £11 to £1348) and for those whose current seizures were partial rather than undefined (difference £2398; 95% CI £605 to £4192). Other differences were non-significant and much of the cost variation was unexplained by the characteristics that we measured.

FIGURE 3.

Distribution of baseline costs.

Follow-up analyses

During the first 6 months of the follow-up period, more participants in the intervention group had ED contacts than participants in the comparison group, but for those who did, the number of contacts was fewer and this resulted in lower ED costs for the intervention group (Table 14). A similar number in each group had inpatient stays but these were longer for the comparison group and hence the costs of inpatient care were 527% higher for the comparison group than for the intervention group. Costs of other services were similar, and total service costs for the intervention group were 27% lower than for the comparison group.

In the 6 months before the 12-month follow-up there was little difference in ED use and costs, but there remained a difference in inpatient costs, which were lower for the intervention group (Table 15). Total service costs for the intervention group were 16% lower than for the comparison group.

The mean total service cost over the entire follow-up period was £2948 for the comparison group and £2202 for the intervention group. The difference in mean costs, adjusted for baseline costs, was £558, and this was not statistically significant (bootstrapped 95% CI −£2409 to £648).

Over the follow-up period the QALY gain for the intervention group was 0.786 and that for the comparison group was 0.807. The mean difference, adjusting for baseline utility, was 0.0211, which also was not statistically significant (bootstrapped 95% CI −0.09 to 0.04). Based on these average costs and QALY differences it can be seen that the intervention resulted in lower costs but fewer QALYs. The ICER was £26,445 (−£558/−0.0211). This means that it costs an extra £26,445 to achieve 1 extra QALY if the intervention is not used.

The cost-effectiveness plane (Figure 4) indicates that the most likely outcome is that the intervention results in lower costs and a poorer outcome as measured by QALYs. There is a similar likelihood that the intervention results in the best outcome (lower costs and more QALYs) and the worst outcome (higher costs and fewer QALYs).

The CEACs (Figure 5) show that if a QALY is given a 0 value then the intervention is the most cost-effective option. However, as a QALY receives a higher value the probability that the intervention is cost-effective falls. NICE uses a threshold of £30,000 to determine the cost-effectiveness of services. At this point the comparison condition is marginally more likely to be the most cost-effective option.

FIGURE 4.

Cost-effectiveness plane showing uncertainty around the cost-effectiveness estimates.

FIGURE 5.

Cost-effectiveness acceptability curves.

Pattern of emergency department use by people with epilepsy

The findings from our baseline assessment showed that the pattern of ED use by people with established epilepsy is different from that of general ED users, and that it is not homogeneous. In total, 39% of PWE attended the ED only once within the previous year, and > 60% reattended. Specifically, 25% had visited the ED on two occasions and the remaining 36% had attended on three or more occasions. This led to about one-third (36%) of ED attendees accounting for almost three-quarters (72%) of all visits made by the group.

Moore et al. 36 examined reattendance at the ED by general ED users within a 12-month period and found reattendance to be unusual – only 24% reattended, with most doing so on only one occasion. The pattern of ED use reported by PWE is most similar to that of people with COPD, another chronic relapsing condition. 37 It does, however, exceed that reported for people with diabetes or asthma. 37,38

In a US study, Bautista et al. 129 reported that the health-related QoL of PWE who had attended the ED was worse (weighted mean 27.8 on an epilepsy-related QoL instrument) than that of PWE who did not attend (weighted mean 23.4). We used the same epilepsy-related QoL instrument and found the QoL reported by our sample to be similarly low.

The characteristics of people with epilepsy who attend the emergency department

The results from the baseline assessment also showed that PWE recruited from south London were different from samples drawn from the wider epilepsy population. We found that all PWE attending the ED reported having a seizure in the previous year whereas, in the general population, Moran et al. 25 found that 48% of PWE are seizure free. In total, 46% attending the ED reported from two to nine seizures and 42% reported ≥ 10 seizures in the previous year compared with 16% reporting from two to nine seizures and 24% reporting ≥ 10 seizures in the previous year amongst PWE generally.

Anxiety was also more frequent amongst ED attendees. In total, 33% of ED attendees had ‘case’ levels of anxiety, compared with 22% in the general population of PWE. 108 However, ‘case’ levels of depression were not raised compared with other epilepsy population samples. 109

The ED attendees were also different in terms of the high proportion (68%) that felt stigmatised by their epilepsy. It has been reported that those with newly diagnosed epilepsy are at particular risk of perceived stigma. 130 Using the same scale, Taylor et al. 90 measured felt stigma amongst UK adults with newly diagnosed epilepsy but nevertheless found that fewer patients (53%) reported stigma.

Predictors of frequent emergency department use by people with epilepsy

Surprisingly, perhaps, we found that, in the previous 12 months, most of the PWE who we recruited from the ED had received epilepsy outpatient care that was in line with national guidelines. 50 This implies that current guidelines for quality excellence do not meet the needs of some people with poorly controlled epilepsy in terms of prevention of ED use. This is consistent with process evidence from a national audit suggesting that ED use offers little added value to care. 52 Using regression analysis we found that, in descending order of importance, less knowledge, more felt stigma, poorer medication management and greater seizure frequency predicted emergency visits before entering the study.

Twelve months after recruitment we found that the baseline variables identified as most predictive of increased numbers of ED visits were, in descending order of importance, lower confidence in managing epilepsy (less mastery), higher number of prescribed AEDs, more felt stigma, higher number of previous ED visits recorded at baseline, greater seizure frequency and higher levels of depression and anxiety. In multivariate analyses, greater felt stigma and lower perceived confidence in epilepsy management remained significantly predictive of ED visits at final assessment.

The results from our cross-sectional analyses of factors associated with previous use at baseline, and of the baseline factors that predicted ED use over follow-up, imply that these features require addressing through the development of interventions to prevent unnecessary ED visits. A case can be made for how these factors lead to ED use.

In terms of epilepsy knowledge, for example, it is possible that this mediates the relationship between seizures and whether or not a patient attends the ED as a result. One means by which this might occur is through the knowledge that a person has of first aid for seizures. Some patients may attend because of a lack of knowledge about what action to take. Most ED attendees do not require emergency treatment and present after an uncomplicated seizure. 24,131 Comparing knowledge of epilepsy scores among ED users and the wider epilepsy population shows lower knowledge among ED users. 110 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 complications, only 11% of a sample of the wider epilepsy population gave this answer. 132

Greater perceived stigma was also highly associated with ED use. This may be because patients who perceive epilepsy to be a stigmatising condition find it more difficult to engage with treatment planning. Buck et al. 133 found that those who reported stigma were more likely to miss taking their AEDs. Baker et al. 130 found that patients who felt stigmatised 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 the results of previous studies. Poor adherence to AEDs is known to be associated with an increased number of ED visits, and the risk of seizure-related injuries is 21% higher during non-adherent periods. 134,135 The modest role of seizure frequency indicates that ED use is not simply a marker of seizure control.

Patients' explanations for attending an emergency department for epilepsy

This was a mixed-methods study including quantitative, qualitative and health economic analyses. From the perspective of PWE, the results of the study will be best represented by the stream of the study that collected and analysed the views of users. We found that users viewed their need to use the ED as contextual. It depended partly on whether their seizure occurred at home or in a public space, and partly on the knowledge, experience and confidence of those nearby of what to do. Other triggers were fear of death among PWE and others.

People with epilepsy frequently cannot make decisions themselves when they have a seizure, as they are unconscious or confused. From the patients' perspective, use of emergency medical services was regarded as appropriate, particularly when they are away from home and when they do not have someone who knows about seizure management nearby.

Our results concord with those of previous studies. An internet survey of public attitudes to witnessing a seizure found that two-thirds of respondents would promptly contact the emergency medical services. 136 Our participants said that they would expect this action to be taken by members of the public.

Fear of death or ‘death anxiety’ has also been described in a quantitative study of patients attending outpatient neurology clinics. 137 It was found to be associated with generalised epilepsy, higher anxiety scores and lower levels of education. We did not measure ‘death anxiety’ using quantitative methods but the cohort group in which this qualitative study was nested did have higher anxiety scores and a lower knowledge of epilepsy than PWE in other studies of the general epilepsy population.

Health economics of emergency department use

Emergency department visits at baseline accounted for 43% of total service costs, with medication accounting for 19% of total service costs. The regression of service costs on patient characteristics revealed that black and ethnic minority patients had costs that were higher on average by £733 (95% CI £401 to £1065). Total costs were also higher (by £714 on average) for black and ethnic minority patients (95% CI £384 to £1045). As part of the capacity development associated with this project (see Appendix 5), one of our MSc students (Fazia Sheikh, 2012) has carried out a literature review of the sociocultural perspectives of black and ethnic minority populations living with epilepsy. She found some evidence from the UK that South Asians hold alternative hypotheses about the cause of epilepsy and potential treatments, which may be important for clinicians to be aware of and address. 60 There is no evidence to date on the views of PWE from black ethnic minority communities, which compose 40–50% of the population of south London. However, there is evidence from research in West Africa, from where many of the black Africans originate, of PWE suffering discrimination, stigmatisation and social deprivation, and of women in particular suffering physical and sexual abuse because of their epilepsy. 59,138 This might also be experienced to a lesser degree by black ethnic minority PWE living in the UK, as a consequence of past experience, or through the influence of family or friends. This could be an important barrier to black ethnic minority PWE acquiring the knowledge and skills necessary for self-management. If this were so, these PWE might require a different and stepped-up intervention to address stigma for them to engage more fully with learning self-management skills.

Effect of the epilepsy nurse specialist-led self-management intervention on subsequent emergency department visits

Health service planners need interventions to reduce unnecessary emergency hospital visits by people with established epilepsy. In this study we have completed the first trial of an intervention to achieve this. We compared the effectiveness of a self-management intervention delivered by an ENS with the effectiveness of TAU alone for reducing subsequent ED visits. No statistically significant benefit was found in terms of reducing subsequent visits to the ED, nor was there any improvement in patient well-being.

Recruitment for our study was slower than anticipated and the trial stopped with 69 participants instead of the planned-for 120. This is reflected in wider CIs for the key estimates and consequent ambiguity in some conclusions. The results from our adjusted analyses are, nevertheless, evidence against the possibility of a large (50%) reduction in number of ED visits.

Why was the intervention not effective? First, although previous evidence had suggested that such interventions could reduce the frequency of ED visits,80–82 this came from studies using weak methodologies. This included studies comparing ED visits in patients before and after receiving the intervention, and which did not have a TAU comparison group. All reductions in the frequency of ED visits were therefore attributed to the effect of the intervention. However, the results from our baseline assessment show that, even without the specific support of a nurse, 40% of epilepsy attendees do not revisit an ED in the subsequent 12 months. We included a TAU comparison group to allow for this. The increased methodological rigour of our study may explain why our results are different.

Second, it is also perhaps not surprising in the context of a trial in a deprived area with a group of participants who had more seizures, greater levels of anxiety, a lower knowledge of epilepsy and its management and greater perceived epilepsy-related stigma than the average PWE, that two visits with an ENS lasting in total about 90 minutes failed to change the frequency of ED attendance or impact on secondary outcomes. More intensive interventions are used to improve self-management skills in those with other chronic, relapsing conditions. In type 1 diabetes, for example, a 5-day course is required to improve functioning (glycaemic control) and QoL. 139

Finally, the intervention was not designed to redress all of the factors found to be predictive subsequently, as they were not known. Even if they had been known, the size of the intervention was limited as NIHR terms and conditions required it to be self-funded by the hospital trust as an additional treatment cost. It was probably too dilute.

Cost-effectiveness of the epilepsy nurse specialist-led self-management intervention

The health economic evaluation provided a different perspective on the utility of the intervention. Specifically, during the first 6 months of the follow-up period, more participants in the intervention group had ED contacts than participants in the comparison group, but for those in the intervention group who did have contacts, the number of contacts was fewer and this resulted in lower ED costs for the intervention group. A similar number in each trial group had inpatient episodes, but the duration of the stays were longer for the comparison group and hence the costs of inpatient care were 527% higher than for the intervention group. Costs of other services were similar, and total service costs for the intervention group were 27% lower than those for the comparison group.

In the 6 months before the 12-month follow-up there was little difference in ED use and costs but there remained a difference in inpatient costs, which were lower for the intervention group. Total service costs for the intervention group were 16% lower than for the comparison group. The mean total service costs over the entire follow-up period were £2202 for the intervention group and £2948 for the comparison group. The difference in mean costs, adjusted for baseline costs, was £558. This was not statistically significant (bootstrapped 95% CI −£2409 to £648). We did not measure seizure severity at the 12-month follow-up and it is possible that the intervention group had a lower seizure severity.

In the economic evaluation the QALY gain over the follow-up period was 0.786 for the intervention group compared with 0.807 for the comparison group. This result was unexpected and runs counter to the finding that the more detailed and specific epilepsy QoL measure did not show a difference between the intervention and comparison groups. We would tend to give more credibility to the specific epilepsy QoL measure, which covers a longer period of a month rather than a day.

Patients' views of the epilepsy nurse specialist-led self-management intervention and how it compared with usual care

Qualitative evaluation of the ENS intervention, undertaken 1 year after the trial started, added to an understanding of why a lack of effect occurred in terms of a decline in frequency of ED visits after the intervention. About 40% of PWE used the ED only once in the year and felt that they did not need additional input to their self-management. The number of areas in which our participants perceived a benefit to have occurred from the intervention, and the extent of the benefit, were, however, associated with the degree to which the participants had previously visited the ED. Those who had used the ED the most tended to report the most benefit from the intervention. Our results suggest that offering some form of additonal advice and support only to those who attend the ED on more than one occassion in the previous year is perceived as helpful by PWE.

The intervention was almost universally valued by our participants. This finding counters speculation that PWE who have attended the ED may not accept or engage with additional treatment. 41,119 The main reason given for valuing the intervention was that it redressed limitations perceived in their usual epilepsy care. In particular, they felt that the content of the intervention sessions was tailored to their inividual needs, sessions were less time pressured and the ENSs were more considerate of, and attentive to, the broader aspects of living with epilespsy.

The areas in which participants reported benefits to have occurred – in particular, improved emotional well-being (including reduced perceived stigmatisation), better medication management skills and greater confidence in managing seizures – have been suggested as being causally related to ED visits by PWE. 134,135,140–144

As part of a mission for capacity building, we supervised four King's College London MSc Neuroscience students to undertake successful dissertations on epilepsy during the study (see Appendix 5). This contributed to our findings and complemented them. A qualitative study undertaken by one MSc student who was an ambulance clinician focused on the views of ambulance clinicians about their decision-making when called to PWE. 145 Participants reported that their previous experience was important, more so than training, in determining their confidence to manage PWE. But they added that training and guidelines were insufficient and that sometimes decisions were made to avoid a perceived threat of litigation. Ambulance clinicians reported that lack of someone to contact, and of information on patients, were important and could lead to PWE being transported to the ED unnecessarily. 145

Quantitative component

Qualitative component

Health economics component

Priority 1: testing workshops on seizure management for people with epilepsy and their significant others

As a consequence of our exploratory interviews, we believe that all district hospitals might in the future develop and provide regular workshops, for example monthly, on seizure management for PWE, who would be invited to come together with their significant others. These workshops would need to be provided repeatedly to enable PWE to bring different members of their family, a partner or new partner, friends as they become closer and work colleagues whenever they change their employment.

Practical training could be provided on triggers to seizures and how to manage them, as well as on prevention of injury, together with time provided for PWE and their significant others to discuss fears of death. This initiative might be led by ENSs in collaboration with clinicians in emergency medical services. This might be evaluated most rigorously by means of a randomised controlled trial. Mixed methods including a qualitative approach to evaluate users' perceptions of how to present the intervention to other potential users, how users and NHS providers should invite participation from significant others, and the timing, duration and content of the intervention should be considered to optimise participation as well as any benefits of the intervention. We have demonstrated the high cost of ED attendance with few benefits. The trial should be powered to measure potential efficiency savings by means of robust health economic evaluation.

Priority 2: testing self-management education programmes for people with epilepsy

In the UK, self-management programmes have been tested and adopted for other chronic conditions (e.g. diabetes: DAFNE,14 DESMOND,15 X-PERT;16 arthritis17,18). Given the perceived lack of information for PWE, their perception of stigma, their anxiety and their lack of confidence in managing their condition, we believe that there is scope to evaluate longer structured interventions designed to meet these needs. One option is a self-management learning programme for PWE, rather like the 1-week programme that has already been trialled for diabetes and rolled out in the NHS. 139

We have been funded by the NIHR Health Technology Assessment programme (ref. 09/165/01) to modify and test a 2-day course developed in Germany for PWE for the NHS context. 74 This is targeted specifically for people with chronic poorly controlled epilepsy.

From our research evidence and that of others, it is likely that, as in other conditions, for example diabetes, all PWE would benefit from a self-education programme from the time of first diagnosis. We have demonstrated a high level of variation in people's knowledge of epilepsy, which correlates with their general education. For some people step-up learning and support strategies will be required. This may be particularly important in areas of high social deprivation and for ethnic minority groups to tailor learning specifically. We have highlighted the higher cost of health services for our participants of black ethnicity. If more investment, linked to their specific needs, is effective in improving self-management, there is scope for greater efficiency savings as well as patient benefits.

Priority 3: exploring the perception of stigma and self-management

Our evidence suggests that the perception of stigma may be a particularly important mediator between seizures and ED use. Lack of acceptance of their condition by PWE (or their significant others) may prevent PWE from fully accepting their condition and engaging with health professionals to acquire the skills to manage it in the long term. It is currently unknown what support should be offered to PWE who experience felt stigma. When there is stigma and denial, as occurs in other long-term conditions such as addiction, motivational interviewing has been recommended to increase clients' sense of ownership and self-efficacy. It might be feasible to help PWE who also feel stigmatised to engage more fully with self-management by developing a purpose-designed motivational interviewing approach and testing it by means of a randomised control trial.

Priority 4: exploring the perception of stigma and self-management among ethnic minorities

We believe that we have identified a need for more research on the views of black ethnic minority people about epilepsy and self-management. It seems likely from the literature that they are more at risk of felt stigma and this may be a consequence of the beliefs and behaviours held by significant others. We are currently exploring the views of people from this population.

We have highlighted the significantly higher costs of health services incurred by those of black ethnicity. If more investment, linked to specific concerns, is effective in improving self-management, there is scope for greater efficiency savings as well as patient benefits. In a time of unprecedented international migration, we propose that more qualitative research might be carried out on the specific attitudes, beliefs and needs of PWE from ethnic minorities, particularly when addressing them has the potential to reduce health inequalities.

Priority 5: evaluation of the needs of people with epilepsy who attend emergency departments in different areas of the UK

We planned our study in an area of social deprivation in the inner city and completed it before the NASH was published. 165 The NASH has highlighted wide variations in standards of care, with, in particular, poor follow-up, communication and services for PWE attending EDs across the UK. NASH calls for more in-depth research and there is some momentum for hospitals to address the problems identified across the NHS.

Our findings will generalise best to similar metropolitan populations in the UK and abroad. We do not know how people behave in rural areas, where, for example, a trip to the ED may take much longer. Because of this we plan to replicate the first stage of the study, describing quantitatively the characteristics of PWE who attend an ED in a rural area. This is in collaboration with local physician scientists and will be funded by Epilepsy Bereaved. We believe that, although there has been some quantitative research carried out on PWE attending EDs, more can be learned by using mixed methods, including in-depth qualitative and economic research. This requires more funding but may result in efficiency saving in the longer term, as well as improvement in patient outcomes.

Priority 6: development of interventions to manage anxiety and death anxiety for people with epilepsy and their carers

There remains scope for developing and testing other interventions. Specifically, interventions are needed to identify and manage anxiety and death anxiety, for example, using cognitive–behavioural therapy. The way in which risk is communicated to patients has been researched in depth in dealing with, for example, genetic conditions. 166 PWE are at higher risk of death. In addition, sudden loss of consciousness can evoke fear of imminent death. 68–71 In this context more research is needed to develop and test ways to explain risk of death and manage death anxiety among PWE and their significant others.

Priority 7: risk factors for emergency department attendance and risk of death in epilepsy: mortality prevention

At a time of recession and public spending restraint, research can be targeted towards efficiency savings, including prevention of recurrent and clinically unnecessary ED use. We have ourselves focused to some extent on this. However, during the study we identified complex factors that predict ED use. At the same time, deaths that are amenable to medical intervention by identifying and treating risk factors such as hypertension, or preventable by individual behaviour change or public health measures such as smoking cessation/prevention have also been targeted in the UK's NHS policies. 167 Mortality from all causes in the general population of England and Wales declined by 16% between 1993 and 2005; in contrast, mortality with epilepsy recorded as an underlying cause increased by 31% in males and 39% in females during this period. 168

Epilepsy is ranked as the fifth highest amenable cause of years of life lost before the age of 75 years for males and the eighth highest for females. 169 A cohort study of PWE dying over an 8-year period reported that 30% of them died of accidents (mostly drowning and burns), 23% died suddenly, 16% died in status epilepticus and 14% committed suicide. 170 An audit of sudden epilepsy-related deaths in the UK found a lack of communication between professionals and with families and estimated that 40% of adult and 60% of child deaths were potentially avoidable through improved care. 171 The 2012 UK NASH52 found that advice was not typically given to patients who had attended an ED or their carers on seizure management, nor was there referral at the time for assessment by the neurology team or for follow-up by a relevant specialist.

Large-scale epidemiological work might show that frequent use of EDs is a proxy for, or marker of, greater need and risk of death in epilepsy. Our study was small but one out of 85 recruited participants died in the follow-up year. At the same time our research group undertook a case–control study to quantify risks of death in epilepsy, based on the UK General Practice Research Database, which included 1.5 million registered medical patients. 22 The risk factors for mortality identified were recorded alcohol problems, a ‘missed’ prescription for anticonvulsant drugs, a history of injuries, treatment for depression and one or more seizures in the past year. Some of the risk factors identified for death in epilepsy are also predictors of frequent ED use. In the current study people with primarily alcohol problems were excluded as a different nurse specialist service is responsible for their management at hospital. However, the NASH study52 found that epilepsy with alcohol overuse was a frequent correlate of ED attendance. In the current study predictors of frequent attendance were lower confidence in managing epilepsy, a higher number of prescribed AEDs, more felt stigma, a higher number of baseline ED visits, greater seizure frequency and higher levels of depression and anxiety.

People with long-term neurological conditions have received continuing and linked-up care. GPs have acknowledged a lack of competence and confidence in epilepsy management. 172 Until recently there was no funding for epilepsy care in general practice to support systematic identification and monitoring. 173 We believe that there is a need for large-scale programme research to identify risk factors and service use across primary and secondary care, which may link up processes to the goal of reducing avoidable death. This will include large-scale epidemiological work linking data sets, the development and testing of interventions, and mixed quantitative, qualitative and economic evaluation.

Inclusion criteria

• Aged 18 and over.

• Have epilepsy that has been diagnosed and treated with medication.

• Be able to communicate in English sufficiently to complete questionnaires.

• Be resident and registered with a GP in one of the three surrounding PCTs: Southwark, Lambeth and Lewisham.

Exclusion criteria

• Having no diagnosis; new epilepsy leads to a referral to a neurologist.

• Having already seen a specialist nurse for epilepsy in the prior year.

• Alcohol or other substance misuse.

• Other severe medical illness, such as psychosis or terminal cancer.

Patients attending the A&E sites due to epilepsy will be identified by weekly computerised searches of the hospital admission data-bases and with the assistance of the consultants Drs. Ed Glucksman, Tunji Lasoye and Nadeem Nayeem from King's College Hospital, Guys and St. Thomas' Hospital and University Hospital Lewisham A&E departments. The experienced research associate working on this project will send an invitation letter to those patients who have been identified as suitable. Attached to this letter will be the study information letter and an ‘expression of interest’ reply slip and pre-paid return envelope. The research associate will then explain the study in depth with any patients who express an interest. Written consent to participate will be taken by the research associate.

The Research Associate will coordinate the baseline and the follow-up data collection to achieve participation and collaboration throughout. Two competent and qualified nurses with a special interest in epilepsy will work with patients from the intervention group in order that they may be referred to specialist rehabilitation workers from a multidisciplinary team.

Baseline variables and questionnaires will be administered to all patients:

• Age

• Gender

• Racial/ethnic group

• Economic (Index of Multiple Deprivation for postcode) [1]

• Quality of routine medical care (epilepsy components of Quality Outcomes Framework - QOF) in particular for general practices [2]

• Liverpool Quality of life questionnaire [3]

• A knowledge of epilepsy questionnaire [4]

• Psychological distress measured using the Hospital Anxiety and Depression Scale (HADS) [5], and Stigma Scale [6].

• Satisfaction with information on medications (SIMS) [7].

• Medication management skills [8].

• Mastery/confidence in managing epilepsy [9]

• Quality of life in epilepsy measured by the 10-item Quality of Life in Epilepsy questionnaire QUOLIE-10 [10].

• Quality-adjusted life years (QALYs) will be measured with the EQ-5D [11].

• General and epilepsy-related service use in the past 6 or 12 months measured using a version of the Client Services Receipt Inventory (CSRI), modified for use in epilepsy [12].

Intervention Group

An appointment with a nurse with special interest in epilepsy will be offered after the patent has been discharged following an A&E attendance, including access to other members of the multidisciplinary team, and an expert-user group, in addition to usual medical care. The nurse will assess the patient identifying the nature and extent of their problems and the factors relevant to their resolution. Family and or carers will be included, provided the patient agrees. The nurse will help the patient set goals, provide information and support. They will also be offered specific treatments for example to social services, psychology, neurology, occupational therapy, an employment officer, the learning disability team. Further input will be as judged by nurse and client, but will include at least one follow-up appointment three months later. The duration of the intervention will be 3–6 months.

Comparison Group

The comparison group will be offered the usual medical care where no special epilepsy nurse is available and will receive usual medical care.

The baseline questionnaires will be repeated at 6 and 12 month follow up and additional measures taken:

• Primary outcome will be re-attendance at A&E.

• Secondary outcome with be unplanned readmissions to hospital for epilepsy.

• A cost analysis of the above.

• Seizure frequency and severity, the impact of epilepsy, perceived mastery, and medication management skills.

Nested Qualitative interview

A purposeful sample of those respondents' with a range of scores on the Seizure Severity Scale will be interviewed at either their home or a mutually convenient public place. Questions will cover:

• Reasons for attendance at A&E and effects of the circumstance in which the seizure occurred and carers concerns and decision making.

• Patients' views and satisfaction with the ways in which these interventions met or failed to meet their needs.

• Specific benefits and limitations of the intervention examined in detail with particular reference to patients' perceptions of epilepsy.

• Views of and adherence of patients' epilepsy medications and the extent to which the intervention met its objectives of enhancing respondents' feelings of empowerment, support and control in managing epilepsy.

Service Costs

• Data on consultations with nurses and other staff.

• Record the number of days off work due to health problems and specifically epilepsy.

The evidence produced from this study will be useful to inform practice improvement/development in deprived areas and has the potential to promote well being for people with epilepsy.

References