Seizure 18 (2009) 220–224
`
`Contents lists available at ScienceDirect
`
`Seizure
`
`j o u r n a l h o m e p a g e : w w w . e l s e v i e r . c o m / l o c a t e / y s e i z
`
`Community Survey of Carer’s: Individual epilepsy guidelines (IEG) for rescue
`medication
`
`Christine Cole *, Alison Pointu, Shridhar Mahadeshwar, Annabelle Dudley
`
`Barnet Primary Care Trust, Barnet Learning Disabilities Service, 313 Ballards Lane, London N12 8LY, United Kingdom
`
`A R T I C L E I N F O
`
`A B S T R A C T
`
`Article history:
`Received 30 January 2008
`Received in revised form 6 June 2008
`Accepted 17 October 2008
`
`Keywords:
`Learning disability
`Patients
`Carers
`Individual epilepsy guidelines (IEG)
`Rectal diazepam
`Oral clobazam
`
`1. Introduction
`
`Objective: To evaluate the effectiveness and viability of individual epilepsy guidelines as a user-friendly
`tool for carers of people with epilepsy and learning disabilities. In this paper the term carer refers to
`family carers and support workers.
`Method: A retrospective survey questionnaire designed to ascertain the effectiveness and feasibility of
`individual epilepsy guidelines as a user-friendly tool. This was evaluated for examining clinical practice
`improvements and service delivery.
`Results: 44 questionnaires were mailed to carers who were supporting individuals with epilepsy. There
`was an overall response of 42(96%).
`Conclusion: This survey indicates that the IEG was a useful resource assisting carers with the
`management of emergency seizure events in the community.
`ß 2008 British Epilepsy Association. Published by Elsevier Ltd. All rights reserved.
`
`The frequency of epilepsy in people with learning disabilities
`(intellectual disability) is higher than in the average general
`population. Epilepsy increases with the severity of the learning
`disability and is often refractory and complex.1 Epilepsy is a
`neurological disorder characterised by a susceptibility to seizures
`and defined by two or more unprovoked episodes. It is a dangerous
`life threatening condition and a medical emergency situation with a
`significant morbidity and mortality rate.2 There is a likelihood of
`seizures progressing into status epilepticus if a seizure lasts longer
`than 5 min.3 Studies have highlighted the benefits of the drug rectal
`diazepam for prophylactic intervention and remission of seizures in
`patients with refractory epilepsy who experience acute repetitive
`seizures.4 Diazepam medication is used to avoid status epilepticus
`and is an established treatment procedure. Carers can give rectal
`diazepam and it may avoid the necessity of sending for medical help
`or preventing hospital admission.5 Other benzodiazepines,
`i.e.
`clobazam are often prescribed prophylactically for epilepsy cluster
`events.6
`Within this Learning Disability Service (LDS) the clinicians
`found that in the community settings many of the support
`
`* Corresponding author. Tel.: +44 20 8492 5452; fax: +44 20 8402 5401.
`E-mail addresses: Christine.Cole@barnet-pct.nhs.uk (C. Cole),
`Alison.Pointu@barnet-pct.nhs.uk (A. Pointu),
`Shridhar.Mahadeshwar@barnet-pct.nhs.uk (S. Mahadeshwar),
`Annabelle.Dudley@barnet-pct.nhs.uk (A. Dudley).
`
`workers/carers had difficulty recognising when rectal diazepam
`should be administered and in what circumstances they
`should administer it to the patients. Few epilepsy guidelines
`are available for reference in clinical practice for this use.
`Only one epilepsy instrument by the Joint Epilepsy Council
`(JEC)7 was identified as a recommendation to the procedure.
`Within this tool
`is a standardised template for producing
`epilepsy guidelines for the administration of rectal diazepam (it
`is a generalised template to assist with epilepsy patient care). To
`compliment
`this tool
`the epilepsy nurse and consultant
`psychiatrist in the LDS devised their own epilepsy guideline
`instrument that has subsequently evolved. This assists carers by
`providing individual directions for administering emergency
`medication for people with learning disabilities who have
`refractory epilepsy, that reside in the community. This process is
`also supported by the NICE epilepsy document8 that advocates
`information should be provided in formats,
`languages and
`approaches, which are suited to the individual requirements for
`patients with epilepsy.
`An important factor of the individual epilepsy guidelines
`(IEG) is it contributes and is intrinsic to eliminating risk or
`minimising adverse risks to patients who have recurrent
`seizures.9 To devise IEG’s for this patient group involves a
`multidisciplinary approach with partnership working research-
`ers McNeil et al.10 claim this way is a reliable form of practice in
`measuring assessment of risk. The learning disability service
`completed a service evaluation of the IEG through a survey of the
`carers who use this tool.
`
`1059-1311/$ – see front matter ß 2008 British Epilepsy Association. Published by Elsevier Ltd. All rights reserved.
`doi:10.1016/j.seizure.2008.10.003
`
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`C. Cole et al. / Seizure 18 (2009) 220–224
`
`221
`
`Table 1
`Epilepsy seizure monitoring-chart.
`
`Date
`
`Time
`
`What happened prior
`to the seizure, i.e. triggers,
`illness, menstruation, constipation
`
`Description What happened
`during seizure, i.e. jerking of
`limbs, cyanosed
`
`Recovery–confused, tired, incontinent,
`PRN drugs given, i.e. rectal diazepam,
`oral clobazam. Taken to hospital
`
`Duration of seizures
`
`Signature
`
`–
`
`–
`
`–
`
`–
`
`–
`
`–
`
`–
`
`2. Criteria for the individual epilepsy guidelines
`
`IEG were devised when a patient presented with refractory
`epilepsy or had frequent epileptic seizures approximately 1 or
`more a month. IEG were drawn up from the evidence of 2 weeks
`recorded seizure events, or 5 or more recorded episodes of a
`seizure. Seizure diaries were used and an epilepsy seizure
`monitoring-chart was created so that a narrative description log
`of the seizure event could be obtained when carers witnessed a
`seizure. The epilepsy seizure monitoring-chart is shown in Table 1.
`This provided a presentation record of the type and descriptions
`for the individual’s epilepsy seizures.11,12 The seizure chart was
`based on the behavioural approach using the antecedent behaviour
`consequence (ABC) analysis.13 This enables carers to collect as
`much supportive information about the individual characteristics
`pre and post seizure. This is important information for doctors as it
`aids distinguishing the preictal, ictal and postictal stages which can
`be difficult to detect when they co-exist with psychiatric and
`behavioural symptoms.14–16 Many studies have highlighted the
`complications of monitoring and diagnosing seizures due to the
`dual diagnosis in the learning disability population.17,18
`The patients IEG’s were produced in consultation with carers,
`relatives and significant others, i.e. day/residential placements;
`respite care services staff and health professionals (nurses,
`psychiatrists, neurologists and general practitioners (GP)).
`A template was created outlining the criteria for the individual
`epilepsy guidelines (Fig. 1).
`To produce the template for the IEG a number of sources were
`utilised to provide an accurate description and duration for the
`category of epilepsy seizures.19–23 Some patients had their IEG’s
`updated on 1–4 occasions for reasons such as;
`
` Change of epilepsy status, i.e. type or frequency.
`
`Fig. 1. Epilepsy individual epilepsy guideline template.
`
` Carer’s required further clarification/structure to carryout the
`procedure.
` Change of drug regime.
` Oral prophylactic antiepileptic medication was prescribed pro re
`nato (PRN) as and when necessary, i.e. diazepam, clobazam.
` For oral diazepam prescription when individuals refuse to
`consent to the rectal administration route.
`
`the individual epilepsy guidelines, a
`On completion of
`standardised GP letter was mailed out to the patient’s GP/
`neurologist for signed endorsement of the IEG.
`
`3. Methodology
`
`This is a retrospective survey questionnaire designed to
`ascertain the effectiveness and viability of individual epilepsy
`guidelines as a user-friendly tool. A 10-item ‘carer’s satisfaction’
`questionnaire was designed to obtain responses regarding the IEG
`(Fig. 2).
`This survey was supported by the local Primary Care Trust (PCT)
`Clinical
`(Audit) Effectiveness Department. The sample was
`selected from an outpatient’s learning disability clinic list. The
`participants were patients with learning disability and complex
`refractory epilepsy. In total 49 patients had received completed
`individual epilepsy guidelines during the period of 2000–2006. Of
`the 49 patients three people had died and two had moved out of
`the borough bringing the final sample to 44.
`The questionnaire and an explanation cover letter giving details
`of the epilepsy survey were mailed to 44 carers (support workers/
`family carers) for completion. A follow up telephone call was made
`to 2 homes in order to collect the information from carers that had
`not responded in writing. Data was inputted onto Microsoft Excel
`and analysed using SPSS for Windows, version 15.
`
`4. Results
`
`42 out of 44 questionnaires were returned, which gave an
`overall response rate of 96%. Analysis was carried out based on the
`42 returned questionnaires.
`In the United Kingdom a national training standard has been
`established by the Joint Epilepsy Council for the administration of
`rectal diazepam. It outlines the requirements necessary to carry
`out this procedure. In view of this Barnet Learning Disability
`Service (BLDS) had produced a borough-wide epilepsy protocol
`and epilepsy training programme24, which complies with these
`standards. In answer to question 1, from the ‘Carer Satisfaction’
`Questionnaire’ 26(62%) carers had received Barnet Learning
`Disability Service epilepsy training, with 16(38%) not receiving
`the training. Fig. 3 shows how often the IEG is utilised when the
`patient has a seizure.
`There were 34(80%) carers who said they always use the
`epilepsy guidelines when a patient has a seizure. Only 2(5%) carers
`reported that they usually use the guidelines, 2(5%) sometimes and
`2(5%) never, 2(5%) carers did not respond to this item in the
`questionnaire.
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`222
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`C. Cole et al. / Seizure 18 (2009) 220–224
`
`Fig. 2. 10-item ‘Carer Satisfaction’ Questionnaire Individual Epilepsy Guidelines. Responses were in the format of YES/NO with the exceptions of Questions 4, 5, 6 and 10
`which, dependent on the answer given, asked for the respondents reasoning.
`
`It is important to obtain the carers opinions and experiences of
`the IEG. In answer to question 3, 41(98%) respondents agreed that
`they found the IEG’s helpful. The reasons for this were explored
`further in question 4. Fig. 4 shows a summarised breakdown of the
`reasons given.
`The most frequent comment made by 12(38%) carers was that
`the IEG’s aided in the management of the client’s epilepsy and
`10(31%) deemed that they aid the administration of medication.
`6(19%) carers felt that the IEG are good for staff to extend their
`understanding. 2(6%) mentioned that the IEG help the needs of the
`individual to be met and 1(3%) that it gives confidence to the carer.
`1(3%) declared that the guidelines need upgrading. Carers were
`then asked whether or not they found the IEG easy to understand, if
`they understood the language used, and had they become familiar
`with the type of epilepsy due to the IEG’s.
`
`Fig. 5 shows that 39(93%) carers found the IEG’s easy to
`understand, 41(98%) carers understood the language used and
`37(88%) carers have become familiar with the type of epilepsy due
`to the IEG’s.
`Fig. 6 shows that 19(45%) carers administered rectal diazepam
`to the patients after the IEG’s were issued. The 22(52%) may
`represent that patient/client seizures were controlled and there-
`fore did not require rectal diazepam. 40(95%) carers felt certain
`when to administer rectal diazepam and 36(86%) carers felt that
`
`Fig. 3.
`‘Carer Satisfaction’ Questionnaire Responses to Question 2. This
`demonstrates how often carers used the IEG’s when client/patient had a seizure.
`
`Fig. 4.
`‘Carer Satisfaction’ Questionnaire Responses to Question 4. This
`demonstrates a summary of the reasons that respondents found the IEG’s helpful.
`
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`C. Cole et al. / Seizure 18 (2009) 220–224
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`223
`
`The study mentioned above by Wulf of evaluating seizures
`highlighted that observational data will differ when carers are
`trained by different methods. Results from this survey indicate that
`26(62%) carers had received the local LDS epilepsy training. This
`provided assurance that many carers had attained adequate
`knowledge to record the patient’s seizure events which supports
`the clinicians formulating the IEG’s.
`In this survey 40(95%) carers are certain when to administer
`rectal diazepam and 36(86%) claim that the IEG’s have made it
`easier for clarification. This is very positive as Shafter25 noted it is
`crucial caregivers can discriminate between ordinary or cluster
`seizures to identify the necessity for PRN rectal diazepam. This
`demonstrates the IEG’s are a functional tool that carers can refer to
`when a patient has recurrent seizures.
`Of the total sample of 42, only 23 individuals were prescribed
`oral clobazam medication, alongside the prescription of rectal
`diazepam. The responses indicated that 20(93%) carers were
`certain when to administer oral clobazam. Only 3(7%) of the
`responses indicated they were uncertain. This is very important as
`often this antiepileptic drug is prescribed for patient’s prophy-
`lactically to reduce potential seizures.
`In the questionnaire the most frequently suggested change to
`the IEG was the need for regular updating. This is very plausible as
`often when patients attend the doctor’s outpatient clinic their
`health circumstances may have changed from the previous
`consultation. A patient’s epilepsy condition may be unstable or
`changes occur requiring a medication review, etc. As a result there
`are occasions the IEG will need to be altered to reflect the patient’s
`clinical status.
`From the survey it is suggested that the IEG’s may act as an
`educational resource. This is supported in the survey by 37(88%)
`carers agreeing that they have become familiar with their clients
`epilepsy due to the IEG’s. This is a very positive point as education
`is fundamental in raising patient care.26
`The IEG’s are an influential communication resource for sharing
`information with health professionals. When the patient has a
`seizure in the community it could be utilised as additional data on
`admission to hospital as a proactive crisis plan, i.e. Accident
`for medics/personnel.27 This is also
`Emergency Department,
`supported by the response that 34(81%) carers referred to the
`IEG when a person in their care had a seizure.
`A limitation of the IEG’s is that they are very comprehensive and
`initially time consuming. Principally it is due to the frequent
`liaising and conferring with the patient/carers and significant
`others to produce them. This process is essential to ensure that the
`carers understand and are satisfied with the IEG’s. Fortunately the
`advantages compensate for this as it increases patient/carers
`satisfaction as affirmed by the results of this survey, prevents
`hospital admissions, and enables the person to receive emergency
`treatment by familiar people.
`
`6. Conclusion
`
`This survey indicates the IEG’s are a viable resource. The survey
`illustrates that carers and patients benefit from the ‘hands on’
`person centred approach towards epilepsy care. This study shows
`that multidisciplinary collaborative working method is important
`for achieving carer and patient agreement.
`These IEG’s could be viewed as a means of minimising patient/
`carers anxieties and stress during emergency events and reduce
`the need for hospital admissions. It is possibly a cost saving scheme
`with likely economic savings made to the National Health Service
`(Primary Care Trust) by decreasing the number of patient
`admissions to hospital.28 The International League Against
`Epilepsy (ILAE) advocate there is a need to explore the economic
`
`Fig. 5. ‘Carer Satisfaction’ Questionnaire Responses to Question 5, 6, and 7. These
`demonstrate whether or not carers found the IEG easy to understand, whether or
`not they understood the language used and whether or not they have become
`familiar with the type of epilepsy due to the IEG’s.
`
`Fig. 6. ‘Carer Satisfaction’ Questionnaire Responses to Question 8, 8a, 8b, and 9.
`These demonstrate whether or not carers were certain when to administer PRN
`rectal diazepam and PRN oral clobazam and whether or not the IEG has made it
`easier to know when to administer rectal diazepam.
`
`the IEG had made it easier to know/how to administer rectal
`diazepam. Twenty patients (48%) were prescribed oral clobazam
`medication and were certain when to administer oral clobazam
`medication. The other 19(45%) were not prescribed this medica-
`tion.
`The last question 10 from the carer’s satisfaction questionnaire
`asked if there was any other information they would like included in
`the IEG. 6(14%) carers wanted the IEG updated.
`
`5. Discussion
`
`The survey results demonstrate that 34(80%) of the carers
`utilised the IEG’s every time an individual had an epileptic seizure.
`This suggests as a clinical working tool it was effective for assisting
`many carers with the application of PRN medication. 39(93%)
`carers found the IEG’s easy to understand and 37(88%) carers were
`more informed about carrying out the procedure of administering
`rectal diazepam, as a result of the guidelines. There were
`comments that indicated it was helpful to have the IEG as a
`reference for regular and new support workers that supervise
`people living in the community. It enabled carers to be familiarised
`with the patient’s seizure pattern and epilepsy management. These
`factors are confirmed by 41(98%) carers claiming to understand the
`terminology used in the IEG.
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`C. Cole et al. / Seizure 18 (2009) 220–224
`
`considerations of epilepsy systematically29 and this survey
`provided one avenue for this.
`The intention is to provide a structured approach for devising
`epilepsy guidelines for the learning disability service. The plan is in
`the future for adult learning disability patients to use buccal
`midazolam medication (an alternative to rectal diazepam which is
`less intrusive) and develop guidelines using this process.30
`
`Acknowledgements
`
`Thanks to Dr M Shah, Dr Bhandarkar, and Laura Findlay for their
`support during this project, and thanks also to the anonymous
`reviewers at Seizure Journal for their helpful comments.
`
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