AUTHORS
Catherine Adadevoh¹, Antonio Valentin², Mahmoud Abeidah³, Lina
Nashef
NHS Southwark, ²Department of Clinical Neuroscience KCL-IOP,
³University Hospital Lewisham, 4Department of Neurology, King’s
College Hospital
TOPIC
Audit of analgesic use post-ictally in epilepsy
in adults with and without learning
disabilities.
Introduction
 Epilepsy is the second most common chronic neurological condition
with a prevalence of 0.5% -1% in the general population. This
compares to a prevalence of epilepsy of 20-50% in people with learning
disabilities (LD).
Introduction
The development and severity of epilepsy in the LD population is
influenced by the level of their LD and other additional disabilities, such
as cerebral palsy, sensory impairment, communication problems, poor
physical health, mobility or postnatal brain injury.
Multiple seizure types and higher frequency of seizures are common
within the LD population compared to the general population. Seizures
can be difficult to treat in this context.
Objectives of audit
 To audit the symptomatic use of analgesia post-ictally after complex
partial (CPS) or generalised tonic-clonic seizure (GTCS) between
people without learning disabilities (PWOLD) and those with learning
disabilities (PWLD).
 To establish the proportion of PWLD with complex partial seizures and
generalised tonic-clonic seizures who are prescribed analgesia postictally compared to PWOLD
 To know how many PWLD are believed to have post-ictal pain by
carers compared to self-reporting of pain by PWOLD.
Objectives
 To explore whether carers believe they can identify pain in people with
learning disabilities
Methods
 The audit was approved locally and was
carried out by CA as part of an MSc project.
A questionnaire (addressing seizure types and frequency, severity
of the epilepsy (including NHSS Seizure Severity Scale), date
of last severe seizure and experience of pain/use of analgesia)
was designed and piloted with 12 participants then administered
by face to face interview by CA to consenting patients with
epilepsy or their carers. Data on pain for the more severe
seizure type for each individual were analysed.
Methods
 There was no selection process. Patients were approached usually as
they were waiting to be seen in hospital outpatients or, in residential
care in the community, within the practice of one of the authors (CA).
Criteria for inclusion were:
 Adult patients with diagnosed epilepsy with LD (PWLD) or without
learning disability (PWOLD)
 History of CPS and/or GTCS in the last 3 years (+/-other seizure types)
 A Microsoft excel database was used to enter data
 Data were analysed using SPSS version 15.0 for Windows. Qualitative
data were also noted in relation to comments made by patients or
carers
Results
Participants (subjects or carers) approached = 95
 PWOLD: 65 approached, all consented, 5 did not meet criteria; 60
analysed
 - PWLD: 30 approached (25 consented), all fulfilled criteria; 25
analysed
 Learning disability of the LD participants was established through
review of notes and information from either carers or relatives.
Psychometry was not performed as part of the questionnaire. PWLD
were considered to have severe LD in 56%, profound in 36% and
moderate in 8%.
M-male, F-female, RH-residential home, R-relative, P-parent, OD-occasional drink, ND-no drink, Wweekly.
PWLD(n=25)
Age range,
mean,median
Min=18,max=60
Mean=37.6,
Median=40
PWOLD(n=60)
,
,
Min=17 max=65
Mean=34.8,
median=31.5
Gender
M=16(64%) & F= 9
(36%)
M=24 (40%) & F= 36
(60%)
Responder
15=Carer,6=Parent,
4=Other, Relative (s),
60=Patient
Lifestyle separate
items
10=RH,15= P
30=OD,20=ND,
10=W
History of GTCS
17 (68%)
31 (52%)
History of CPS
8 (32%)
29(48.3%)
Multiple seizure types
23 (92%)
28 (47%)
Mann-Whitney test: use of pain killer (P=.000)
Statistical difference btw PWLD/PWOLD
Use of analgesia
after more severe
seizure type
PWLD
N=25
PWOLD
N=60
0 (0%)
35/60 (58%)
Frequency of use
N/A
amongst those who
took analgesia
Every seizure:
26/35 (74%)
Sometimes: 9/35
(26%)
Seizure frequency PWLD: total 25
Frequency
NO
%
Monthly
2
8
Weekly
6
24
Daily
17
68
Types of seizure assessed in each group (the most severe) and
seizure severity scale (SSC)
SSS for PWOLD with pain mean =13, mode=14, range=18 & median=14. SSS for PWLD with pain mean=15, mode=14,
range=19 &median=15. PWLD were more likely to have GTCS than the PWOLD but not statistically significant.
Seizure
types
PWOLD
CPS
29 (48%)
GTCS
31(52%)
SSC
mean,
median,
range
PWLD
M=13
Mo=14
R=18
Me=14
8 (32% )
SSC
Mean,
Median,
range
17 (68%)
M=15
Mo=14
R=19
Me=15
Seizure frequency PWOLD: total 60

Frequency
NO
%
Yearly
2
3
Quarterly
10
17
Monthly
19
32
Fortnightly
5
8
Weekly
15
25
Daily
9
15
Time of Pain in PWOLD
Time in
mins/hour
Number
%
.10
29
83
1
5
14
120
1
3
TOTAL
35
100
Duration of Pain in PWOLD
Time in
mins/day
Number of
PWOLD
%
1 day
10
28
120min
7
20
3 days
8
23
2 days
7
20
180mins
1
3
720mins
2
6
Site of pain reported by PWOLD
SITE
Frequency
Percentage
Head
6
17%
Lower limb
5
14%
Upper limb
5
14 %
Back
2
6%
Stomach
2
6%
More than one
site/whole body
15
43 %
The type of analgesia use among PWOLD during severe
seizures
Type of
Analgesia
PWOLD=60
LD=25
Paracetamol
15
0
Ibuprofen
10
0
Either
10
0
None
25
25
If analgesia taken how often in PWOLD
No of PeopleShort day
(1)
No of PeopleLong days (2-3)
GTCS
8 (22.9%)
14(40%)
CPS
7(20%)
6(17%)
DISCUSSION
 Seizure frequency and severity was significantly greater (p< 0.001
Mann Whitney test) in PWLD compared to PWOLD.
 PWLD were more likely to have GTCS as the more severe seizure type
but this was not statistically significant (PWOLD 31/60(51.6%), PWLD
17/25 (68%).
 In this audit, 58% PWOLD reported taking analgesia after their more
severe seizure (GTCS or CPS). This compares to none of the 25
carers/relatives of PWLD administering analgesia, even when as
required analgesia was already prescribed, despite significantly more
severe seizures in this group
Discussion
 PWLD, the majority of whom had severe or moderate LD, also had
more frequent seizures, and thus were likely to experience pain more
frequently. Carers expressed the view that they did not know when the
person with LD was in pain, highlighting difficulties with communication.
 Carers may underestimate post-ictal pain in PWLD
 The result of this audit, if confirmed in other cohorts, has practical
implications in this patient group.
 These observations, however, could have been biased by the way
PWLD were identified for inclusion in the audit and by the use of an
unvalidated questionnaire. They have also only been applied in
reference to a small cohort in the same locality and practice may differ
in other
Discussion
 There is debate as to whether people with LD have altered pain
thresholds.
 The recognition of pain in adults with LD is an area that has received
little attention despite affecting quality of life.
 The self reporting of pain has always been regarded as the gold
standard of management of pain.
 In people with LD and impaired communication this may not be
possible. A change in the individual’s behaviour can go unnoticed.
Discussion
 Carers/family are relied on to identify/assess pain but they can either
under or over estimate pain.
 There is also the issue of validity and reliability of their description.
 The only assessment tools available for a patient group with LD and
impaired communication is in the context of palliative care. More
research is required.
Discussion
Health care professionals and carers need more knowledge regarding the
care of PWLD and how to meet their needs.
Conclusion
The audit shows lack of administration of post-ictal analgesia
by carers/relatives in a sample of 25 with LD compared to
those without and highlights a potentially neglected area in
the management of patients with epilepsy and learning
disability and the need for more research in this area.
References
Donovan, J. (2002). Learning disability nurses’ experiences of being with
clients who may be in pain. Journal of Advanced Nursing, 38(5): 458466.
Jenkins, LK. & Brown, SW. (1992). Some issues in the assessment of
epilepsy occurring in the context of learning disability in adults. Seizure
1: 49-55.
Kingston, K. Bailey, C. (2009). Assessing the pain of people with a learning
disability. British Journal of Nursing, 18(7):420-423
Pollard, M. (2007). Is it pain? A framework for identifying pain in people
with learning disabilities. Learning Disability Practice. 10(6):12-14.