Audit of analgesic use post-ictally in epilepsy in adults with and without learning disabilities.

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AUTHORS Catherine Adadevoh¹, Antonio Valentin²,
Mahmoud Abeidah³, Lina Nashef NHS Southwark,
²Department of Clinical Neuroscience KCL-IOP,
³University Hospital Lewisham, 4Department of
Neurology, Kings College Hospital
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TOPIC

• Audit of analgesic use post-ictally in epilepsy
  in adults with and without learning disabilities.
  

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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).

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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.

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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
  post-ictally 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.

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Objectives

• To explore whether carers believe they can
  identify pain in people with learning
  disabilities

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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.

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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).

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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

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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.

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M-male, F-female, RH-residential home,
R-relative, P-parent, OD-occasional drink, ND-no
drink, W-weekly.

PWLD(n25) PWOLD(n60)
Age range, mean,median Min18,max60 Mean37.6, Median40 Min17, max65, Mean34.8, median31.5
Gender M16(64) F 9 (36) M24 (40) F 36 (60)
Responder 15Carer,6Parent, 4Other, Relative (s), 60Patient
Lifestyle separate items 10RH,15 P 30OD,20ND, 10W
History of GTCS 17 (68) 31 (52)
History of CPS 8 (32) 29(48.3)
Multiple seizure types 23 (92) 28 (47)
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Mann-Whitney test use of pain killer
(P.000) Statistical difference btw PWLD/PWOLD
Use of analgesia after more severe seizure type PWLD N25 PWOLD N60
0 (0) 35/60 (58)
Frequency of use amongst those who took analgesia N/A Every seizure 26/35 (74) Sometimes 9/35 (26)
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Seizure frequency PWLD total 25
Frequency NO
Monthly 2 8
Weekly 6 24
Daily 17 68
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Types of seizure assessed in each group (the most
severe) and seizure severity scale (SSC) SSS for
PWOLD with pain mean 13, mode14, range18
median14. SSS for PWLD with pain mean15,
mode14, range19 median15. PWLD were more
likely to have GTCS than the PWOLD but not
statistically significant.
Seizure types PWOLD SSC mean, median, range PWLD SSC Mean, Median, range
CPS 29 (48) M13 Mo14 R18 Me14 8 (32 ) M15 Mo14 R19 Me15
GTCS 31(52) 17 (68)
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
16
Time of Pain in PWOLD
Time in mins/hour Number
.10 29 83
1 5 14
120 1 3
TOTAL 35 100
17
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
18
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
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The type of analgesia use among PWOLD during
severe seizures
Type of Analgesia PWOLD60 LD25
Paracetamol 15 0
Ibuprofen 10 0
Either 10 0
None 25 25
20
If analgesia taken how often in PWOLD
No of People-Short day (1) No of People- Long days (2-3)
GTCS 8 (22.9) 14(40)
CPS 7(20) 6(17)
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DISCUSSION

• Seizure frequency and severity was significantly
  greater (plt 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

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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

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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 individuals
  behaviour can go unnoticed.

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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.

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Discussion

• Health care professionals and carers need more
  knowledge regarding the care of PWLD and how to
  meet their needs.

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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.

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References

• Donovan, J. (2002). Learning disability nurses
  experiences of being with clients who may be in
  pain. Journal of Advanced Nursing, 38(5)
  458-466.
• 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.