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 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.

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, W- weekly. PWLD(n=25)PWOLD(n=60) Age range, mean,median Min=18,max=60 Mean=37.6, Median=40 Min=17, max=65, Mean=34.8, median=31.5 GenderM=16(64%) & F= 9 (36%) M=24 (40%) & F= 36 (60%) Responder15=Carer,6=Parent, 4=Other, Relative (s), 60=Patient Lifestyle separate items 10=RH,15= P30=OD,20=ND, 10=W History of GTCS17 (68%)31 (52%) History of CPS8 (32%)29(48.3%) Multiple seizure types23 (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 amongst those who took analgesia N/AEvery seizure: 26/35 (74%) Sometimes: 9/35 (26%)

Seizure frequency PWLD: total 25 FrequencyNO% Monthly28 Weekly624 Daily1768

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 PWOLDSSC mean, median, range PWLD SSC Mean, Median, range CPS 29 (48%)M=13 Mo=14 R=18 Me=14 8 (32% ) M=15 Mo=14 R=19 Me=15 GTCS 31(52%)17 (68%)

Seizure frequency PWOLD: total 60 FrequencyNO% Yearly23 Quarterly1017 Monthly1932 Fortnightly58 Weekly1525 Daily915

Time of Pain in PWOLD Time in mins/hour Number % TOTAL35100

Duration of Pain in PWOLD Time in mins/day Number of PWOLD % 1 day min720 3 days823 2 days mins13 720mins26

Site of pain reported by PWOLD SITEFrequencyPercentage Head617% Lower limb514% Upper limb514 % Back26 % Stomach26 % More than one site/whole body 1543 %

The type of analgesia use among PWOLD during severe seizures Type of Analgesia PWOLD=60 LD=25 Paracetamol150 Ibuprofen100 Either100 None25

If analgesia taken how often in PWOLD No of People- Short day (1) No of People- Long days (2-3) GTCS8 (22.9%)14(40%) CPS7(20%)6(17%)

DISCUSSION Seizure frequency and severity was significantly greater (p< 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): Jenkins, LK. & Brown, SW. (1992). Some issues in the assessment of epilepsy occurring in the context of learning disability in adults. Seizure 1: Kingston, K. Bailey, C. (2009). Assessing the pain of people with a learning disability. British Journal of Nursing, 18(7): Pollard, M. (2007). Is it pain? A framework for identifying pain in people with learning disabilities. Learning Disability Practice. 10(6):12-14.