Managing people with epilepsy & Intellectual Disability (ID) The current UK context

Transcription

1 Dr Rohit Shankar MBE, MBBS, DPM, FRCPsych Managing people with epilepsy & Intellectual Disability (ID) The current UK context Consultant Neuropsychiatrist & Clinical Director (ID Services) Hon. Associate Clinical Professor (Senior Clinical Lecturer) Academic Secretary & Executive Committee member (ID Faculty)

2 Many of you know this story.. The blind men and the elephant. Poem by John Godfrey Saxe (Cartoon originally copyrighted by the authors; G. Renee Guzlas, artist).

3 Now lets substitute Epilepsy care for people with ID is fragmented What do we know of Epilepsy! They are the experts, they know what to do! Its not my problem! They must be working to current good practice! The patients & families complaining what do they know! People die of epilepsy sad but not my problem

4 Coming a full circle the UK context Local communities s Connor Sparrowhawk case Realigning of care post 2013 Psychiatric specialism in ID Access to full MDT People with ID & Epilepsy Centres of excellence Available neurologists Hospital based Resources Post code lottery Over represented health needs Epilepsy/MH/CB/Dementia Mainstreaming to Neurology No discussion - treat epilepsy but not the individual

5 The problem: There is no UK wide NHS Plan to reduce the epilepsy burden Number of deaths rising yearly All causes of deaths before the age of 70 60% of deaths in epilepsy can potentially be prevented Asthma 25%

6 1,187 DEATHS (2013) 5.3 million people in UK with Asthma 1,255 DEATHS (2013)

7 Impact on the NHS 63% with no contact with health services 73% of first-seizure patients are not given seizure management advice 1.5 Billion (Yearly cost of Epilepsy) 60,000 additional emergency attendances 40,000 epilepsy-related hospital admissions National Audit of Seizure management in Hospitals (NASH) 2012 & 2015

8 Crude Context Seizures 2 nd most common reason for premature mortality in ID Misdiagnosis rates of PWE and ID Mild ID 8-10% Moderate profound ID - 50% 60% of people with ID and epilepsy will be treatment resistant LeDeR Deaths - 43% with epilepsy - 31% had had a seizure in the previous 5 years SUDEP 3-9 times higher risk epilepsy prevalence % death rates >GP treatment resistance % PWE PWE -ID 1. Laxer KD, et al. Epilepsy & Behavior 2014;37: McGrowther CW, et al. Seizure 2006;15: ID, intellectual disability; PWE, people with epilepsy

9 Hospital Admissions which should not happen: for Seizures

10 Risk of epilepsy in autism and ID Autism alone Autism +ID Autism +ID +CP 10 0 Age 5 Age 10 Tuchman & Rapin Lancet Neurol 2002;1:352 8

11 ASD subtypes & epilepsy (Tuchman & Rapin 2002) Core autism (autistic disorder, AD) About 30% show AR About 30% develop a clinical epilepsy by adolescence Asperger syndrome ~5-10% develop epilepsy in early childhood Pervasive Developmental Disorder NOS Increased risk of epilepsy linked to severity of brain dysfunction Disintegrative Disorder up to 70% develop epilepsy Rett syndrome >90% develop epilepsy

12 Hara 2007 Hara Brain & Development 2007;29:

13 What we want Help the individual and not the condition Better outcomes to general population Recognition of the unique characteristics & challenges Consistency of care Person centred care Inclusion in research

14 The development of standards and Enhance diagnosis, pathways to investigation Guidelines for treatment Improve links among different stakeholders between primary care, MDT, social services and patient centred clinical consultations initiatives

15 People with epilepsy and ID wait longer for routine investigations. Care for people with epilepsy and intellectual disability (ID) is fragmented. People with epilepsy and ID often have complex needs and multiple co-morbidities.

16 Interaction between various stakeholders International League Against Epilepsy present Epilepsy Charities NHS England Commissioning General Practice Learning Disability Teams hospitals - Neurology & ED Paramedics UNIFORM PERSON CENTRED HOLISTIC CARE Royal College of Psychiatrists Intellectual Disability Faculty Epilepsy Specialist Nurses

17 Why should a psychiatrist working with people with ID have a knowledge of epilepsy?

18 Benchmarked to NICE College Report 203

19 LD epilepsy management isn t scary

20 Current prescribing practices in ID Current approach is this working? Can strategies that work in the general population apply directly to ID? Are we tailoring available AEDs using a person-centred approach? AEDs, anti-epileptic drugs

21 Side effects: behavioural, mental, and physical Relevant co-morbidities Evidence base of individual AEDs Doran Z, et al. Eur J Neurol 2016; 23: AEDs, anti-epileptic drugs

22 Conclusions Concept of ID nebulous all lumped into one! No specification of the nature or degree of ID Poor descriptions of co-morbidities, such as PDD/autism the evidence base for safe use is extremely weak No concept of what is Challenging Behaviour 1. Doran Z, et al. Eur J Neurol 2016; 23: ID, intellectual disability; PDD, pervasive developmental disorder; AEDs, anti-epileptic drugs

23 Some assertions based on boring clinical experience with some evidence based justification...

24 1a 1b Grading of evidence Evidence from systematic reviews or metaanalysis of RCTs Evidence from at least one RCT 2a Evidence from at least one controlled study without randomisation Evidence from at least one other type of quasi experimental study 3 Evidence from non-experimental descriptive studies, such as comparative studies, correlation studies and case control studies 4 Evidence of post study analysis of a section of ID population following large study sample studies 5 Evidence from expert committee reports or opinions and/or clinical experience of respected authorities

25 Traffic light system The traffic light system couples both clinical experience, evidence of efficacy and side effects to provide a recommendation Only use in exceptional circumstances Considered if benefits outweigh risks or 2 nd line Needs to be considered as first line treatment

26 Phenytoin none none No direct evidence of tolerance or efficacy V Unsuitable due to Multiple drug interactions behavioural side effects needs for regular blood monitoring Any consideration of Phenytoin needs a comprehensive discussion with patient of the benefits and risks of using this medication weighed in balance to other alternatives, efficacy and side effects.

27 Levetiracetam Kelly et al Brodtkorb et al 2004 N = 64 Observational study of adjunct LEV 38% seizure free n =184 ID n = 56 equally effective Improved seizure control in majority and carer satisfaction Study focus was on behaviour - worse in ID III Pros- Does not interact with other commonly prescribed medication in people with ID Has been well studied in the general population and is considered 1 st line medication Cons Needs more studies in ID Concerns exist about behavioural and mental side effects

28 Examples of other material in CR206 AEDs in ID based on cognitive and behavioral complications MHRA Categories Levels of AED drug interaction and potential serious clinical consequences* Significant antipsychotics associated with seizure risk compared to Risperidone** Antidepressants and seizure propensity*** *adapted from Johannessen and Landmark 2010 **Wu et al; 2016 ***UK Medicines Information (UKMi) pharmacists for NHS healthcare professionals

29 Sometimes you have to make a plan.

30 How we approach Seizures Outcomes Treatment Safety

31 Safety is everyone s business Genetics Diagnosis Infections Sleep/Constipation Intensity Frequency Medication Rescue plans Biological Seizure Factors Environmental Psychological Residence Checks and surveillance Baths/Showers Beds/sleep Training Psychiatric comorbidity Mental disorder such as Alcohol, Bereavement, Drugs etc.

32 WHY? Seizures Quality of Life Safety

33 The Final Picture!