Plenary 5 Prevention – What Are the Options for …pame.aesnet.org/sites/default/files/Plenary 5 Prevention Options...Plenary 5 What Are the Options for Prevention Now and in the

Plenary 5 Prevention – What Are the Options for Prevention Now and in the Future?

June 25, 2016 1:30 p.m. - 3:00 p.m.

Moderators: Tom Stanton, MPP, Danny Did Foundation and Henry Smithson, M.D., University College Cork

• Family Speaker: Margaret Storey

• Seizure Monitoring and Devices - Tobias Loddenkemper, M.D., Boston Children’s Hospital

• Disclosing and Managing Risk - Jane Hanna, SUDEP Action

• Tools Not Rules for Discussing SUDEP - Jeff Buchhalter, M.D., Ph.D., FAAN, Alberta

Children’s Hospital

• Living With and Managing Epilepsy - Barbara Jobst, M.D., Dartmouth-Hitchcock Medical Center

• Panel Discussion:

Where are the gaps? Are there clear opportunities for engagement between groups on the needs that

are identified from this session? Is there a place for families and generalists to discuss the best way to provide

this information and how it can be used at an epilepsy review to reduce future personal risk?

What can families do now to engage? Are any of these interventions ready for primetime? What would be needed to get them to patients?

2015 AES Annual Meeting www.AESnet.org

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2016 PAME CONFERENCE JUNE 23 ‐ 26 | ALEXANDRIA, VA PARTNERS AGAINST MORTALITY IN EPILEPSY

Plenary 5 ‐What Are the Options for Prevention Now and in the

Future?

Moderators:

Henry Smithson, MD, University College Cork

Tom Stanton, MPP, Danny Did Foundation

JUNE 2016


Disclosures

Henry Smithson Advisor to SUDEP Action

Tom Stanton None


Agenda

• Seizure Monitoring and DevicesTobias Loddenkemper, MD, Boston Children’s Hospital

• Disclosing and Managing RiskJane Hanna, SUDEP Action

• Tools Not Rules for Discussing SUDEPJeff Buchhalter, MD, PhD, FAAN, Alberta Children’s Hospital

• Living With and Managing EpilepsyBarbara Jobst, MD, Dartmouth‐Hitchcock Medical Center


2016 PAME CONFERENCE JUNE 23 ‐ 26 | ALEXANDRIA, VA

pameAESnet.org

Plenary 5 What Are the Options for Prevention

Now and in the Future?

Seizure Monitoring and Devices Tobias Loddenkemper, M.D. Boston Children’s Hospital

Slides Not Available


1


Disclosing and Managing Risk

Jane Hanna OBE

SUDEP Action

JUNE 2016


Disclosure

None


Learning Objectives

• Addressing the relationship between risk communication and potential prevention

• How urgent is this issue ?

• How can we speed up ? An examination of two case studies which illustrate two contrasting pathways to improvement ?

• References in this presentation are simplified. For full references: https://sudep.org/sudep‐action‐pame


A personal reflection

• “Sudden Unexpected Death in people with epilepsy was recognized in the early twentieth century along with identified risks and recommendation for its prevention; however by the 1960’s a myth had gained hold in the medical literature that epilepsy was not fatal…” (Panelli et al 2015, Nashef 1995)

• The culture has changed and will continue to do so

References in this presentation are simplified. For full references https://sudep.org/sudep‐action‐pame


How close are we do cracking it ?

“Educational campaigns regarding sudden infant death syndrome and fires, which kill far fewer Americans than epilepsy, have been widely implemented. We have done too little to prevent epilepsy‐related deaths”

Devinsky et al (2015)

“The majority of people with epilepsy and their families want to know about SUDEP….. If we can determine that SUDEP knowledge improved adherence and self‐management, then education may be the most accessible tool we have to impact mortality in epilepsy” Donner et al (2016)

“In response to calls for disclosure and discussion, many health professionals are unsure how to respond. This suggests that the philosophy of self‐management and informed decision‐making have not been universally adopted into epilepsy care. If this framework was in place it would be a short step to include SUDEP in usual risk communication” Panelli et al (2015)


Framework: Risk Communication

• Core information needed. Weinstein (1999):

• Identity and severity of harm;

We know that people with epilepsy are at a higher risk of fatality(SUDEP, status, accidents, drownings, suicide)

• Likelihood of harm under various circumstances

That the risk of dying increases with known (? overlapping) risk factors –generalised tonic‐clonic seizures; frequency of seizures; sleep seizures; depression (Tomson 2016)

• Possibility of reducing the harm

e.g. medications; seizure interventions, mental health interventions; safety with water (showers; supervised swimming)


2


What do UK families say

An who may have to manage risky seizures

All require awareness, education and confidence

Kennelly & Riesel 2002:• 78 semi‐structured indepth telephone interviews

• <1% knew about risk of death

• 50% reported gaps in service

• Majority (68) supported tailored information on or soon after diagnosis

• Most reported trauma, devastation, guilt, anger, and loneliness

Epilepsy Deaths Register UK (March 2016)

• 527 international reports

• 251 UK semi‐structured questionnaire

• < 46% knew about risk of death

• 37% report gaps in service

https://sudep.org/sudep‐action‐pame


Disclosure

Studies with bereaved families outside UK all supporting communication of risk

• Donner et al, Epilepsia 2016

• Ramachandran 2016 (Canada)

• Rillotta F, Seizure 2015 (Australia)

• North American SUDEP Registry (NASR) 2016

Studies with people with epilepsy also support communication of risk

“The majority of people with epilepsy and their families want to know about SUDEP” Donner et al 2016 (special supplement review)

Guidelines all support communication of risk (with significant variations)• Scotland: SIGN 2015 discussion by an appropriate `specialist’• NICE 2004 èvery professional providing care` should be able to discuss


What hinders disclosure ?

• Many surveys and only a few audits mostly focused on SUDEP all find huge variation in individual practice. Some suggested barriers in the literature:

• Professionals with less experience of epilepsy

• Professionals with less experience in practice

• Lack of experience of SUDEP

• Fatalistic views regarding lack of any measures to prevent

• Concern about negative responses from patients

(Donner et al 2016 (expert review); Stzelczyk 2016)

• Connections between quality measures and improvements identify two contrasting pathways to change through accountability or learning and find measures are not enough. Barriers need to be tackled. These include lack of capacity among organisations and individuals acting in them. (Berwick 2003)


How urgent is disclosure and risk management in 2016 – A UK perspective

An who may have to manage risky seizures

All require awareness, education and confidence

• 42% of epilepsy deaths annually were potentially avoidable in a national clinical audit (1/3 never saw a specialist; 41% had not been reviewed in 2 years before death; 18% cases of drug management was poor)

& <1% with recorded discussion of risk ((Hanna et al 2002)

“While there remains a critical need for more effective treatments, especially ones that affect the actual process of epileptogenesis, the UK audit emphasises that many patients with epilepsy—perhaps most—could benefit substantially if only current knowledge and available therapeutic options were applied effectively”. Pedley T,

Hauser A (2002 Lancet)

Access to report and Lancet editorial: https://sudep.org/sudep‐action‐pame


Accountability and Learning in the aftermath of the National Clinical Audit in UK

• The Audit was powerful and continues to influence in 2016 in UK. It was a catalyst to national guidelines in 2004 which included SUDEP and also helped in case for national financial payment to GPs for annual review of people with epilepsy.

• Guidelines on communication of risk increased documented discussion of risk from less than 1% in 2002 to about 4% in a few centres that did audits/research by 2012. National survey of doctors and nurses found wide variation but issue not a priority for research funding bodies.

• Financial payment to GPs is cut in 2014. In 2015 national editorial on mortality is supported by clinical leaders in the UK Preventing premature deaths in epilepsy. General Practice is the place to start and there is much to do ? (Ridsdale 2015)

• Over this entire period 2002 to 2016 two contrasting pathways have been used to to progress disclosure and management of risk. Pathway 1 is Accountability and Pathway 2 is Learning. Both require overcoming resistance to changing status quo (Berwick 2003)


The NHS Plan• UK studies present picture of people dying out of

contact with specialists, poor adherence, depression and risk not understood in the community (Ridsdale 2011, 2015, Shankar 2014, Sander 2016)

• Emergency admissions - 73% not getting seizure management advice (National Audit Seizures in Hospitals)

• Top 10 causes of premature deaths

What we know about the UK Problem in 2016


3


Which non‐specialists deal with risk ?

People who have seizures Family Carers

Advocates Professional carers

Emergency professionals Police

Maternity Mental health

Community Physicians Community nurses

Coroners Bereaved families

How can people at the front line try to reduce risk if they are not equipped to understand risk ?



Claire: Knowing about SUDEP helps her take her medication

“…I think a lot of people do sort of forget don't really

think twice so I try and be a lot more careful since

reading that, yeah”. 2005www.YOUTHHEALTHTALK.org

• Association between fatality and non‐adherence (Fought 2008). • Not picking up prescriptions has been flagged up in UK (Ridsdale 2011)• ” unwanted and unused medicines” ..reflect inadequate communication between

professionals and patients …” (Nunes 2009)

• People with strong concerns about AEDs were more likely to be nonadherent(Chapman 2014), an issue also flagged up in maternal deaths surveillance in UK

• Opportunities through big data collection to improve risk management (Devinsky2016; Ridsdale 2015)


Pathway 1: Accountability Scotland Fatal Accident Inquiries 2002 & 2011 on SUDEP

Collette

Erin

Christina


Scotland: what happened afterwards ?

• 4% with recorded discussion (345 records) in a specialist epilepsy clinic in Scotland increased to 34% with 67% of new diagnoses with discussion (Ross 2015)

• Government increased funding to epilepsy initiatives including

If you're gonna die, you're gonna die': Young adults' perceptions of sudden unexpected death in epilepsy. Harden, Tonberg, Chin, McLellan, Duncan S (2015)

Study with 27 patients:* 56% fatalistic * 41% with nocturnal seizures thought they were low risk

* 37% reported changed behavior * 26% reporting improved adherence

• SIGN Guidelines 2015 recommend àppropriate range` of `specialists` do face to face counselling àt appropriate time’ but highlight no proven intervention at this time


Pathway 2: Learning Cornwall

Project set out to learn from deaths with input from local clinical champions, the Coroner, a University, and national charity SUDEP Action and UK development group

(Shankar et al 2014 and 2015)

https://sudep.org/sudep‐action‐pame


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2016 PAME CONFERENCE JUNE 23 ‐ 26 | ALEXANDRIA, VA PARTNERS AGAINST MORTALITY IN EPILEPSY 2016 PAME CONFERENCE JUNE 23 ‐ 26 | ALEXANDRIA, VA PARTNERS AGAINST MORTALITY IN EPILEPSY

Cornwall

• About 1% of UK population (60 million). • 2012 local neurology service with 10% documented discussion of risk.• Stakeholders highly motivated by deaths in the community including a highly experienced

local coroner • 48 SUDEPs• Used risk factors flagged in medical literature to check against local deaths. Findings

supported generalized tonic‐clonic seizures; surveillance, increased seizure‐frequency; adherence, surveillance

• 98% positive feedback from clinicians and patients across the care pathway community and specialist adult settings

• UK development group updated to include risks of fatality found in UK surveillance from flags for other causes of epilepsy mortality from general practice population data and additional/overlapping flags for all cause mortality from the general practice research data base –seizures, missed prescriptions; depression; alcohol and national surveillance on maternal deaths (medicines adherence)

• Used in telehealth and community‐based general practice audit (Shankar 2015, 2016)• Steps to prevent SUDEP: the validity of risk factors in the SUDEP and Seizure Safety

CheckList: a case control study (Shankar 2016 Journal of Neurology June 24 2016)


UK DevelopmentLead ‐ Dr Rohit Shankar, Consultant in Adult Developmental Neuropsychiatry, Cornwall Partnership NHS Foundation Trust

Secretariat – SUDEP Action (Hanna, Panelli and Ashby) Wantage, Oxfordshire

Development groupDr Brendan McLean, Consultant Neurologist, The Royal Cornwall Hospitals NHS Trust

Professor Mathew Walker, Professor of Neurology and Clinical Epilepsy, UCL Institute of Neurology

Professor Josemir W Sander, Professor of Neurology and Clinical Epilepsy, UCL Institute of Neurology

Dr Craig Newman, Clinical Psychologist, Plymouth University

Professor Phil Smith, President Association of British Neurologists, University Hospital of Wales

Dr John Craig, Consultant Neurologist, Belfast Health and Social Care Trust

Dr David Cox, Consultant Neuropsychiatrist Cornwall Partnership NHS Foundation Trust

Dr John‐Paul Leach, Consultant Neurologist, Southern General Hospital, Glasgow

Professor Henry Smithson, Professor of General Practice, University College Cork & University of Sheffield (Hon)

Dr Tamsyn Anderson, GP Partner and board member of NHS Kernow, NHS Kernow CCG

Professor Leone Ridsdale, Professor of Neurology & General Practice, Kings College LondonCaryn Jory, Epilepsy Specialist Nurse, Cornwall Partnership NHS Foundation Trust

Mary Parratt, Epilepsy Specialist Nurse, The Royal Cornwall Hospitals NHS Trust

Juliet Ashton, Epilepsy Specialist Nurse, Norfolk

Dr Emma Carlyon, HM Coroner, Cornwall

Simon Lees, Person with Epilepsy, Advisor with lived experience, Derby

Nathan Trevena, Person with Epilepsy, Advisor with lived experience, Cornwall


SUDEP and Seizure Safety Checklist


“A comprehensive and innovative

approach to reduce sudden death in patients with epilepsy.”

British Medical Journal Judges

Recognition as Neurology Team of the Year 2016


Clinical early adopters


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2016 PAME CONFERENCE JUNE 23 ‐ 26 | ALEXANDRIA, VA PARTNERS AGAINST MORTALITY IN EPILEPSY 2016 PAME CONFERENCE JUNE 23 ‐ 26 | ALEXANDRIA, VA PARTNERS AGAINST MORTALITY IN EPILEPSY


Impact on Clinical Care and Practice

• Learning model shows inclusivity and learning from deaths anddemonstrates a successful systematic approach to the challenge of disclosure and management of risk

• Community based multi‐disciplinary collaboration • Whole continuum of care • Updated by UK expert development group as new research

emerges • Validated good practice by national health bodies • Driven and adopted by professional champions in front‐line

services • Inclusive of families making alternative ways of seeking

accountability less necessary after a death• Standardised tools to support professionals • Using technology to speed up change. • Development group will be informed by engagement with adopters • Can work alongside all other initiatives and measures to tackle

mortality



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Tools Not Rules for Discussing SUDEP (The role of guidelines)

JUNE 2016

• Jeffrey R. Buchhalter MD, PhD

• Section of Pediatric Neurology• Alberta Children’s Hospital

• University of Calgary


Disclosures

American Academy of Neurology‐ speaker

Eisai, Ltd‐ consultant

Upsher‐Smith, Labs‐ consultant


Learning Objectives

Following participation in this activity, learners should

be able to understand:

Definition of clinical practice guidelines

Current status of SUDEP guidelines & relationship to

other epilepsy guidelines

Unintended consequences of guidelines

Evidence that adherence to guidelines can improve

outcomes


What is a Clinical Practice Guideline?

Clinical practice guidelines are statements that include recommendations intended to optimize patient care that are informed by a systematic review of evidence and an assessment of the benefits and harms of alternative care options. Jun 1, 2014

https://www.guideline.gov/about/inclusion‐criteria.aspx

The U.S. Congress, through the Medicare Improvements for Patients and Providers Act of 2008, asked the IOM to undertake a study on the best methods used in developing clinical practice guidelines. The IOM developed eight standards for developing rigorous, trustworthy clinical practice guidelines. 2011

http://www.nationalacademies.org/hmd/Reports/2011/Clinical‐Practice‐Guidelines‐We‐Can‐Trust.aspx


National Institute for Clinical Excellence

The Epilepsies, 2004; Clinical Guideline 20

1.3.1 Information‐ “… should be given and have access to sources of information about (where appropriate): SUDEP (16 on list of 20)

1.3.11 SUDEP

Include in literature relating to seizure control

Tailored discussion re: relative risk

Refer to support groups for those affected


Epilepsies: diagnosis and management:

NICE guidelines [CG137]

Published date: January 2012 Last updated: February 2016


2


NICE 2012 NICE clinical guideline 137

1.3 Information

1.3.1 Children, young people and adults with epilepsy and their families and/or

carers should be given, and have access to sources of, information about

(where appropriate):

epilepsy in general

diagnosis and treatment options

medication and side effects

seizure type(s), triggers and seizure control

management and self‐care

risk management

first aid, safety and injury prevention at home and at school or work

psychological issues

social security benefits and social services

insurance issues

education and healthcare at school

employment and independent living for adults


road safety and driving

prognosis

sudden death in epilepsy (SUDEP)

status epilepticus

lifestyle, leisure and social issues (including recreational drugs, alcohol, sexual activity and

sleep deprivation)

family planning and pregnancy

voluntary organisations, such as support groups and charitable organisations, and

how to contact them. [2004]

https://www.nice.org.uk/guidance/cg137/ifp/chapter/sudden‐unexpected‐death‐in‐epilepsy‐sudep

NICE 2012 NICE clinical guideline 137


1.3.2 The time at which this information should be given will depend on the certainty

of the diagnosis, and the need for confirmatory investigations. [2004]

1.3.3 Information should be provided in formats, languages and ways that are suited

to the child, young person or adult's requirements. Consideration should be

given to developmental age, gender, culture and stage of life of the person. [2004]

1.3.4 If children, young people and adults, and their families and/or carers, have not

already found high‐quality information from voluntary organisations and other

sources, healthcare professionals should inform them of different sources

(using the Internet, if appropriate: see, for example, the website of the Joint

Epilepsy Council of the UK and Ireland, www.jointepilepsycouncil.org.uk). [2004]

1.3.5 Adequate time should be set aside in the consultation to provide information,

which should be revisited on subsequent consultations. [2004]



Sudden unexpected death in epilepsy (SUDEP)

1.3.11 Information on SUDEP should be included in literature on epilepsy to show why preventing seizures is important. Tailored information on the person's relative risk of SUDEP should be part of the counselling checklist for children, young people and adults with epilepsy and their families and/or carers. [2004]

1.3.12 The risk of SUDEP can be minimised by:• optimising seizure control• being aware of the potential consequences of nocturnal seizures. [2004]

1.3.13 Tailored information and discussion between the child, young person or adult with epilepsy, their family and/or carers (as appropriate) and healthcare professionals should take account of the small but definite risk of SUDEP. [2004]

1.3.14 Where families and/or carers have been affected by SUDEP, healthcare professionals should contact families and/or carers to offer their condolences, invite them to discuss the death, and offer referral to bereavement counselling and a SUDEP support group. [2004]



Diagnosis & Management of Epilepsy in Children & Young People, A national clinical guideline

4.2.2 DEATH IN EPILEPSYThere is no general consensus on when the risk of SUDEP or other causes of premature death should be discussed with families, but it may be appropriate to discuss this issue with parents of children with symptomatic epilepsies or drug resistant epilepsies with tonic‐clonic seizures.

D. Families should be advised if the child has an increased risk of SUDEP. They can be reassured if the risk is considered to be low.Scottish Intercollegiate Guideline Network, March 2005, pg 14


Diagnosis & Management of Epilepsy in Adults:Section 6: Information for Discussion with Patients & Carergivers

Checklist

General epilepsy information

explanation of what epilepsy is*

probable cause

explanation of investigative procedures

classification of seizures*

syndrome

epidemiology

prognosis*

genetics

Sudden Unexpected Death in Epilepsy (SUDEP)*

http://www.sign.ac.uk/guidelines/fulltext/70/section6.html

* Items marked with an asterisk are considered essential information.


3


Diagnosis & Management of Epilepsy in Adults:Section 6: Information for Discussion with Patients & Carergivers

Checklist

General epilepsy information

explanation of what epilepsy is*

probable cause

explanation of investigative procedures

classification of seizures*

syndrome

epidemiology

prognosis*

genetics

Sudden Unexpected Death in Epilepsy (SUDEP)*

http://www.sign.ac.uk/guidelines/fulltext/70/section6.html

* Items marked with an asterisk are considered essential information.

> 10 years old


Began in 2010

International membership on workgroup

Collaboration of AAN, EFNS, AES

Led by Cynthia Harden, M.D.

American Academy of Neurology SUDEP Guideline


Evidence‐based guideline: Sudden unexpected death in epilepsy (SUDEP) incidence rates and risk factors

Report of the Guideline Development, Dissemination, and Implementation Subcommittee of the American Academy

of Neurology

Cynthia Harden, Torbjorn Tomson, David Gloss, Jeffrey Buchhalter, Helen Cross, Elizabeth Donner, Jacqueline

French, Anthony Gil‐Nagel, Dale Hesdorffer, Philipe Ryvlin, W. Henry Smithson, Mark Spitz, Theodore Walczak


What is the incidence rate of SUDEP in different epilepsy populations?

Are epilepsy patients with a specific risk factor at higher risk of SUDEP than epilepsy patients without this specific risk factor?

AAN SUDEP Guideline‐ Questions Asked


In 2010, the American Academy of Neurology’s (AAN) Guideline Development,

Dissemination, and Implementation Subcommittee convened a panel of experts to

develop this guideline (appendix X). A systematic literature search was performed in

all languages in November 2010 by an independent librarian. Two databases

(MEDLINE and EMBASE) were searched from earliest available to November 2010.

An identical search was subsequently performed by the guideline panel to include

articles published from November 2010 to April 2015. Two panel members reviewed

each of the resulting 1132 abstracts to establish whether an article met the inclusion

criteria (all languages, RCT, cohort, case control, case series, n > 10). 372 articles met

these criteria were reviewed in full‐text and classified by two GDDI committee panel

members for quality of evidence based on the AAN therapeutic classification

scheme rating risk of bias based on study characteristics.

AAN SUDEP Guideline‐ DESCRIPTION OF THE ANALYTIC PROCESS


AAN SUDEP Guideline‐Manuscript in Preparation

JournalAAN SUDEP

Harden, Tomson, French


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Unintended Consequences


Better care call after epilepsy deathBBC World News Friday, 27 September, 2002, 17:26 GMT 18:26 UK

Patricia and Jeanette Findlay called for action

A 17‐year‐old girl who died from an epileptic seizure could still be alive if she had been given proper treatment, a sheriff has said. Colette Findlay, from Springboig, in Glasgow, died in 1998 after she had a severe epileptic seizure in bed.

A fatal accident inquiry into her death highlighted failures by health professionals and the disclosure led to calls for improvements from her family.

Sheriff James Taylor, in his written findings, concluded that Colette's death could have been avoided if "a catalogue of errors" had not been made.

Sheriff Taylor said patients with an epileptic condition should be provided with a coordinated care plan.


• Two SUDEP deaths, 2006 ‐2009, 15 & 19 years old

• Findings

– The reasonable precautions whereby death would have been prevented were … if name and her parents had been informed of the risk of SUDEP

http://www.scotland‐judiciary.org.uk/10/794/Fatal‐Accident‐Inquiry‐into‐the‐deaths‐of‐Erin‐Casey‐and‐Christina‐Fiorre‐Ilia

2013


http://www.scotcourts.gov.uk/opinions/2011FAI40.html

2013


Summary Regarding the Legal Aspects of SUDEP Disclosure

• Thus far, there have been no monetary awards or

restriction of privileges

• The “charges” are best considered within the

realm of the “professional” rather than “legal”

• Guidelines are best used as “tools not rules”* to

allow for variation in care required by individual

patients JRB personal opinion* From http://www.scotcourts.gov.uk/opinions/2011FAI40.html


What is the Evidence that “Organized” Care Makes a Difference

Journal of Quality and Safety 2006 (32) 11 , 621‐27

The 100 000 Lives Campaign: Setting a Goal and a Deadline for Improving Health Care Quality

Berwick DM. JAMA 295:324–327, Jan.18, 2006.


5


More Evidence

N = 15,000 2 yrs Mortality

reduced 6.2% 930 people

34/36 articles reduced morbidity or mortality


How Long Will It Take? J Noebels (PAME 2016)

Knowledge

Guidelines

Implementation

ADVOCACY



Guideline(s) provide an evidence‐based framework

for discussing SUDEP with patients, families and

caregivers

Providing information regarding risk factors will

hopefully result in behaviors that lower the risk of

SUDEP occurring

Providing an opportunity for advocacy to advance

care2016 PAME CONFERENCE JUNE 23 ‐ 26 | ALEXANDRIA, VA PARTNERS AGAINST MORTALITY IN EPILEPSY


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Living with and Managing Epilepsy

Barbara C. Jobst, MDProfessor of Neurology

Dartmouth‐Hitchcock Epilepsy Center

Geisel School of Medicine at Dartmouth

Principle Investigator “Managing Epilepsy Well Network” (MEW)

JUNE 2016


Disclosure

Neuropace, Inc.Defense Advance Research Agency (DARPA)Center of Disease Control

Research, ConsultingResearch

Research


Learning Objectives

Following participation in this activity, learners should be able to:• Emphasize the importance of self‐management• Educate about self‐management programs in epilepsy• Be knowledegable about the importance of depression and

cognitive problems in epilepsy • Be knowledgeable how to treat epilepsy related depression

and memory


Barriers to a life with epilepsy

Patients‘ worries1. Unexpected seizures2. Driving3. Memory4. Overall seizure control5. Burden to family6. Future7. Injury during seizures8. Medication Side effects9. Keeping a job10. Mood11. Having to take medication12. Not being able to do things alone

Doctors’ worries1. Unexpected seizures2. Overall seizure control3. Driving4. Medication side effects5. Injury during seizures 6. Having to take medications7. Burden on family8. Future 9. Medical Costs10. Keeping a job11. Embarrassment of having seizures12. Memory

McAuley, 2010


Self‐management

2012 Institute of Medicine Report on the public health dimensions of epilepsy:Need for self‐management programs and research

From KYOH: Know your own health, UK

“Self‐care”


Self‐management in Epilepsy‐ Some facts

Can be measured with Adult Epilepsy Self‐Management Measurement Instrument (AESMMI) (Escoffery et al. 2015)

• Females reported higher scores for medication management and information seeking.

• White had higher scores for treatment seeking behaviors. • Higher education levels predicted more information seeking and

safety behaviors.• Higher incomes correlated with information seeking, wellness,

information, symptom and treatment behaviors.• Patient with more years of epilepsy reported more stigma

management behaviors. • Increased seizure frequency correlated with lower lifestyle,

treatment and symptom management.


2


The Managing Epilepsy Well Network (MEW)

YESS!

Website: http://web1.sph.emory.edu/ManagingEpilepsyWell/

8 Collaborating Sites

Mission: To advance the science related to epilepsy self‐management by facilitating and implementing research, conducting research in collaboration with network and community stakeholders, and broadly disseminating the findings of research.

The CDC responded to the call with establishing

Dilorio et al., 2010






McAuley, 2010


General disease management

Focused on medication, stress, sleep, tracking of seizuresat www.webease.orgImproved medication adherence and self‐efficacy (Dilorio et. al , 2011)

Clinic‐based decision support tool to enhance patient‐provider communication (Begley et al. 2015)

Programs under development and evaluation

PAUSE = Personalized internet Assisted Underserved Self‐management of Epilepsy (Univ. of Illinois)

A self‐management intervention+ behavior modeling for people with epilepsy and a history of negative health events. (Case Western)

YESS!YESS!Youth Epilepsy and Successful Epilepsy Self‐Management:(University of Minnesota)


Depression – Facts

• Patients with epilepsy are twice as likely to report depression and three times as likely to report anxiety than the general population (Kobau et al., 2006)

• About one third of patients with epilepsy suffer from depression, more in patients with uncontrolled seizures (Seminario et al., 2009)

• Moderate evidence for efficacy of antidepressants (SSRI); lacking larger randomized controlled trials (Maguire et al. 2014)

• There is a bi‐directional relationship between depression and epilepsy (Kanner et. al, 2011)


Depression‐ Self management

Using Practice and Learning to Increase Favorable Thoughts

Delivery of mindfulness‐based cognitive behavioral therapy by telephone and internet improving depression in epilepsy (Thompson et al., 2010)

Currently tested in African‐American and Hispanic population

Mood & cognitive management; peer‐lead for urban and rural adults Improved self‐efficacy, self‐management and quality of life (Fraser et al. 2015),

0

5

10

15

20

25

30

35

40

Pretest Interim

Beck’s Depression Inventory

Phone Tx

Web Tx

Waitlist

p=.0001**

Home‐based depression treatment using the collaborative care model) (Chaytor et al, 2011)


3





McAuley, 2010

????


Memory‐ Facts

• 82% of patient with drug‐resistant temporal lobe epilepsy cognitive problems in at least one domain (memory, language, executive function), 21% in all three domains (Rai et al., 2015)

• Children have a similar rate of impairment (Menlove et al. , 2015)

• Not dependent on seizure frequency (Pacagnella et al. 2015)Verydepressed

Goodmemory

Jobst et al., 2011

• Little correlation between subjective and objective memory unless related to word finding difficulties (p<0.001) or depression (p<0.05) (Sawrie et al. 1999)

• Patients rate memory difficulties more bothersome than seizures (Escoffery et al. 2015)

• Depression and memory are correlated• AED have an influence (Escoffery et al. 2015, Sawrie et. al,

1999)


• Education about memory problems

• Program delivered for the phone

• Memory coach guides problem solving therapy for memory problems

• Domains: Disease related skills, organizational skills, social skills

• Patient comes up with own solution for problem and exercises it until the next phone call

• Education about memory strategiesCaller et. al., 2013, 2015

Measure

Quality of Life Qolie‐31 p=0.05

Cognition incl. memory RBANS p=0.009

Attention subscore P=0.005

Depression PHQ9 NS

NDDI‐E NS

Executive function BRIEF‐A NS

Now being distributed to a larger population in different centers (HOBSCOTCH 2) and evaluated for cost‐effectiveness


Weight and Diet‐ Facts

• AEDs influence weight (Ben‐Menachem, 2007)

• Ketogenic diet is an effective treatment of epilepsy, mainly in pediatric epilepsy: 38‐67% have > 50% seizure reduction (Martin, 2016)

• Adverse Events: Non‐adherence leads to treatment failure, GI‐symptoms, weight loss (Kossoff et. a; 2007)

• Ketogenic diet also effective for adults but difficult to follow (Nei et al. 2004)

• Modified diets such as Atkins diet, modified Atkins diet are also effective but dependent on Carbohydrate content (Kossoffet al., 2003)

• Ketogenic diet may improve cognition and mood‐disturbed behavior (Iff et al. 2016)


Other important issues

• Employment• Driving• Relationships• Education• Socio‐economic Status• Reproduction• Stigma


4

The need for evidence

Reported improvement in working memory

And reimbursement venues for evidence‐based cognitive behavioral therapies and self‐management



• First point• Consider depression in epilepsy• Address memory problems in epilepsy

• Second point• Consider supporting self‐management for patients in form

of self‐management programs• Discuss dietary options



pameAESnet.org

Documents

Plenary 5 Prevention – What Are the Options for …pame.aesnet.org/sites/default/files/Plenary 5 Prevention Options...Plenary 5 What Are the Options for Prevention Now and in the