Severe and Enduring Eating Disorder or SEED

Severe and Enduring EatingDisorder - SEED

Dr Jaap HamelijnckConsultant Psychiatrist

Anne ClementSupport Worker

Introduction

What is SEEDHow common is itSome examples from our serviceComplicationsHypothesisDiscussion

Definition

1. Chronic eating disorder, consisting on AN,restricting or binging/purging type, EDNOS

2. Being consistently ill for more than 10 years(7years)

3. Undergoing at least one unsuccessful evidence-based treatment

4. having severe impairment across a number of lifedomains

5. having a strong motivation to hold onto AN, andthus a reluctance to continue active treatment.

Prevalence

• “perhaps 40 per million population”• Our team has 5 (out of caseload of 20)

Case 1,

Late fifties with AN all her adult life, lives with herhusband, no children due to AN and not been ableto work for last 15 yearsMultiple admissions, not able to maintain her weightin community over longer period of time, BMI 13Multiple psychotherapy attempts, differentmodalitiesCurrent care plan; short term, planned admissionsfor limited weight restoration

Case 2,

Currently inpatient at general hospital, BMI 1320 year history of AN, chronic relapsing courseDischarged herself last year from specialist in-patient unit because worried she puts on too muchweightLiving at home with parentsRecurrent severe depression

Case 3,

Age 32, 10 year history of AN with binging purgingtype, currently at home BMI about 15Severe osteoporosisRecurrent admissions to general hospital followingcollapse due to dehydration and electrolytedisturbancesSeveral years of therapy, including CAT and NLPBipolar affective disorder

Case 4,

>10 year history of AN with severe OCDSeveral admissions, most recent under section 3after severe malnutrition in community2 children supportive familySugar rich dietExercise and restriction to control weight

Hypothesis; why do people notget better?

Biological/genetic• Predisposition to a particular cognitive style or

personality characteristics (narcissism)• Many mental disorders are chronic/episodic (i.e. OCD)• Co-morbidities make it more likely that the eating

disorder becomes chronic (personality disorders,depression/bipolar, OCD)

• Reward / addictive behaviours (repeated cycles ofstarvation / binging may impact on reward system)

Hypothesis; why do people notget better?

Psychological/social• Trauma and attachment disorders (trust)• Primary/secondary gain (conflict theory,

dependence)• Family (role of illness in family conflicts)• Financial/economical• Fear of becoming an adult (intimacy,

responsibility)• Inability for change (ASD)

Narcissism

Over confidenceHeightened sense of entitlement,SpecialInflated self-importanceDysempathy for othersHypersensitivity to criticismProneness to deflation of self esteemProtect a vulnerable egoCreate a deceptive allure of self-assurance, self-sufficiency orgrandiosityEnvious of others or think others are envious of him/her

Impact on engagement

Nothing is good enoughElevating people followed by rubbishing themNot taking risks, maintaining status quo (protecting self, avoidingfailure)PerfectionistNeed of mastery (I will do it only if I am the best or perfect)Over controlling obsessive stanceAttention seekingUnable to tolerate negative cognitionsAvoiding loss or separation (I will leave you before you leave me)Narcissistic hurt (feeling let down by the slightest criticism)Eating disorder patients increased trait narcissism

A controlled study of trait narcissism in anorexia and bulimia nervosa. Steiger et al.International journal of eating disorders; 1997.

Final Conclusion (Janet Treasurelecture on ASD and AN 2011)

AN & ASD share weak coherence and this may bea risk factor possibly associated with OCPD traits.Starvation increases rigidity & OCPD traits.Starvation decreases social cognition.Starvation decreases emotional regulation.Starvation shifts reward from people onto foodalone.People with acute AN resemble ASDPeople with ASD are at risk of eating disorders

Abnormal Reward processingin anorexia nervosa

Patients with AN have an impaired ability to experience pleasureor reward (anhedonia)Patients’ engagement in illness behaviour is proposed to alleviateand anhedonic or dysphonic mood stateTaste-reward tasks; split into “liking” and “wanting”Wanting is “incentive salience” quality of a stimulus that makes it adesirable and attractive goal, transforming it from a mere sensoryexperience into something that commands attention, inducesapproach, and causes it to be sought out."liking" is a pleasure immediately gained from consumptionAN patients prefer sweet stimuli, HC preference for high fat stimuliAN patients “like” a food but do not “want it”, do not enjoypleasurably stimuli in the same way as HC (partial reward)

Abnormal Reward processingin AN

Aversion toward high fat or sweet foods in consistent with a fear ofweight gainAny process of behavioural reinforcement is an example ofconditioning (linked with dopamine)AN is an illness characterised by behaviours that have becomereinforced in a manner that has become pathological.Development of reward linked behaviours (involving conditioningand reinforcement) for example patients find emaciated bodyimages and self-starvation reinforcing and rewarding.patients engage in starvation to relieve anhedonia and thusdevelop dependence on this mechanism. (reward dysfunction,become “addicted” to starvation)Eating rituals reduce anxiety/fear (negative reinforcement orreduced bad feelings, like OCD)

Reward processing in anorexia nervosa;Neuropsychologia, 50(2012), 567-575

Treatment aims

Focus on keeping people in servicesImproved quality of lifeHarm minimisationAvoidance of further failure experiencesIncreasing motivation levelsManage neuro-cognitive complicationsimproving self-view and lifestyle that has beendominated by illnessImprove physical well being

treating severe and enduring anorexia nervosa: a randomized controlledtrial. Touyz et al, Psychological Medicine (2013), 43, 2501-2511

RCT Touyz et al.

Severe and enduring anorexia nervosa >7years30 individual treatment sessions provided over 8 months inoutpatient setting2 treatment arms; CBT-AN and SSCMCBT-AN protocol by Pike (2003), focus on the cognitive andbehavioural disturbances linked to the core features on AN andmore global including motivational and schema work, weight gainand recovery were not treatment prioritiesSSCM (specialist supportive clinical management) includeseducation, care and support, fostering therapeutic relationship thatpromotes adherence to treatment. Praise, reassurance andadvice. Weight gain not a priority, patients encouraged to improvetheir quality of life and physical well being.

treating severe and enduring anorexia nervosa: a randomized controlledtrial. Touyz et al, Psychological Medicine (2013), 43, 2501-2511

Results of RCT

No difference in increase of BMI (minimal)Improvement in health related quality of life,depression and social adjustment larger for SSCMED symptoms and readiness for change larger forCBT-ANBoth treatment groups demonstrated significantimprovements

treating severe and enduring anorexia nervosa: a randomized controlledtrial. Touyz et al, Psychological Medicine (2013), 43, 2501-2511

Future directions

• Minimal weight restoration• Least harmful principle (binging/purging less

harmful than starvation)• Engagement most important (whole team

engagement)• Managing co-morbidity• Family/carer support• Encourage enjoyment, relieve boredom• “Coaching”

“Coaching” in eating disorders

Help you achieve specific goalsHelp individual reach their fullest potential in lifeCoaching seeks to address the daily challenges of living with EDA coach helps people with ED carry out the practical activities ofdaily life in an organized, goal-oriented, and timely fashionThrough a close partnership, an ED coach helps the client learnpractical skills and initiate change in his or her daily lifeA coach may help an adult with ED:• Maintain focus to achieve identified goals• Translate abstract goals into concrete actions• Build motivation and learn to use rewards effectively

Coaching in ED (continued)

Through regular interactions, coaches learn how the symptoms ofED play out in the daily lives of their clients and then provideencouragement, recommendations, feedback, and practicaltechniques to address specific challengesCoaches ask questions to help the client come up with strategiesand act on them. Examples of such questions are:• What can you do about it?• How can you motivate yourself to take action towards this goal?• When must this action be completed?• What steps have you taken already, and when will you take the

remaining steps?Coaching is not “therapy” but dealing with problems in everydayliving