Specialised Services

London Strategic Clinical Networks

Sugar and spice: Diabetes and eating disorders T1ED challenges 11 November 2014

Date


Welcome and introduction Co-chairs  Dr Frances Connan, Clinical Director Vincent Square Eating Disorders Service  Dr Stephen Thomas, Clinical Director London Diabetes SCN

Housekeeping • • • •

• • • •

Site info (no fire alarm planned, toilets, water) Photos Follow up email Twitter hashtag #t1ed Join the conversation! @nhslondonscn Wifi name: FH Conferencing Password: @BritishQuakers Lucozade and glucose tablets available London’s care pathway for diabetes: Commissioning recommendations for psychological support • http://bit.ly/mh-diabetes

Charity partners • • • •

Diabetics with Eating Disorders (DWED) Diabetes UK Mind Young Minds

Please visit their stands at the back of the room!


Setting the scene  Rt Hon George Howarth MP Labour MP for Knowsley  Jonathan Valabhji, National Clinical Director for Diabetes and Obesity NHS England

A Tale of Two Patients

The good, the bad and the negligent

Jacq Allan, Director Diabetics with Eating Disorders (DWED)

Introductions Clara* 23 • Diagnosed as a child • Struggled in Paediatric care after being told by DSN she was ‘getting fat’ • Fear of attending clinic thereafter

* identities have been changed

Sofia* 34 • • • •

Ballet dancer Diagnosed as an adult History of previous anorexia Realised quickly that insulin omission led to weight loss

Flashpoint – the GP Clara • Sought help from the family GP and was told ‘it’s just a phase’ • Undiagnosed need for psychological support • Changed GP practise • 18 month waiting list after being referred for Cognitive Behavioural Therapy

Sofia • Referred to the Diabetes Clinic • Urgent referral sent immediately to the local Eating Disorder Unit • Communications to both Eating Disorders and Diabetes teams

Flashpoint –emergency department Clara Frequent ED attendance 5 admissions in 6 months No mental health assessments Blood sugar regulated via sliding scale • Reported that the nurses ridiculed her – a DWED trustee confirmed this via an audio recording from the ward. • Described her as ‘a non compliant’ diabetic • Discharged with no follow up • • • •

Sofia • ED attendance • Discharged with no admission • Follow up appointment with Consultant and DSN arranged for a week after discharge.

Flashpoint – diabetes clinic Clara

Sofia

• Low frequency of appointments • Built a good rapport with DSN • Lost contact with clinic after the DSN left • Behaviour of the clinical staff impacted patient’s confidence - Was told ‘there was only so much they could do if she was unwilling to be compliant’ - Her consultant made her feel ‘guilty, stupid & small’

• Flexible appointments with DSN - often this was once or twice a week • Followed up with phone calls when appointment frequency tailed off • Positive reinforcement to keep working towards goals rather than chastising her when she slipped up • Signposted to support networks

Flashpoint – the eating disorder clinic Clara – Inpatient • • •

• • •

Given anorexia feeding plan despite a normal BMI Only diabetic patient ever treated on the unit Vomiting due to Gastroparesis not bulimia - Given more food leading to dangerous hypos after each episode Advocates involved (MIND and DWED) but consultant refused to engage Nurses told her ‘she wasn’t special and that she had to get over herself’ (overheard by DWED trustee) Premature self discharge at 3 weeks

Sofia – Outpatient • •

•

•

Sought external support for diabetes care Personalised diet plan created by patient, DSN and ED team (included a plan for when she binged, didn’t want to inject insulin or restrict caloric intake) Regular Care Planning Appointments involving a DWED advocate, DSN and ED Dietician Cared for in the Eating Disorder service for 18 months

Flashpoint - Aftercare Clara • Completely lost faith in the system • Relapsed after discharge within 1 week • Attended ED • Died within 1 month

Sofia • Regular follow up by diabetes clinic particularly DSN • Maintained support network • Over 2 years of successful recovery • HBA1c > 9 on an insulin Pump • Runs own business • Single mum of 2 young girls

Double trouble diabetes and eating disorders Prof. Janet Treasure www.eatingresearch.com

Diabetes Research Network Type 1 Diabetes and Eating Disorders writing group • •

• • • • • • •

Research Ideas to improve management of T1DM and eating disorders King’s Health Partners: Professor Khalida Ismail (liaison psychiatrist) Dr David Hopkins (diabetologist), Professor Janet Treasure (eating disorders psychiatrist), Dr Anne Doherty (liaison psychiatrist), Dr Emma Smith (clinical psychologist), Dr Simon Chapman (paediatrician) University College London Partners: Dr Miranda Rosenthal (diabetologist), Professor Peter Hindmarsh (paediatric epidemiologist), Dr Deborah Christie (consultant clinical psychologist) Oxford University: Dr Katharine Owens (diabetologist), Dr Pamela Dyson (senior dietician) Cambridge: Dr Mark Evans (diabetologist), Professor David Dunger (paediatric diabetologist), Dr Carlo Acerini (paediatric diabetologist) Cardiff: Professor John Gregory (paediatric diabetologist) Newcastle: Dr Sylvia Dahabra (eating disorders psychiatrist), Dr Nicola Leech (diabetologist) Sheffield: Professor Simon Heller (diabetologist) Capacity building: we are including Dr Carol Kan (ST4 in psychiatry and BRC Preparatory Fellow, King’s Health Partners) as a co-worker for career development.

Talk Map • How are we doing for current treatments for diabetes and eating disorders? • What is the theoretical rationale for eating disorder treatment? • How can we adapt this model to explain the two fold increase in eating disorders in people with diabetes? • What targets should we treat?

ED Treatment Outcome (Custal et al 2014)

T1DM patients (50%) stopped treatment significantly earlier (χ2 = 4.50, df = 1, p = .034).

CURRENT EATING DISORDER TREATMENTS ARE INEFFECTIVE AND ASSOCIATED WITH HIGH DROP OUT

MRC Framework for the Development of Complex Interventions

MODELS FOR EATING DISORDERS IN THE GENERAL POPULATION

Causal ED Risk Factors

Genes and Environment: Interactions Bulimia Nervosa 3X

8X

0 7X

3X

20 2X

7X

Anorexia Nervosa

Anxiety Anxiety

What is the evidence for genetic factors?

Genetic Factors • Heritability 58-88% (Bulik et al., 2000) • OCPD temperamental traits (Lilenfeld et al., 1998) • Association impulsivity ADHD (BED) and compulsivity , ASD (AN). • Association depression anxiety. • Association with Paediatric Autoimmune Neuropsychiatric Disorders. (Pisetsky 2014; Fetissov S 2005) and other autoimmune disorders (Raevouri et al. 2014) • Anorexia nervosa negatively associated BMI (0.3) & insulin resistance (0.3)

What are the environmental factors?

Tension of Fat Talk & Obesogenic Environment. (Classical Conditioning) Praise for not Eating

Fat Talk

(Nichter & Vuckovic 1994 Sharpe et al 2013)

Criticism Eating

Food=Negative emotions

Vicarious learning Parental eating disorder (Van den Berg 2010,Rodgers & Chabrol 2009)

Social contagion

Allison 2013)

High sensitivity to judgement and rank

Not Eating

Teasing, criticism, bullying eating shape weight (Brixel et al 2012, Menzel et al 2010)

Idealisation Thinness/ Fitness- Stigma fatness (Evaluative Conditioning)

Valuation of Emaciation

Food=fat

+

Stigmatisation of Fat

The meaning of food/ eating

Body dissatisfaction (Stice & Shaw 2002, Jacobi et al 2004)

Social comparison (Myers &

Perfectionism (Wade & Tiggemann 2013)

Not Eating

Crowther 2009 ; Van den Berg et al 2002) Fitzsimmons-Craft, et al

2014)

Maintaining Factors

Transdiagnostic theory of eating disorders (Fairburn et al 2003)

CORE LOW SELF-ESTEEM Over-evaluation of control over eating, shape or weight

PERFECTIONISM

L I F

Strict dieting

E

(Achieving in other domains)

MOOD INTOLERANCE

Binge eating

Compensatory vomiting/laxative misuse

Features of under-eating + low weight

HOW DOES THE MODEL FIT FOR T1 DIABETES MELLITUS.

So why an increased risk of ED in T1DM? •

Daneman et al. (1998) - 3 diabetes-specific aspects that increase risk of ED in people with T1DM:

1.

Weight Gain – increases body dissatisfaction, triggering dieting, bingeing and compensatory purging behaviour. Dietary Restraint in nutritional management of IDDM – may increase salience of eating concerns and its control, triggering eating disturbed behaviour Insulin Misuse – highly effective yet dangerous weight loss strategy at disposal. Strong maintaining factor.

2.

3.

The transdiagnostic theory of eating disorders Defective self -DM

CORE LOW SELF-ESTEEM PERFECTIONISM Over-evaluation of control over eating, shape or weight

L I F

Strict dieting

E

MOOD INTOLERANCE

Binge eating




CBT-E: Formulated from the transdiagnostic theory of eating disorders Defective self -DM

CORE LOW SELF-ESTEEM PERFECTIONISM

Focus on weight & eating in diabetes L management

Over-evaluation of control over eating, shape or weight

I F

Strict dieting

E

MOOD INTOLERANCE

Binge eating




Eating Disturbances in young people with T1DM (Wilson et al., 2014) • N=50 Aged 14-16 (60% female) • Eating disordered attitudes associated with higher BMI-z, poorer glycaemic control, and lower self-esteem. • Eating disordered behaviour associated with lower self-esteem and higher diabetes-related family conflict.

– Glycaemic control and BMI differences did not reach significance (but low incidence of ED behaviours)

• Higher body mass indexes (BMIs) impact on girls more than they do on boys.

A father’s record of 22 year old daughter’s health

CBT-E: Formulated from the transdiagnostic theory of eating disorders Defective self –



I F E

Interpersonal conflict/concern of diabetes management

MOOD INTOLERANCE


Strict dieting

Binge eating







I F E



Strict dieting

Low mood, anxiety

MOOD INTOLERANCE

Binge eating







I F E



Strict dieting

Low mood, anxiety

MOOD INTOLERANCE

Binge eating




Reduced insulin

Dysfunctional Perfectionism Definition: “over-evaluation of the determined pursuit of personally demanding, self-imposed standards, despite adverse circumstances” (Shafran, Cooper & Fairburn, 2002)

• At the core of eating disorders • DP significantly associated with heightened preoccupation with weight (Smith et al., (in press), Pollock-Barziv & Davis, 2005) and dietary restraint (Smith et al., in press) in young people with T1DM

– But, DP NOT associated with eating disturbed behaviours or glycaemic control

• Crits – small N and subjective self-ratings of eating disorders




I F E



Obsessive compulsive personalityFrustrate by complexity of DM

Strict dieting

Low mood, anxiety

MOOD INTOLERANCE

Binge eating




Reduced insulin

Disinhibited eating and insulin/glucose management (Merwin et al 2014) • N=276 type 1 diabetes completed an online survey • Hypothesis that disinhibited eating when blood sugar is thought to be low predicts weightrelated insulin mismanagement, and this, in turn, predicts higher HbA1c. • Majority some degree of disinhibition when blood glucose is low (e.g., eating foods they do not typically allow) plus negative affect (e.g., guilt/shame). DM SPECIFIC TARGET FOR TREATMENT

Animals models of binge eating environmental factors • A period of under nutrition. • Divert food stomach • Intermittent availability of highly palatable food • Stress. • Breeding (Rada et al 2005, Lewis et al 2005, Avena et al 2005, Corwin 2006, Corwin & Hajnal 2005, Boggiano et al 2005; Avena & Hoebel 2003, Avena & Hoebel 2007, Boggiano et al 2007).

Animals models of binge eating

(these animals also become addicted to other substances e.g. amphetamine & change in opiate, dopamine receptors. Avena et al 2011, 12)

Animal models of addiction “binge form of administration is key”- rate of change of drug of abuse in brain a key variable. (Kreek 2013,2014). Glucose similar mechanism cocaine (Blum et al., 2014).

A ‘‘feed-forward’’, positive feedback model of food addiction (Alsio et al., 2012).




I F E

Interpersonal conflict/concern of diabetes management Low mood, anxiety

MOOD INTOLERANCE




Neuroadaptation Strict dieting Addictive eating Impulsive wanting

Binge eating


Features of under-eating + low weight Reduced insulin

WHAT ARE OUR TREATMENT TARGETS?




I F E


MOOD INTOLERANCE

Over-evaluation of control over eating, shape or weight Inhibition Training




Binge eating



Skill Sharing for Carers



Focus on weight & Training eatingSkills in diabetes For Carers L management (Dolphin)

I F E


MOOD INTOLERANCE





Binge eating



CBT modules targeting the other aspects of psychopathology Defective self -DM


Focus on weight & Training eatingSkills in diabetes For Carers L management (Dolphin)

I F E


MOOD INTOLERANCE




Neuroadaptation Strict CBdieting Addictive eating Impulsive wanting

Binge eating



Conclusion Factors that increase eating disorder risk in T1DM • Weight gain with insulin treatment (body dissatisfaction) • Dietary restraint and salience of weight and food rules. • Insulin misuse as highly effective purging strategy • Chronic illness can reduce self esteem. • Compulsivity and Impulsivity general risk factors and interact with insulin treatment. • Intermittent sugar rushes (fast/feast) produce plastic changes in the reward and counter reward system develop which lead to food addiction. • Links between family functioning, glycaemic control and treatment adherence

Feedback please for Writing Group! • Please give us feedback on this model. • Have we missed anything out? • Are there other treatment targets?

Diabetes Research Network Type 1 Diabetes and Eating Disorders writing group • •

• • • • • • •

Research Ideas to improve management of T1DM and eating disorders King’s Health Partners: Professor Khalida Ismail (liaison psychiatrist) Dr David Hopkins (diabetologist), Professor Janet Treasure (eating disorders psychiatrist), Dr Anne Doherty (liaison psychiatrist), Dr Emma Smith (clinical psychologist), Dr Simon Chapman (paediatrician) University College London Partners: Dr Miranda Rosenthal (diabetologist), Professor Peter Hindmarsh (paediatric epidemiologist), Dr Deborah Christie (consultant clinical psychologist) Oxford University: Dr Katharine Owens (diabetologist), Dr Pamela Dyson (senior dietician) Cambridge: Dr Mark Evans (diabetologist), Professor David Dunger (paediatric diabetologist), Dr Carlo Acerini (paediatric diabetologist) Cardiff: Professor John Gregory (paediatric diabetologist) Newcastle: Dr Sylvia Dahabra (eating disorders psychiatrist), Dr Nicola Leech (diabetologist) Sheffield: Professor Simon Heller (diabetologist) Capacity building: we are including Dr Carol Kan (ST4 in psychiatry and BRC Preparatory Fellow, King’s Health Partners) as a co-worker for career development.

Why do we need to focus on Eating Disorders in T1DM? • Eating disturbances more prevalent in young people with IDDM than those without T1DM – Girls (aged 12-19) with T1DM 2.4x more likely to have ED (EDNOS, BN) than age matched controls (Jones et al., 2000) – Sub-threshold ED - 1.9x – Significantly higher HbA1cs in ED

• High rates of insulin misuse as weight loss strategy • Eating disorder symptoms associated with poorer glycaemic control and greater probability of diabetic complications (Rydall et al., 1997)

Food for thought: what are the skills we need to manage ED in the diabetes setting Khalida Ismail London Strategic Clinical Networks 11 November 2014

Overview • Clinical context • Psychological and biological processes • Components of a gold standard service

Time trends in age-specific incidence rates of type 1 diabetes

Harjutsalo et al Lancet 2008;371:1777-82

Epidemiology of type 1 diabetes Incidence increasing

• At childhood rate of 6%/year

Potential explanations

• an increase in penetrance of diabetes genes • hygiene hypothesis (enteroviruses) • accelerator hypothesis (increasing weight) 57

Intensive insulin therapies in type 1 diabetes Risk of Retinopathy (Panel A) and Rate of Severe Hypoglycemia (Panel B) in the Patients Receiving Intensive Therapy According to Their Mean Glycosylated Hemoglobin Values

The Diabetes Control and Complications Trial Research Group. N Engl J Med 1993;329:977-986

Psychology interacts with biology

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Psychology interacts with biology Onset of distorted body image

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Clinical formulation for ED in T1DM Premorbid

• weight • family factors • personality (perfectionistic, self esteem) • genetics

Diagnosis

• developmental transition stages • emotional experience of diagnosis • fluctuations in weight

Living with T1DM

• attachment style • support systems v stigma • Intensive medical regimens • medical and parental gaze

Disordered eating

• • • • •

• • • • •

dieting/overeating Insulin reduction hypoglycaemia binge recurrent DKA abnormal illness behaviours

depression borderline traits anxiety adjustment/denial body image

• • • • •

Behaviours

Biomedical

Psychological

Social

increase BMI hyperglycaemia hypoglycaemia gastroparesis dawn phenomenon

• relationships • education and employment • reduced productivity • social isolation

Clinical indicators HbA1c  weight  attendance +⁄− family expressed emotions

evidence based medical interventions

Differential diagnosis of recurrent vomiting in type 1 diabetes Purging secondary to anorexia/bulimia Psychogenic (anxiety) Autonomic gastroparesis Physiological gastroparesis secondary to hyperglycaemia Pregnancy Non diabetes related eg reflux 68

Physiological processes Hypoglycaemia

• excessive over eating

Hyperglycaemia

• catabolic state • insulin resistance

Insulin treatment

• anabolic state

Increased growth hormone

• insulin resistance

Gastroparesis

• alters gut hormone secretion • affects satiety

Dearth of evidence based treatments in type 1 diabetes Olmstead et al 2002 • RCT n=85 • T1DM and disordered eating • 6 sessions psychoeducation • Some disordered eating improved but • HbA1c did not improve

Takii et al 2003 (n=19) • Feasibility study • T1DM and bulimia nervosa • Inpatient programme of intensive CBT • Bulimia nervosa remitted • HbA1c improved

Gold standard T1DM and ED service Ethos

Organisation

Clinician

Patient and family

Ethos

Duty of care Can’t pass the buck In for the long haul

• For people with T1DM and ED, the multi disciplinary diabetes team is best placed to manage and support

• No longer acceptable to say ‘its not my problem’ because its ‘up there’ and ‘let the psychiatrists fix it and then get back to me’

• collaboration with the patient • the patient is part of the team • expect relapse remitting course

Organisation Integrated service

• mental health should move into diabetes care as one unit • this is what it is like for the patient • specialist beds in tertiary centres

Segregated services

• parallel services are probably ineffective and more expensive

Clinical processes

Profession and specialty

• mental health professional with knowledge of medical nuances in T1DM and ED • dedicated diabetes professionals who are competent at ED

Skills

• core skills for all diabetes professionals • advanced skills for some diabetes professionals • case managers eg King’s 3DFD model and Cambridge case management model for DKA • family work • adolescence and mental health

Patient Raising awareness

• self help materials • information giving at diagnosis • instruction during structured education

Family support

• carers need information, guidance and sometimes additional skills • family interventions

Schools/workplace

• patient centred liaison with schools and occupational health

Core skills: motivational interviewing Active listening (OARS)

Managing resistance

Directing change

Supporting self efficacy

• Open questions • Affirmation • Reflections • Summaries • selective attention/positive reframing • normalising • collaboration • managing ambivalence • helping patients to recognise their desire, ability and reasons for changing • commitment to change • their belief that they have the ability to self manage

Eliciting the problem using motivational interviewing It seems like you want to have good diabetes control but it has been difficult (with weight changes). Have I understood you correctly? Following rules about eating can sometimes to lead to weight and shape issues that are hard to manage. Have you noticed difficulties like this? Your diabetes is important to you -I can see that -so thank you for coming today-it must be hard juggling diabetes with studies, wanting to be just like your friends Perhaps you are here because your parents want you to come

Advanced skills: CBT techniques Thoughts • Since insulin, I am getting fat • I think /fear I am having a really bad hypo • I hate having diabetes • I am going to get complications/Im going to die • I am a failure/Im not like everyone else • I don’t like this anxious feeling so I will comfort eat instead

Feelings

Behaviours

• I am anxious • I am sad • I am angry • I am irritable

• Reduce/omit insulin (usually fast acting) • Over treat hypo • Forget diabetes equipment

Case management: 3 Dimensions For Diabetes (3DFD) • • • • •

debt management housing support occupational rehab literacy advocacy

• patient-led MDT meeting • increase self efficacy for diabetes • HbA1c

• • • • •

Social interventions

Diabetes

Patient

Psychiatry

medication support biomedical monitoring diabetes education technology complications

• diagnostic assessment • risk management • psychotropics • brief psychological treatments • family work

Family and carer techniques Professor Janet Treasure

Summary ED in T1DM is a growing problem with little evidence based treatment Interplay of many psychological and medical processes in onset and perpetuation A gold standard model is where mental health is integrated into diabetes services by the range of psychological skills available


Eating disorders can happen on our watch: What to look out for  Dr Stephen Thomas, Clinical Director  London Diabetes Strategic Clinical Network

What are we talking about?

Sir William Gull in 1968 - anorexia hysterica.

Diabulimia T1ED Disturbed Eating Behaviour

1990 - 57 recorded case reports

How common is it? Depends on what we are talking about • Severe diabulimia cases • How common are eating disorders • How common is insulin omission


Daneman et al 2002

Click edit Master title style Age to and prevalence of insulin omission for

Prevalence of Insulin Omission (%)

weight control

9-13 years 1Colton

12-18 years

16-22 years

et al., 2000 (n=90): 1% prevalence of insulin omission in pre-teen girls; et al., 1997 (n=91): 14% in adolescent girls (baseline assessment); 3 Rydall et al., 1997 (n=91): 34% in young adult women (four-year follow-up of baseline sample). 2 Rydall


Girls with type 1 diabetes 25% of evidence of disturbed eating behaviour 33% for insulin omission Wisting et al Diabetes Care 2013

Eating disorders twice as common in those with diabetes age 12 - 19 Jones et al BMJ 2000


100 80 Highly Disordered 60 Moderately Disordered Non-Disordered

40 20 0 Retinopathy*

Kidney (Rydall et al., NEJM 1997).


Increased mortality if type 1 diabetes and anorexia

SMR 4.06 8.86 14.5

Nielsen et al Diabetes Care 2002

London Strategic Clinical Networks Omitted Doses

Chronic Complications

Acute Complications

Premature Mortality Larranaga et al



Wide Glycaemic Excursions Recurrent DKA High HbA1c’s Weight swings loss and gains Hypoglycaemia!

92

Why?

• Fluctuations of weight around diagnosis and start of insulin replacement • Management involves constant monitoring of diet and carbohydrate intake • Lower feelings of self worth / depression • Induce family stress Franke et al Journal of Diabetes Nursing 2014

Obstacles identified during initial assessment Intrapersonal Barriers Mental health issue in teen (total)

Number (%) 25 (81%)

Weight and shape concern

18 (58%)

Low Mood

10 (32%)

Anxiety

6 (19%)

Substance abuse

3 (10%)

Oppositional behavior

2 (6%)

Fear of Hypoglycemia

6 (19%)

Learning and attention problems

4 (13%)

Significant knowledge deficit

0

Interpersonal Barriers Single Parent Family

13 (42%)

Inadequate or ineffective parental support

29 (94%)

Family systems difficulties

26 (84%)

Mental health issues in parent(s)

10 (32%)

Financial stress

13 (42%)

*multiple obstacles were identified in the majority of these subjects

Percentage of Sample

Common behaviours 100 90 80 70 60 50 40 30 20 10 0

Baseline Follow-up

Binge *Dieting **Insulin ***Self- Laxative eating omission induced use vomiting

(Rydall et al., 1997).


• Eating disorders are more common in adolescent and young adult females with diabetes. • When present, they are associated with: • High frequency of insulin omission • Worse metabolic control • Earlier onset of complications • Higher mortality • Recurrent admissions

Management

• Key thing is probably awareness and recognition – early diagnosis? Screening tools / questionnaires • What is differential diagnosis for recurrent DKA do we consider this properly. • Severe cases need joint ED / diabetes approach • Milder cases need MDT approach within clinics


Q&A panel Facilitator: Nicola Kingston London Clinical Senate Council Patient Voice member > Dr Lise Hertel - GP / commissioner > Professor Khalida Ismail - Psychiatrist > Claire Kearns - Service user > Dr Stephen Thomas - Diabetologist > Professor Janet Treasure - Eating disorder specialist > Dr Billy White - Paediatrician


Next steps  Dr Stephen Thomas, Clinical Director  London Diabetes Strategic Clinical Network


Closing remarks Co-chairs  Dr Frances Connan, Clinical Director Vincent Square Eating Disorders Service  Dr Stephen Thomas, Clinical Director London Diabetes Strategic Clinical Network