Workshop held at Eating Disorders Alpbach 2013,

The 21st International Conference,

October 17-19, 2013

Interventions to improve eating

disorder health literacy in order

to reduce community burden. Phillipa Hay

School

of Medicine & Centre for

Health Research

Workshop Outline:

Theme ‘The treatment gap’ and how

to close it

• What contributes to it? - the role of eating

disorder mental health literacy

• Can it be reduced?

–our experience with targeted prevention

–professionals and people with an ED

• A new paradigm – integrated programs

addressing weight disorder and body

dissatisfaction

We know that

• There are effective treatments for common eating disorders (EDs) such as bulimia nervosa and binge eating disorder

• Interventions, especially cognitive behavioural therapy need not be intensive and/or delivered by specialists

Hay P IJED May 2013 open access

Hay PJ, et al. Psychological treatments for bulimia nervosa and

binging. Cochrane Database of Systematic Reviews 2009, Issue 4.

We also know that

Eating disorders (EDs) in the

community are associated

with high burden and poor

health related quality of life

Studies of burden

Reviews support an eating disorder having a substantial impact on individual’s Health Related Quality of Life, in the mental health domain, i.e. their mental health limiting people in being able to do usual activities

• that remains when controlling for weight

• that is as severe or more severe than levels found in other major disorders such as major depression or ischaemic heart disease - Jenkins et al., (2011) Clinical Psychology Review

31: 113–12;1 Hay & Mond (2005)J Ment Health 14: 539-552.

And quality of like has also found

to be poor in..

• community women with body dissatisfaction without an eating disorder

–Mond et al 2013 BMC Public Health,

• community men & women with disordered eating behaviours

– Mitchison et al., 2012 PLOSOne

Despite impairment in

health related quality of life

very few people with an

eating disorder are accessing

effective treatments

Hart et al Clin Psychol Rev 2011

• Systematic review n=1 4 studies

• Pooled prevalence of treatment

seeking: 23.2% (95% CI=16.6, 31.4).

• Cases more likely to receive

treatment for weight loss than for

eating problem.

Many putative causes of the

Treatment Gap • Stigma, belief in self-reliance/self-help

• Lack of information & resources

• Accessibility including

– Cost to the patient

– Cost to the service – rationing

• Fear of change: “I was afraid of weight gain”

• Hepworth & Paxton , 2007, Cachelin & Striegel-Moore, 2006, Becker et al. 2004

And ?

Poor eating disorder

health literacy

Jorm 2007: “knowledge and beliefs about mental disorders that may aid in

their recognition, management and treatment”.

Views from:

community

men & women

practice attendees

clinicians:

doctors, psychologists, counsellors,

dietitians

presented with BN, AN, BED, EDNOS

vignettes

Australian studies of ED ‘health

literacy’

Consistent findings:

• Weight and desire to lose weight takes primacy

• A favourable regard for the weight control strategies of EDs

• Stigma and perceived discrimination is high

• Pessimism about treatment outcomes

• Low regard for ‘evidence-based’ Rχs – Exception CBT BN, BWLR χ BED

Contrasts better knowledge and

recognition in UK psychiatrists

although confidence to provide

treatment was limited

Jones et al (2013)

European Eating Disorders Review 21:

84–88

Solutions:

Taking treatment to the

sufferer – some

Australian developments

• Mental health first aid

• Training the non-specialist

• Online accessible help

Mental health first aid for

eating disorders: pilot

evaluation of a training

program for the public

Hart et al. BMC Psychiatry 2012, 12:98

Pilot evaluation with 6 month follow-

up

• 73 Students and staff university

residencies

• Improved recognition of bulimia nervosa

• Little change attitudes but already

empathetic

• Increased confidence in providing help

but no change in amount or type of help

provided

CEDD Online Learning Program for the non- specialist Cedd.org.au

highly interactive online course, using expert videos, role-plays, interactive exercises and quizzes.

provide a comprehensive training in the medical, psychological and dietetic management of eating disorders.

flexible learning format allows for the tailoring of the learning experience to a basic or more challenging level.

Five modules covering skills required in

each step of the diagnosis, assessment and

treatment of clients, for both children and

adults, across all major eating disorder

diagnoses Each with a Core curriculum, required to pass the

quiz, an ’In Practice’ section offering a more in-depth

view of the topic and clinical tools, and a Resources

section

Evaluation promising, well-received, but

few complete all modules?

Structure – Maguire et al.

“Smart eating” online program

Leung et al. Journal of Eating Disorders

2013

1. Browse through the information on healthy eating

2. Solicit support from family members to overcome an eating disorder, and ask them to view the information about family education

3. Complete all health assessment questionnaires at baseline

4. Work through the worksheets on motivational enhancement

5. Follow the steps in the self-help strategies to overcome eating disorders

6. Use different strategies to promote psychological health

7. Complete all health assessment questionnaires again at 1, 3- and 6-month follow-up intervals to monitor personal progress

Our question

Do these strategies close the

treatment gap?

Women’s Eating Health and

Lifestyle (WEHL) studies

21

We sought to evaluate impact of a

GP Education group on their patients

• Education session run by a GP who was part of

the research group

• Well attended & well received

• Done at time of regular lunchtime meeting

• All GPs given GP guide

22

A GP’s Guide to

Common Eating

Disorders. Anita Star

23

DSM-IV Diagnostic Criteria for AN

What is Anorexia Nervosa (AN), Bulimia Nervosa (BN) and

Eating Disorders Not otherwise Specified (EDNOS)?

The distinguishing feature of AN is a marked loss of weight due to extreme dietary restriction. Medical complications,

including loss of menstruation, are a consequence of severe weight loss and may be life-threatening. While Anorexia

Nervosa (AN) tends to attract the most media attention, this disorder is uncommon (less than 0.5% of women) and affects

primarily adolescent girls.

1. Refusal to maintain body weight at or above a minimally normal weight for age and height (e.g., weight

loss leading to maintenance of body weight less than 85% of that expected; or failure to make expected

weight gain during period of growth, leading to body weight less than 85% of that expected).

• Intense fear of gaining weight or becoming fat, even though underweight.

• Disturbance in the way in which one's body weight or shape is experienced, undue influence of body

weight or shape on self-evaluation, or denial of the seriousness of the current low body weight.

• In postmenarcheal females, amenorrhea, i.e., the absence of at least three consecutive menstrual cycles.

A woman is considered to have amenorrhea if her periods

Page 3 of booklet

24

Further information

• The GP guide then has further information

about Eating Disorders, the Mental Health

Literacy study and the treatment of complex

patients

• A brief assessment tool SCOFF for Eating

disorders follows and this was discussed at the

GP education session

25

The following questions may assist in assessing if a patient has or is at high risk of an ED.

1.Do you think you have an eating disorder?

2. Do you worry about your shape and weight?

3.Have you had any eating binges (eg eating a lot in one go and feeling out of control)

The SCOFF screening tool questions

S- Do you make yourself Sick because you feel uncomfortably full?

C- Do you worry you have lost Control over how much you have eaten\

O- Have you recently lost more than 6.35 KilO grams (One Stone) in a 3 month period?

F- Do you believe yourself to be Fat when others say you are too thin?

F- Would you say Food dominates your life?

One point for every yes; a score of > 2 indicates further questioning is

warranted. (Morgan et al 1999).

A further two questions have been found to have a high sensitivity and specificity to BN (but are not diagnostic).

1.Are you satisfied with your eating patterns? (‘no’)

2. Do you ever eat in secret? (‘yes’)

A ‘no’ for question 1 and a ‘yes’ for question 2 indicates high suspicion for bulimia nervosa and further questioning is

warranted.

Why don’t people seek help?

Research suggests that despite the availability of effective treatments, few people with disordered eating seek treatment. A

study by Mond et al (2004) found in 525 ACT community women, with high levels of ED symptoms, only 19% had ever sought

specific treatment, and among those who did, treatment seeking for weight reduction was far more common than for an ED.

In addition, the mean number of years between their current age and age at first seeking treatment was 10.7 years. Similar

results have been found in women….

Booklet page 7

26

What Treatments Work For Disordered Eating?

Cognitive Behaviour Therapy (CBT). Findings from a large number of studies have shown that the most

effective treatment for BN and related conditions is a specific type of psychotherapy, known as CBT, which

aims to modify the dysfunctional attitudes to weight and shape underlying most problems with eating. CBT has

been shown to reduce binge eating and extreme weight-control behaviours, as well as improving symptoms of

depression.

Interpersonal psychotherapy (IPT), a form of psychotherapy focusing on relationships with other people, has

also been found to be effective, but it takes longer than CBT to work and it may not be appropriate for all

individuals.

Antidepressant Medications are also effective in reducing the frequency of binge eating and weight control

behaviours, while improving mood.

However, the effects are not as great as that obtained with CBT and

available evidence available suggests that they may not be sustained.

Antidepressants are likely to be helpful as a first step in treatment,

particularly where there are symptoms of anxiety or depression.

Combining CBT with antidepressant medication may also be helpful with BN or similar problems.

Generally side effects are minimal with newer antidepressant medications. The best evidence is for fluoxetine,

also known as Prozac or Lovan. Weight gain or loss is unlikely with CBT.

Booklet page 13

27

More GP information

• Various evidence based treatments are

described

• More in depth information about CBT

28

Why Does CBT Work?

A characteristic feature of all eating disorders is the tendency to judge self-worth largely, or even exclusively, in terms of

eating, shape and weight, and their control, rather than evaluating self-worth on the basis of perceived

performance in a variety of domains (e.g. interpersonal relationships, work and parenting). According to the cognitive-

behavioural theory of the maintenance of BN, this over-evaluation of weight and shape is the main factor responsible for

maintaining eating-disordered behaviour. The primary function of CBT is

therefore to change dysfunctional attitudes to weight and shape and this is why CBT is effective in treating a wide range

of eating problems. It is also

important to note that CBT focuses on changing current thoughts and

behaviours, regardless of what events in the past might have led to this state of affairs. This is in contrast to some other

forms of psychotherapy which

focus on causes that stem from the past. Finally, it should be noted that where problems with eating occur in people

who are overweight, implementation of CBT may need to be modified to encourage healthy food choices and/or

increased physical activity.

What happens During CBT?

When administered by a psychotherapist, such as a psychologist or counsellor, CBT generally involves 15-20 one-on-

one treatment sessions, each lasting about one hour, over a 5-month period. However, evidence is accumulating that

the use of a structured self-help treatment manual is also effective when supervised by a GP or other health

professional. In this sort of arrangement, the patient would work through the manual by themselves, but go to the

“therapist” (i.e. the GP or other health professional) every now and then to monitor progress. Regardless of how it is

administered, CBT usually involves three overlapping phases.

Booklet page 14

29

List of when and where to refer in ....

• Community Mental Health

• Child and Youth mental health service

• Community dietitians

• Private psychologists

• Child psychiatrist

• List of “approved” websites for patients

• with contact details and phone numbers

30

GP Clinics resources

• Both GP clinics were given the booklets for their

waiting rooms

• Clinic with GP education first knew that the brochure

was there and were shown it in detail

• Clinic with no GP education were shown the booklet

briefly & made aware the booklet was available

• Both were encouraged to give patients the booklet

31

A guide on

Common Eating

Problems

32

More information for patients

Information for patients follows with the same format as the GP guide:

What are eating disorders?

What treatments are available ?

How do they work?

What treatments don’t work

What happens during CBT

A chapter of a self help book by Peter Cooper was attached with information on how to purchase the book

List of reputable websites (as before)

& A waiting room poster

33

Waiting

room

poster:

34

Attendee Survey

• A written self-report survey was handed to adult women in waiting room

• Which they could fill it out then and return it in box or return it in a replied paid envelope

Results

• GPs appreciated the information

• Over 4 months 155 women completed a health

literacy survey

– 9% Clinical Level Eating Disorders (1 BN)

– 7% subclinical disordered eating

• But

– Most patients were unaware of the poster

– Almost no booklets were taken/given out

Next step: Direct action?

Taking treatment directly to people

who are symptomatic but not in

treatment

Thereby using the tools

available to close the

treatment gap

RCTs of targeted

interventions

First RCT in the community

Aim: To test a health literacy intervention in

community women with disordered eating

(clinical levels of severity) who were not

currently in treatment

• Hay et al.(2007) Early Intervention in

Psychiatry, Vol 1, pp. 316-324.

328 interviewed

185 BN, BED or EDNOS

122 consented to ‘follow-up’ & were

random ized

61 intervent ion 61 cont rol

group

Participants

What each group received

Intervention: Information on eating disorders, in particular on evidenced

based treatments where treatments may be obtained locally.

A detailed description of self-help CBT book.

Feedback on their symptom profiles & prompt to seek treatment

Control group received: Lists and contacts of local specialist treatment facilities and

the (local) Eating Disorders support group & feedback on symptom profile

SF-12 Mental health component scores

33

34

35

36

37

38

39

40

41

42

43

Baseline 6-month 12-month

Intervention

Control

Twelve-m onth follow-up

quality of life:

Other results:

Participation was associated in all with

Increased help-seeking

Improved identification of an eating disorder

Decreased pessimism about eating disorder treatment

But little change in regard for various treatments

Small effect of the intervention on symptoms and function

But we could only partially

replicate the outcomes in

second community based RCT

Hay et al (2011) Targeted prevention in bulimic eating disorders: randomized controlled trials of

a mental health literacy and self-help intervention. In: New Insights into the

Prevention and Treatment of Bulimia Nervosa. InTech, Rijeka, Croatia, pp. 69-84.

The third RCT

Aimed to investigate the impact of enhancing the MHL intervention by

• Adding an evidence-based pure self-help treatment book to the MHL intervention

• Adding eating and weight disorders health literacy (EWD-HL) on nutrition and exercise

• And ensuring people received it in a setting where health professionals were able to offer additional support

Specific aims:

• To test the ease of screening women in general

practice with untreated ED or symptoms and the

acceptance of an unsolicited self-help and EWD-

HL intervention.

• Secondary aims were to inspect symptomatic and

MHL outcomes compared to a non-specific self-

help intervention.

• PSH-CBT book & EWD HL versus PSH-self-esteem

book “Overcoming Low Self-esteem” (Fennell,

1999).

Self-help book of Cooper 1998

• Part 1: Psycho-education

• Part 2: SH CBT

– Monitoring

– Establishing a meal plan

– Learning to intervene

– Problem solving

– Eliminating dieting

– Changing your mind

• Additional information on nutritional & exercise advice for healthy weight management

Participants • 326 women were approached over 6-months in two

general practices.

• 163 were screened of whom 44 (13.5%) women met

criteria and 36 (80%) agreed to do the full

assessments and to have a follow-up assessment.

• Most were in full or part-time employment (57%)

were married or living as married (60%)

• Mean age was 40.1 years (SD 11.9) and mean BMI

was 30 (SD 7.5).

• The majority 40 (90%) were binge eating (7

subjective bingeing only) and 9 (20%) were using

laxatives, diuretics or self-induced vomiting

Results at 3 months

• Limited by low numbers and follow-up 52%

• EWD literacy group more likely to identify the

BED in the vignette

• Little change in perceived helpfulness of

evidence based treatments

• Severity ED Sx reduced across both groups

but no difference between groups

In regards to the value of self-help

books:

• It is likely that these are better provided in the context of a consultation where their role and relevance can be explained.

• Given that in MHL surveys identifying the main problem for the woman with a bulimic ED in the vignette is most often low self-esteem . it was of interest that the self-esteem SH book appeared better received and more found it personally helpful than the ED SH book which some may have perceived as stigmatising

And...

• Although more than half of the respondents reported reading and understanding a significant proportion of the self help material, this appears to have had no impact on curbing attempts to lose weight.

– At assessment, 29 (85%) women reported trying to lose weight in the previous six months whilst in the three month period between assessment and follow up 21 (91%) reported they had been trying to lose weight.

So we decided to return to the

community women in the first

RCT and explore in thematic

analysis their experiences in

help-seeking

In particular:

1. What contributed to a good/bad experience?

2. What were the barriers?

Evans et al (2010)

328 ACT community women interviewed

185 EDs – most EDNOS/BED

122 consented to ‘follow-up’ & were randomized

61 to health literacy intervention 61 to controls

71 (58.2%) completed year 4 follow-up survey

57 completed interviews

Help-seeking

• Most (~75%) for weight loss

• Also for

–Disordered eating and nutrition

–Weight gain

–Other issues related to mental health and

fatigue

• Mostly from GPs, also commercial weight

loss program, dieticians

Stigma

• “She’s a psychiatrist it’s that stigma. Oh god will she

lock me up?”

• “….we lived out in the country ..there just wasn’t

anything like that there. And also one of the other big

things with this was the whole stigma of it. Like my

Mum didn’t even want me to go out of the house in

case somebody saw me and knew what I was

suffering from.”

“The Brush Off”

Don’t ask, don’t tell

• “I don’t think that they really took the eating thing

into consideration as my mental health… I don’t think

they understood that my eating problems were as

important to me”

• “I don’t know whether it was because perhaps I was

still in the healthy weight range … but she didn’t really

diagnose it as a serious issue … I would vomit every

day … and to me that was pretty serious”

Under recognition

• “It’s almost like you have to drop your weight down

to a level where everyone goes, ‘oh my god,

something’s wrong’ before people will help you. You

can’t go in there at normal weight and say I’m having

problems and get help”

• “She measured me and said I’m considered obese so I

just need to lose weight now. But I didn’t tell her

about my eating habits or anything in the past..”

Also in this community study–

despite help seeking and trying to

lose weight we found that: • Weight instability was more common

than weight stability

–and the former was associated with poorer mental health

• There was a noted persistence of eating disorder symptoms and behaviours Hay et al., Nutrients 2013,

Darby et al EWD2009

Poorer self view &

increased

Body image concerns

Disordered eating &

extreme weight control behaviours

Poorer mental health

& quality of life

Fluctuating weight

And mindful that ED MHL studies

consistently find

• Favourable regard for weight losing strategies of EDs

• Fear weight gain with treatment

• Stigma of eating problems e.g., AN comparable to obesity (but not simple)

– Hepworth & Paxton IJED 2007 40:493-504; Zwickert &

Rieger Journal of Eating Disorders 2013 1:5

CBT and weight loss (Hay et al 2009 Cochrane Library)

Direct action 2?

Taking Rχ to the sufferer by integrating

Rχ for eating disorders with programs

for weight management and obesity

Or thus in..

...developing strategies to help people

with EDs understand their problems and

how to effectively seek treatment we

may need to more directly target weight

concern and deliver community

interventions in mental health stigma-

free contexts such as ‘lifestyle’ or ‘well

being’ centres....

With a paradigm shift in

both areas

Promotion of healthy eating and healthy

lifestyles (including activity)

Positive sense of self and societal acceptance

of a range of body types

Would be associated with less disordered

eating and more weight stability & perhaps

even less obesity

Healthy Approach to WeIght and

Food in Eating Disorders

(HAPIFED)

Integrates CBT-E with Weight

management – Adds:

• Psychoeduction about metabolism of weight

loss and ‘set point’

• Appetite regulation – hungry and non-hungry

eating

• Internal control vs external (potions/calories)

• Exercise for health – Loughborugh Eating and

Activity TheraPy LEAP

• Mood regulation skills

The Australian 8/12/99

Women today

Height 164.5 cm

Weight 65.9 kg

BMI 24.4

Women in the 1920s

Height 161.7 cm

Weight 61.5 kg

BMI 23.5

Women’s Eating Health and Lifestyle (WEHL)

studies

• Jonathan Mond UWS • Susan Paxton La Trobe • Frances Quirk JCU • Bryan Rodgers ANU • Cathy Owen ANU

• Carlie de Angelis

– Aberdeen

• Anita Darby, JCU • Carolyn Clark JCU • Jodi Nilsson JCU • Elizabeth Evans UWS • Marta Sawoniewska UWS • Ati Jhajj UWS

Funding:

Private Practice

Fund of The

Canberra Hospital

ACT Health and

Community Care &

ACT Mental Health

Rotary Health

Research Fund

James Cook

University

University of

Western Sydney