Identification and monitoring of eating disorders SARAH FULLER

Identification and monitoring of eating disorders SARAH FULLER ADVANCED SPECIALIST EATING DISORDERS DIETITIAN BEDFORDSHIRE CAMH EATING DISORDERS TEAM AND RHODES WOOD HOSPITAL

What we aim to cover Myth busting Incidence of ED’s Symptoms of ED’s Different types of ED’s ◦ Greater focus on the main types: Anorexia Nervosa, Bulimia Nervosa and Binge Eating Disorder The Minnesota Study and what happens in starvation Refeeding Syndrome Neurobiology of ED’s Medical monitoring needed and National Guidelines Common medications used in ED’s

Case Study Katie, 14 y old girl. In January • Starts eating ‘more healthy’ • Missing some meals • Weight loss In February • • Taken to GP as parents worried about weight loss Weighed 42 kg (no previous weights) Bloods: U&E’s, LFT’s, Coeliac screen, Iron – all normal Reassures parents that this is ‘probably a phase’ and ‘come back in a month if still worried’

Case Study March • • • School worried Friends & teachers worried Katie is becoming more withdrawn Went back to GP – lost 10 kg (32 kg) GP phones Paediatric Rapid Assessment Unit in local Hospital • ? ? Cancer Seen by Paediatric Reg the next day • • • Thin with recent weight loss Talking and walking Bloods: ESR & CRP (normal) Pelvic ultrasound (normal) Speaks to Consultant – arranges follow up in clinic next week

Case Study In the meantime Katie stops eating for 2 days • • Parents take her to A&E ‘? Eating disorder’ Checks bloods from last week – all normal again Calls CAMHs and arranged for a community referral the following week 3 days later • • A&E again, admitted to Paediatric ward for monitoring Ward referral to CAMH Managed to not eat regularly on the ward Discharged a few days later as all medical investigations normal

Case Study Next day – Katie was found dead at home.

Group discussion: What behaviours or characteristics of someone with an eating disorder are you aware of? Have you seen any eating disorders patients on placement?

Incidence of Eating Disorders Children (12 y and under): • More likely to have an ED than Meningococcal Disease • 4 out of 5 children are afraid of being fat • Children as young as 6 y old are receiving treatment for eating disorders Adolescents: • • X 5 more likely to have an ED than T 1 DM X 10 more likely to have an ED than IBD AN is the 3 rd most common chronic condition in teenagers 35% present with medical instability Adults: • 725, 000 people in the UK are currently receiving treatment for eating disorders • 95% of these patients are aged 12 – 26 y old

On your GP caseload On an average GP list of 2, 000 patients: ◦ 1 -2 patients with Anorexia Nervosa ◦ 18 patients with Bulimia Nervosa ◦ About 10 per cent of the adolescent girls in your practice will have used weight reducing techniques other than dieting, i. e. vomiting, laxative or diuretic abuse, excessive exercising. Patients who have suffered with anorexia/bulimia nervosa for than 20 years stand a 20 per cent chance of dying from their illness, either by suicide or emaciation

What causes eating disorders? We don't know exactly what causes eating disorders. You may be more likely to get an eating disorder if: ◦ ◦ ◦ If you are female If you are an adolescent If you are in a period of transition: changing school, moving house / job, pregnancy etc… If you, or a member of your family, has a history of eating disorders, depression, or alcohol or drug addiction If you have anxiety, low self-esteem, an obsessive personality, or are a perfectionist If you have been criticised for your eating habits, body shape or weight ◦ High number of cases after young people being weighed at school and letter being sent home after being identified as overweight ◦ If you're overly concerned with being slim, particularly if you also feel pressure from society or your job – for example, ballet dancers, jockeys, models or athletes ◦ Women with PCOS or Diabetes (x 2. 4 risk of developing an ED esp BN or BED ◦ If you have been sexually abused

Symptoms Restricting oral intake • Healthy eating e. g. cutting out snacks, puddings, treats etc… • Excluding food groups e. g. carbohydrates, fats etc… • Socially acceptable restrictions e. g. vegetarian / vegan diets, fasting for religious festivals or beliefs • Hiding foods • On person e. g. in clothes, in hair, in mouth • Elsewhere e. g. given to pets, in bins, behind radiators, in umbrellas! • Poor eating behaviours e. g. long meals, smearing, • Fasting / refusal to eat • Remember: younger patients are at higher risk of restricting fluids and may need medical stabilisation quickly.

Symptoms Exercising • Group exercise e. g. PE, sports, walking to/from school/work etc… • Additional exercise e. g. unable to stop the above, exercising in bedroom or in secret (may have to do repeated exercise routines) • Subtle exercise e. g. standing, seated jiggeling, abdominal crunches, the ‘seated hover’, extra steps, serial pottering Key features of compulsive exercise: • Usually a daily activity that causes high levels of anxiety if missed • Planning their day around the exercise and other activities will be missed to prioritise the exercise e. g. avoiding social situations • Excessive exercisers report that they often feel like they are not good enough, not fast enough or not pushing themselves hard enough during a period of exercise. • They report feeling an intense pressure to increase the duration, intensity or difficulty of their exercise routine

Symptoms Vomiting • After meals or drinks • In secret or in public (dirty protest!) • On supervision: in showers or in tissues • You may find hidden vomit bags or in clothes etc… Medical complications of vomiting: ◦ Dehydration ◦ Electrolyte abnormalities (metabolic alkalosis or hypokalemia) ◦ Oesophageal tear (rare) – either partial (Mallory-Weiss) or complete (Boerhaave syndrome)

Symptoms Medication abuse e. g. Laxatives, diuretics or Insulin • Laxative abuse occurs when a person attempts to get rid of unwanted calories, lose weight, “feel thin, ” or “feel empty” through the repeated, frequent use of laxatives. • Laxatives work by targeting the large intestine. This means that once food passes through the small intestine, nutrients from the food have already been absorbed into the body. Any weight loss observed is solely from the loss of water- not calories or fat -and will only be temporary if the individual • Diuretics act on the kidneys to increase the low of urine and this can be seen as a ‘quick ix’ to lose weight • Insulin abuse is often called Diabulimia: By under dosing insulin, a diabetic will force sugar to leave his or her body through urine. The result: easy weight loss. (www. dwed. org. uk is a good resource)

Symptoms Weight manipulation • • Water loading Hiding weights on self / inserting weights Wearing extra clothes Being weighed after they have already eaten DENIAL!!! They nearly always say 'I'm fine!' and can put up really convincing arguments to back this up Discussion with family members / friends is key.

DSM-5: Types of feeding and eating disorders The most common eating disorders are: • Anorexia Nervosa (AN) – when you try to keep your weight as low as possible by not eating enough food, exercising too much, or both • Bulimia Nervosa (BN) – when you sometimes lose control and eat a lot of food in a very short amount of time (binging) and are then deliberately sick, use laxatives, restrict what you eat, or do too much exercise to try to stop yourself gaining weight • Binge Eating Disorder (BED) – when you regularly lose control of your eating, eat large portions of food all at once until you feel uncomfortably full, and are then often upset or guilty • Other Specified Feeding or Eating Disorder (OSFED) – when your symptoms don't exactly match those of anorexia, bulimia or binge eating disorder, but it doesn't mean it's a less serious illness • Avoidant Restrictive Food Intake Disorder (ARFID) • Rumination Disorder • PICA

Anorexia nervosa (AN) 1. Weight below 85% of that expected or BMI <17. 5 kg/m 2 in adults 2. Fear of gaining weight / becoming fat 3. Distorted perceptions of shape & weight 2 subtypes: restricting and binge / purging NOTE: Amenorrhoea in women has been removed from the diagnostic criteria

Anorexia Nervosa sufferers Refuse food Enjoy cooking for others Count and restrict calories Refuse to maintain a normal body weight Are ‘faddy’ about food Refuse to eat with others Play with food, chew excessively and eat slowly Take strenuous exercise Wear large clothes Have a fear of gaining weight May engage in purging ◦ Exercise / vomiting Experience disturbance in perception of own body shape

Physical consequences of starvation

Bulimia nervosa (BN) • Recurrent episodes of binging, consisting of large amount of food in discrete period. Often experiencing tremendous guilt and a loss of control and will engage in fantastic efforts to undo these feelings • Binges are often in secret and can be excessively planned and looked forward to • Recurrent ‘compensatory’ behaviours • Binges 1 & 2 occur at least twice a week for 3 months • Self-esteem primarily dependent on perceptions of body shape and weight

Bulimia nervosa (BN) There are two common types of bulimia nervosa, which are as follows: • Bulimia Nervosa Purging type -This type of bulimia nervosa accounts for the majority of cases of those suffering from this eating disorder. In this form, individuals will regularly engage in self-induced vomiting or abuse of laxatives, diuretics, or enemas after a period of bingeing. • Bulimia Nervosa Non-purging type - In this form of bulimia nervosa, the individual will use other inappropriate methods of compensation for binge episodes, such as excessive exercising or fasting. In these cases, the typical forms of purging, such as selfinduced vomiting, are not regularly utilized.

BN: What might you notice? Normal slight overweight Sore throat / esophagus – can tear Fluctuations in weight Bad breath – smelling of vomit Dental erosion / tooth loss, bleeding gums Weakness, tiredness and fatigue Swollen glands in the face and neck Blisters on the back of the hand fingers "Russell's sign" Bloodshot eyes Deranged electrolytes and dehydration Chronic reflux Ability to vomit at will

BN: What might you notice?

HOW BULIMIA AFFECTS YOUR BODY

Binge Eating Disorder (BED) Defined as ‘recurring episodes of eating significantly more food in a short period of time than most people would eat under similar circumstances, with episodes marked by feelings of lack of control’. • Someone with binge eating disorder may eat too quickly, even when he or she is not hungry. • The person may have feelings of guilt, embarrassment, or disgust and may binge eat alone to hide the behaviour. • This disorder is associated with marked distress and occurs, on average, at least once a week over three months. • No attempt to ‘offset’ (vomiting, fasting, exercise etc…) these calories as seen in BN

Binge Eating Disorder (BED) The binge eating cycle Binge eating may be comforting for a brief moment, but then reality sets back in, along with regret and self-loathing. Binge eating often leads to weight gain and obesity, which only reinforces compulsive eating. The worse a binge eater feels about themselves and their appearance, the more they use food to cope. It becomes a vicious cycle: eating to feel better, feeling even worse, and then turning back to food for relief.

Binge Eating Disorder (BED) Generally, it takes a combination of things to develop binge eating disorder —including a person's genes, emotions, and experience. Biological causes of binge eating disorder Biological abnormalities can contribute to binge eating. For example, the hypothalamus (the part of the brain that controls appetite) may not be sending correct messages about hunger and fullness. Researchers have also found a genetic mutation that appears to cause food addiction. Finally, there is evidence that low levels of the brain chemical serotonin play a role in compulsive eating.

Binge Eating Disorder (BED) Social and cultural causes of binge eating disorder Social pressure to be thin can add to the shame binge eaters feel and fuel their emotional eating. Some parents unwittingly set the stage for binge eating by using food to comfort, dismiss, or reward their children. Children who are exposed to frequent critical comments about their bodies and weight are also vulnerable, as are those who have been sexually abused in childhood. Psychological causes of binge eating disorder Depression and binge eating are strongly linked. Many binge eaters are either depressed or have been before; others may have trouble with impulse control and managing and expressing their feelings. Low self-esteem, loneliness, and body dissatisfaction may also contribute to binge eating.

Simplified Model of ED Aetiology Race Gender Family History Perinatal Experiences Neurodevelopment Profile Attachment Cultural Context Change events Trauma Puberty Personality/ Temperament Weight & Body Image Concerns Abnormal diet, exercise and compensatory behaviours Eating Disorder Adapted from Eating Disorders in Adolescence 3 rd Edition (2007) Lask B and Bryant-Waugh R. Routledge, London

UNDERSTANDING STARVATION

Starvation 1. Metabolic adaptation • Glucose is your main fuel, can be stored in the liver • When you are starving and your glycogen stores have run out, your fat stores break down and produce Ketones – for your brain and heart (a backup fuel) 2. Slow your body down ◦ Professor Benedict 1915 ‘The Maltese’ (34 y old) – who gave his body to science starved himself over 31 days ◦ Slowing of heart rate, respirator rate, urine, temperature, BP 3. Switching things off • Windows task manager – your body knows how much energy various functions take • Periods are metabolically quite expensive THE BODY TRIES TO MAINTAIN HOMEOSTASIS DURING STARVATION – BLOOD TESTS WILL BE NORMAL

The Minnesota Starvation Experiment The Minnesota Starvation Experiment, also known as the Minnesota Semi-Starvation Experiment, was a clinical study performed at the University of Minnesota between November 1944 and December 1945 by Ancel Keys. The investigation was designed to determine the physiological and psychological effects of severe and prolonged dietary restriction and the effectiveness of dietary rehabilitation strategies. The motivation of the study was: ◦ First, to produce a definitive treatise on the subject of human starvation based on a laboratory simulation of severe famine, ◦ Second, to use the scientific results produced to guide the Allied relief assistance to famine victims in Europe and Asia at the end of World War II.

The Minnesota Starvation Experiment The study was divided into three phases: ◦ A twelve-week control phase, where physiological and psychological observations were collected to establish a baseline for each subject. Everyone was on ~3200 kcal/day to get to an ‘ideal’ body weight and psychological screening took place. ◦ A 24 -week starvation phase, during which the caloric intake of each subject was drastically reduced—causing each participant to lose an average of 25% of their pre-starvation body weight by reducing oral intake to ~1560 kcal/day as 2 meals a day. ◦ A recovery phase, in which various rehabilitative diets were tried to re-nourish the volunteers. ◦ 12 weeks where the volunteers were split into different groups, each receiving different calories to see the effect this had on recovery ◦ Then 8 weeks of unrestricted calorie intake

The Minnesota Starvation Experiment The conclusions from the study? • Confirmation that prolonged semi-starvation produces significant increases in depression, hysteria and hypochondriasis. Indeed, most of the subjects experienced periods of severe emotional distress and depression. • Participants exhibited a preoccupation with food, both during the starvation period and the rehabilitation phase. • Sexual interest was drastically reduced, and the volunteers showed signs of social withdrawal and isolation. • The participants reported a decline in concentration, comprehension and judgment capabilities. • There were marked declines in physiological processes indicative of decreases in each subject’s basal metabolic rate- reflected in reduced body temperature, respiration and heart rate. • DO THESE SYMPTOMS SOUND FAMILIAR?

The Minnesota Starvation Experiment The Minnesota Experiment required them to reduce their calorie intake by half to 1, 560 kcal to get them to lose 25% body weight.

Coxson et al. Am J Respr Crit Care Med 2004; 170: 748

Understanding the pathophysiology of starvation Normally, glucose is the body's preferred fuel (coming from the breakdown of carbohydrates). As the starved body has less and less available fuel the body shifts its metabolism to a catabolic state i. e. using body fat and muscle stores as fuel. With this shift, the body's production of insulin drops in response to a reduced availability of glucose. Prolonged starvation will lead to a gradual loss of cellular and muscle mass, often resulting in the digestion of major muscles and internal structures e. g. the heart, lungs, liver, and intestines. The body is now surviving by very slowly consuming itself.

Physical signs of starvation Malnutrition: ◦ Poor circulation (cold hands / feet), ◦ Feeling cold / hypothermic ◦ Dizziness on standing – is there an orthostatic drop in BP and pulse on standing, ◦ Palpitations or abnormal ECG, ◦ Fainting or pallor ◦ Thinning hair / dry skin / easily bruising ◦ Constipation – not eating and slowing down of GI tract ◦ Amenorrhoea or delayed puberty ◦ Tired all the time Not specific to a low BMI, can be very malnourished at a normal weight (but losing weight rapidly)

Psychological signs of starvation Malnutrition cause: • • • Low mood Anxiety Irritability Poor concentration Fixation around food Apathy

Starvation is not just about food Be aware of compensatory behaviours: • Laxatives or diet pills • Vomiting • Russell's sign • Dental erosion • Excessive exercise

Refeeding Syndrome The sudden reversal of prolonged starvation by the reintroduction of food leads to a correspondingly sudden requirement for electrolytes involved in metabolism. Who is at greatest risk? ◦ Patients who weigh less than 70% IBW ◦ Those who lose weight rapidly (>1 kg/week or 15% body weight in 3 months) ◦ Patients with a low white blood cell count

Refeeding Syndrome WHO ELSE IS AT RISK? ◦ Patients having chemotherapy ◦ Bariatric patients after surgery ◦ Liver disease ◦ Elderly patients ◦ Anyone not eaten for 5 days or more (famine, poverty and POW’s etc…)

Refeeding Syndrome – what happens? The change in the body’s metabolism from the starved state (catabolic) to the fed state can cause: ◦ Shift in electrolytes ◦ Low blood levels of Phosphate, Magnesium, Potassium and Calcium ◦ Sudden release of insulin ◦ Muscle weakness ◦ Neurological changes: Confusion / Seizures / Fits ◦ Cardiac abnormalities: abnormal heart rate, rhythm and ultimately cardiac arrest ◦ Deranged fluid balance e. g. puffy ankles

Literature Review: Refeeding malnourished children WHO / Australian guidelines: ◦ Children <16 y, starting on 50 -75 kcal/kg USA / Canada guidelines: ◦ Children <18 y, starting at 30 -40 kcal/kg European guidelines: ◦ Adult patients only, 10 -15 kcal/kg UK guidelines MARSIPAN / NICE ◦ Adult patients, 5 -20 kcal/kg ◦ Junior MARSIPAN, <18 y, 15 -20 kcal/kg ◦ GOSH research, <18 y, 30 -40 kcal/kg, not starting below 1, 200 kcal/day

Refeeding process Majority of patients are safe to be re-fed at home (especially with early intervention). However, some will require acute hospital admission to monitor this process (should be no longer than 2 weeks) ◦ L&D has a Paediatric refeeding protocol Meal plans: ◦ Safe to start at 1, 200 kcal and increase by 200 kcal every other day until 2, 000+kcal/day GP’s asked to prescribe ◦ Forceval O. D. or over the counter A-Z multi-vitamin and mineral ◦ Thiamine 100 mg B. D ◦ Usually safe to stop this once an appropriate oral diet has been established on a regular basis i. e. in 2 weeks if protocol is followed by patient

The neurobiology of ED's Well known features of AN: • Abnormal cognitions leading to food avoidance and weight loss • Compensatory behaviours e. g. vomiting, laxatives and exercise • Obsessional drive for thinness • Low self esteem and high self-disgust

The neurobiology of ED's Less well known features of AN: ◦ Disturbed reward regulation ◦ Social withdrawal and irritability ◦ Anxiety, depression and self harm ◦ Impaired sense of taste ◦ Raised pain threshold ◦ Impaired social awareness ◦ Unawareness of illness

The neurobiology of ED's Brain structure: in starvation the brain shrinks and there is an increase in CSF to compensate. This is mostly reversible with nutritional restoration Brain function and activity: patients have significantly reduced activity in the antero-medial temporal region. This is not effected by BMI, mood or length of illness and is not reversible.

Neuropsychology of ED’s Some of the key features of AN can be explained by the part of the brain that is affected: ◦ Disordered body image (somato-sensory cortex) ◦ Anxiety (amygdala) ◦ Perfectionism (basal ganglia) ◦ Reward disregulation (nucleus accumbens) ◦ Visio-spatial defects (parietal cortex) ◦ Executive impairments (frontal cortex)

Neuropsychology of ED’s Unlikely that all 6 areas are affected – they are not in comas after all! More likely to be a failure to communicate between these areas The area involved is called the INSULA ◦ This regulates anxiety, appetite, monitors the gut, taste perception, disgust perception, pain perception, social awareness and motivation.

Understanding food phobias - The disgust reaction Maggots, rotten meat, puss-oozing sores – disgusted yet? ◦ This feeling is how patients feel when they have been shown their forbidden foods e. g. cake or bread etc… ◦ Their food phobias are very real and have physiological reactions (increase in pulse, BP and adrenaline) as well as their psychological reactions (avoidance of food and compensatory behaviours etc…)

National Guidelines New NICE Guidelines (NG 69), May 2017: • ‘Eating Disorders: Recognition and Treatment’

National Guidelines • MARSIPAN, Royal College of Psychiatrists, 2014 • Management of Really Sick Patients with Anorexia Nervosa • www. marsipan. org. uk • Create an account and you can get an app too! • Risk matrix and medical monitoring

National Guidelines Junior MARSIPAN, Royal College of Psychiatrists, 2012 Management of Really Sick Patients (under 18) with Anorexia Nervosa

National Guidelines

BEAT advises GP's… Would it be better to wait to see if things get better or worse before referring? • No – patients should be assessed and receive treatment at the earliest opportunity (NICE Rec. 1. 2. 1). There can be serious long-term consequences to delayed referral. Their weight is not dangerously low – should referral be delayed? • No. Eating disorders are mental illnesses, and it is not possible to gauge whether someone has one using only physical parameters such as weight, which may go up, down, or stay the same. No single measure should be used to determine whether to offer treatment (NICE Rec. 1. 2. 8).

BEAT advises GP's The patient is denying there’s a problem. Maybe this is a ‘phase’? • People with eating disorders often struggle to acknowledge or even recognise that they’re ill (DSM 5), and the concerns of those around them should be considered too (NICE Rec. 1. 2. 6). If in doubt, don’t wait – refer to specialists. Who is in the best position to make an assessment? • NICE recommend that anyone with a suspected eating disorder should be referred immediately to a community-based, age-appropriate eating disorder service for further assessment or treatment (NICE Rec. 1. 2. 10).

Initial GP assessment Age: Although eating disorders can develop at any age, be aware that the risk is highest for young men and women between 13 and 17 years of age. Weight: record weight and height as well as any changes in weight (rapid weight loss = greatest risk) Dieting or restrictive behaviours (vegetarianism, veganism, dairy free, wheat free etc…) that are worrying them, family, friends or professionals Social withdrawal, particularly from situations that involve food Other mental health problems or family history of mental health problems

Initial GP assessment Disproportionate concern about weight or shape Problems managing chronic illnesses e. g. Diabetes or Coeliac Disease Menstrual or endocrine disturbances Faltering growth (especially in males) or delayed puberty in children Unexplained electrolyte imbalances or hypoglycaemia Atypical dental wear High risk activities e. g. high level sports, fashion, dance, modelling

When to do an ECG • • • CAMH ask for all patient <18 y rapid weight loss (1 kg a week = high risk) excessive exercise / activity severe purging behaviours, such as laxative or diuretic use or vomiting bradycardia hypotension excessive caffeine (including from energy drinks) prescribed or non‑prescribed medications muscular weakness electrolyte imbalance previous abnormal heart rhythm.

Sensitivities around weighing Weighing these patients can be difficult! Weight is easily manipulated (extra layers, objects hidden, water loading etc…) Knowing weight and changes in weight is key to a physical health risk assessment Top tips! ◦ ◦ Weigh patients in one layer of clothes only After passing urine You can ask them to step on the scales backwards Make no comment

Common medications used in the treatment of ED’s Medication alone is not usually effective in treating anorexia. It is usually only used in combination with therapeutic treatments to treat associated psychological problems, such as obsessive compulsive disorder (OCD) or depression. The main types of medication used in people with anorexia are: ◦ Anti-depressants – e. g. Citalopram, Fluoxetine or Sertraline - can help people with co-existing psychological problems such as depression and anxiety ◦ SSRIs tend to be avoided until you have started to gain weight as the risk of more serious side effects is increased in people who are severely underweight.

Common medications used in the treatment of ED’s ◦ Anti-psychotics – e. g. Olanzapine or Risperidone –can help reduce feelings of anxiety related to issues such as weight and diet in people who have not responded to other treatments. Can help reduce the ‘anorexic voice’. ◦ Antihistamines - e. g. Promethasine. Usually given routinely pre meal or P. R. N. ◦ Benzodiazepines - e. g. Lorazepam. Used in extreme cases as it reduced anxiety and induces sleep. Can be given I. M. ◦ Antiemetics e. g. cyclazine or domperidone. in patients who vomit

Any questions?