Abstract

Early recognition, referral and treatment are essential to achieve good outcomes for children and adolescents with eating disorders. Eating disorders have the highest mortality of all psychiatric conditions. However, provided there is access to early and evidence-based treatment, the majority of patients who are diagnosed with an eating disorder before the age of 18 will make a full recovery. Overall, outcomes in this age group are better than in adults. Anorexia and bulimia have several shared and overlapping features. Thought content is dominated by weight and body shape, which then unduly influence self-evaluation. Associated behaviours such as food intake restriction, over-exercising, vomiting, binging or laxative use stem from a wish to lose or maintain weight, and may occur in either condition. Percentage median BMI (%mBMI) is a better measure of underweight in children and adolescents, as it takes into account both gender and age. A %mBMI below 70% is considered high risk. For many, 85% mBMI or less may be considered significantly underweight; however, for some constitutionally smaller individuals it may not be. All children and adolescents with a possible eating disorder should be referred to their local specialist community-based eating disorder service for children and young people as soon as possible.

Early recognition, referral and treatment are essential to achieve good outcomes in children and adolescents with eating disorders.^1,2,3

Eating disorders have the highest mortality of all psychiatric conditions.⁴ They can develop at any age, but the highest risk is for adolescents aged between 13 and 17.5 Provided there is access to early and evidence-based treatment, the majority of patients diagnosed with an eating disorder under the age of 18 will make a full recovery.⁶ Overall, outcomes in this age group are better than in adults.⁷

Conversely, the longer eating disorders remain untreated in childhood, the harder they can be to treat.⁸ Untreated eating disorders may, in turn, irreversibly affect growth, bone and cognitive development,9 while also having an adverse impact on the wellbeing of parents and siblings.^10,11

Two documents have recently been published that emphasise the importance of early recognition and rapid intervention. The NICE guideline on eating disorders (NG69)⁵ was published in May 2017 and the Access and Waiting Time Standard for Children and Young People with an Eating Disorder (A&WT) Commissioning Guide, in July 2015.¹²

GPs can play a crucial role in the care of children and adolescents with eating disorders, and their families, see table 1. Most importantly, GPs can try to ensure that they get access to appropriate treatment as early as possible.

Diagnosis

DSM-V13 identifies eight types of eating disorder. Anorexia nervosa and bulimia nervosa are probably the two most well known. However, it is the atypical variants, termed other specified feeding and eating disorders (OSFED) and unspecified feeding and eating disorders (UFED), respectively, that are the most common.¹⁴ In DSM-IV these conditions were previously referred to as eating disorder not otherwise specified (EDNOS). There are currently a few subtle differences in diagnostic criteria between DSM-V and ICD-10. However, ICD-10 is being revised and greater convergence between the manuals is likely in the new edition.

Eating disorders are diagnosed by the presence of characteristic thoughts and behaviours associated with evidence of distress, actual or potential harm, and impairment of function, see table 2.

Anorexia and bulimia have several shared and overlapping features. Thought content primarily relates to preoccupation with weight and body shape, which then unduly influences self-evaluation. Associated behaviours seek to lose or maintain weight e.g. food intake restriction, over-exercising, vomiting, binging and laxative use. Any of these behaviours may occur in either condition. The essential difference between the two disorders is that patients with anorexia are underweight, while those with bulimia are not. DSM-V criteria for the two conditions are shown in table 3.

Obesity is not considered an eating disorder, except in a minority of patients where it is part of a binge-eating disorder (BED) presentation. BED is a newly defined condition in DSM-V, which resembles bulimia but without compensatory purging. Binges in BED are associated with emotional

distress. Another new condition is avoidant/restrictive food intake disorder (ARFID). This condition can affect people of all ages and individuals become underweight or nutritionally compromised in the absence of weight and shape concerns. ARFID may be more common in individuals with autism spectrum disorders.¹⁵

Determining underweight

DSM-V no longer specifically defines the BMI at which a patient may be deemed underweight enough to receive a diagnosis of anorexia nervosa.

Body mass index (BMI) in under 18s is less useful as a metric of underweight than in adults: BMI can underestimate or overestimate weight, depending on the child’s age and gender.

Percentage median BMI (%mBMI) is a better measure of underweight in children and adolescents, as it takes into account both gender and age. %mBMI can be calculated as follows:

BMI ÷ mBMI (50th centile on Royal College of Paediatrics and Child Health BMI chart) x 100. Spreadsheets and smart phone apps are also available.

A %mBMI of 70% is considered high risk.¹⁶ For many, 85% mBMI may be considered significantly underweight, however, for some constitutionally smaller individuals it may not be.

Similarly, the concept of a healthy weight can be difficult to define and depends on an individual. For females a key, but not sole criterion, is the weight at which normal menstruation can occur. For all children and adolescents a healthy weight is one that appears to enable normal growth and emotional and physical wellbeing.

Epidemiology

It is estimated that 1.6 per 1,000 females and 0.17 per 1,000 males aged 15-19 are newly diagnosed with an eating disorder each year in the UK.¹⁴

Incidence rates for anorexia and bulimia are approximately equal in this age group at 26/100,000/year. Rates roughly double for both conditions if only females are considered, as eating disorders are much rarer in males. Respective incidence rates for anorexia and bulimia in females are 47.5 and 46.8 per 100,000; this compares with 3.8 and 3.0 per 100,000 for anorexia and bulimia in males.

While eating disorders may be more common in females, Caucasians, and higher socioeconomic groups, these disorders affect people of all cultures, ethnicities and ages.¹⁷ Unfortunately, the majority of patients with eating disorders are not in contact with clinical services. This is especially true for bulimia and binge eating disorder because patients with these conditions may be less likely to be identified as they are not underweight. They are also less likely to seek help since these conditions are associated with high levels of secrecy, shame and stigma.¹⁸ The actual proportion of patients with eating disorders not in contact with clinical services is difficult to estimate.

It is important that GPs consider the possibility of eating disorders in males who, partly due to the combination of delayed help-seeking and under-recognition, often present for treatment at specialist services relatively late.¹⁹

Presentation

Eating disorders may present with a mixture of physical, emotional and social symptoms and concerns as shown in table 4.

Eating disorders rarely present alone and emotional disorders such as anxiety, depression, obsessive compulsive disorder, autism spectrum disorders, and self-harm frequently co-exist.

Where there is a significant mismatch between energy intake and requirements, or starvation, these co-existing conditions may be exacerbated, or even appear to be present when in fact they are not. For example, an individual in a state of starvation may appear to be depressed or autistic, yet nutritional restoration can lead to resolution of these symptoms. Additional diagnoses are therefore usually not made until some time after nutritional balance is restored.

Initially, many children and adolescents with eating disorders may be reluctant and/or unwilling to attend primary care consultations about their eating. Many may feel a strong sense of shame, stigma or fear. This may be associated with worries about having to share information about their eating habits, beliefs about weight and shape and related behaviours such as over-exercising or purging. A minority may present with a sense of anger and indignation, convinced that they do not have an illness.

The majority will be worried about the prospect of treatment. For most, a visit to a GP will be initiated by parents and usually comes at a time when they may not be ready to make changes to their eating. They might feel especially afraid that treatment may herald uncontrolled weight gain, or an admission to hospital.

Assessment

For the reasons described above, assessment of children and adolescents with eating disorders can be challenging especially in primary care. It is important to try to be sensitive, compassionate, and pragmatic.

In primary care it is important to prioritise identification of potential physical risks and symptoms and include as much of this information as possible in the referral, see below.

Ideally, this should also be combined with some brief psychosocial information, see table 4. Junior MARSIPAN (Management of Really Sick Patients with Anorexia Nervosa), is a very useful guide for the evaluation of physical risk in children and adolescents with eating disorders and is available online.¹⁶

An adapted summary of the Junior MARSIPAN risk assessment guidance can be found in table 5.  Screening measures e.g. the SCOFF²⁰ can be useful but are not essential and should not be used on their own as a basis for diagnosis.⁵

Pre-pubertal children may not express worries about weight and shape, either explicitly or even at all, despite their behaviour showing clear attempts to avoid weight gain. An eating disorder should be considered if growth rates appear to be slowing or even stopping. This may be determined by reductions in height and growth centiles on paediatric growth charts, which without intervention, may lead to growth stunting.

If a medical condition is thought to be the most likely cause of underweight, e.g. coeliac disease, but there are still concerns of a possible eating disorder, it is advisable to refer for a specialist eating disorders assessment early rather than wait for the results of the investigations. The combination of type 1 diabetes and an eating disorder can pose particular challenges for both GPs and eating disorders services.

Referral

A key recommendation from the A&WT guidance is that all children and adolescents with a possible eating disorder should be referred to their local community-based eating disorder service for children and young people (CEDS-CYP).

It is important not to use a single measure such as weight, BMI or duration of symptoms to determine if referral to CEDS-CYP is warranted. Presentations of eating disorders in children and adolescents are often atypical and with bulimia nervosa or binge eating disorder, in particular, patients can be average weight or overweight. If there is a high physical and/or mental health risk liaison with the local paediatric ward is usually required.

Key information to be included in the referral includes:

• Current height and weight

• Rate of any weight loss e.g. 3 kg in 3 weeks

• Current estimated food intake over the past week e.g. 800 kcal/day

• Presence and severity of any weight losing behaviours e.g. vomiting, exercise

• Temperature, heart rate, and lying and standing blood pressure

• Phone numbers of parent(s) and/or  patient especially if high risk

• GPs should contact local CEDS-CYP by phone/electronically as soon as a potential eating disorder is identified.

In 2014 new funding was committed for the development of CEDS-CYP across England to speed up access to specialist community-based treatment.

As a result new CEDS-CYP are being created throughout England and additional funding is being given to many existing CEDS-CYP. Funding is contingent on CEDS-CYP offering treatment according to the following target timescales from referral:

• Emergency      24 hours

• Urgent              7 days

• Routine             28 days

By 2020, 95% of referrals will need to be seen within these timescales.¹²

The A&WT recommends that GPs should contact the CEDS-CYP by phone or electronically following discussion with the patient and their parents, as soon as an eating disorder is identified. Where a local CEDS-CYP service has not yet been formed then referral should be to the local CAMHS, and again contact made immediately at the point of identification. In rare cases where there is very high physical and/or psychiatric risk then GPs should arrange immediate paediatric and/or psychiatric care to manage risk via local protocols and should inform the CEDS-CYP immediately.¹²

In order to improve access CEDS-CYP have been encouraged to increase both ease and range of potential referral sources. Services are being encouraged to open dedicated self-referral routes either via phone and/or online for patients and parents. Professionals including paediatricians, CAMHS, school nurses, teachers and social workers can also refer using these routes. 

Services are at different stages in improving access and it is important to check locally about current arrangements. To prevent unnecessary delays we think it preferable to refer before organising blood tests, ECG etc.

Evidence-based treatment

The most appropriate treatment location for the majority of young people with an actual or suspected eating disorder is a CEDS-CYP.²⁰ Referral to a CEDS-CYP should be made directly from primary care or via a self-referral.

CEDS-CYP have an expert multidisciplinary team, offering a range of evidence-based interventions. Treatment should comprise a mixture of psychological interventions, nutritional support and physical monitoring. Treatment may be offered in a mixture of individual, family and group formats. Crucially CEDS-CYP enable young people to receive treatment while living at home, attending school, staying in contact with friends and engaged in hobbies and activities in so far as their physical condition allows. All these factors have been shown to be important in terms of early recovery.

A minority may, however, require admission to hospital when community treatment appears not to be working. Admissions for medical stabilisation and/or re-feeding will be to a local paediatric or adult ward and should usually be less than a week.21 Alternatively, or following this, there may need to be an admission to an eating disorder unit or adolescent psychiatric unit.

While admissions for eating disorders are effective in the short term, they are often exceedingly long and have high rates of relapse and readmission.^22,23 Emerging evidence suggests that day patient services can provide more cost-effective alternatives to inpatient eating disorder unit treatment when more intensive treatment is required.²²

The A&WT guidance recommends ‘that unless medical or psychiatric risk is very high, early admission should be avoided and day patient or community care offered in the first instance.’

NICE recommendations for psychological treatment of eating disorders in children and adolescents in CEDS-CYP or eating disorders units are summarised in box 1.

Some young people with co-existing conditions may require psychotropic medication. This may include antidepressants, sleeping tablets and low-dose antipsychotics e.g. olanzapine. The latter has been found to be helpful in reducing anxiety, and the frequency and severity of eating disorders thoughts, while stimulating appetite.24 Medication should never be a sole treatment for eating disorders.

Ongoing monitoring and management in primary care

Following referral, larger CEDS-CYP, especially those with close and effective links with local general hospitals, may take responsibility for organising, monitoring and managing all aspects of any necessary investigations. This may be different from arrangements with adult eating disorders services, where GPs are required to play a more active role in investigating and monitoring. Smaller and/or newer services are likely to require a shared care approach with primary care that is closer to arrangements with adult eating disorders services (see table 1).

Although most CEDS-CYP will initiate and titrate psychotropic medication e.g. antidepressants to therapeutic doses, they will need GPs to take over subsequent prescribing. The usual arrangement ageed is that the CEDS-CYP takes responsibility for monitoring mental state, level of risk, treatment response and adjusting doses as required, communicating any changes with primary care.

Similarly, CEDS-CYP also often require GPs to prescribe nutritional supplements e.g. Ensure and Fortisip, as these may not be included in outpatient formularies. Supplements are occasionally required when patients are most unwell and partially or completely refusing normal food.

Children and adolescents who have been discharged from CEDS-CYP do not need specific monitoring for their eating disorder from primary care unless specifically requested by the CEDS-CYP. Since re-referral should now be much quicker and easier following the new A&WT standards, if a patient were to relapse they can contact their CEDS-CYP or GP to seek re-referral and should be seen by a CEDS-CYP between 24 hours and 28 days.

However, there may be ongoing concerns about growth or physical wellbeing e.g. menstruation has not resumed after several months despite weight restoration and improvement in eating disorders symptoms, or a patient may have been discharged on antidepressant medication which will eventually need to be discontinued.

In these cases further monitoring in primary care is required. This will usually be requested by the CEDS-CYP.

For the minority of patients who require transfer to adult eating disorders services, it is important that arrangements are made early. Local protocols should be developed to ensure that transition can be as smooth as possible.

Some services are developing all age eating disorders services to optimise transition. The relative merits of all age eating disorders services compared with CEDS-CYP have yet to be established.