GP blog: Identifying eating disorders early in the primary care setting

Why identifying eating disorders early is important

In common with a lot of mental health difficulties, the longer an eating disorder is left unaddressed, the more difficult it can be to treat: thinking patterns become more engrained and behaviours become more established, meaning it can be harder to shift these into a recovery phase. An early detection can really help to smooth the process of recovery, making it less prolonged and less complicated.

It’s also important to highlight something that, in the field of mental health difficulties, may be particularly unique to eating disorders: there are many physical changes and physical consequences that can happen as a result of eating disorders which create complexity. There can be impacts, for example, on the gastro-intestinal system. For people who have not been eating in a regular fashion, when they are trying to recover and start bringing back regular eating, there can be difficulties with nausea, gastritis, reflux, constipation or feelings of being extremely full. These physical impacts are one reason why detecting eating disorders early becomes important, before it gets more difficult for the person to take on the requirements of recovery.

Bone density can also be a concern, particularly in certain eating disorders where there are restrictions on the amount of food being taken in. Problems with bone density can lead to fractures or disabilities in later life. This is one of the few physical manifestations of eating disorders that is quite difficult to reverse if it’s not caught early enough, so it creates a sense of urgency to begin treatment early.

There's also increasing evidence that suggests actual physical and structural changes take place within brain tissue relating to eating disorders. It can be seen that neurotransmitter pathways are changed in relation to stimuli around food or body image. Evidence so far suggests that some of these changes can be reversed with recovery, but some can persist. Even in the context of recovery, some residual, or continuing, changes remain. This again underlines how getting early support is important.

What the barriers to early intervention can be

Research shows treating an eating disorder within the first three years may offer a higher chance of recovery. Recent analysis found that, internationally, the duration of an untreated eating disorder is currently two and a half years for anorexia, four and a half years for bulimia, and up to six years for binge eating disorder. These long periods of time between the beginning of an eating disorder and treatment for it indicate significant barriers to early intervention.

Personal barriers

Intrinsic factors

The most significant personal barriers to early detection and support are intrinsic factors related to the person themselves, including self-stigma, denial and guilt. Lack of problem recognition can be a very real issue. Often, a person may have limited awareness of their illness, or may deny its severity. They may feel a lack of motivation to seek help for an eating disorder, which can come from several reasons. The person, for example, may not believe that the problem is serious enough to need treatment, or they may believe that others aren’t actually able to help and that they should be able to help themselves. Stigma and shame were also very often identified in studies around people not seeking treatment.

Fear of losing control

Often, people can experience eating disorders in silence or hide their illness. Where there are signs of weight loss, for example in anorexia, the person may wear baggy clothes to try to hide this. With binge eating disorder, they might hide food or empty wrappers in their rooms. These behaviours are frequently related to and help to maintain a fear of losing control. Getting help or support can feel like a loss of control to the person.

Life commitments

Not having enough time, complex life circumstances, and instability have also been described by people as barriers to treatment and engagement. Other people may need treatment to be scheduled to avoid work shift patterns and family commitments.

Financial barriers

We can't forget that financial barriers exist. Often, there can be a lack of affordability of services, particularly some private or specialist services.

Service-related barriers

Narrow criteria

There can be quite a narrow referral criteria for eating disorders for specialist care, particularly for less common eating disorders, such as binge eating disorders or avoidant-restrictive food intake disorders. Sometimes, there is a weight threshold for accepting anorexia nervosa referrals. This all leads to reduced ability to detect and treat these eating disorders.

Limited screening

A study has found that eating disorders are rarely assessed among people seeking treatment for other psychiatric conditions. The study showed there were increased symptoms of bulimia among people with anxiety and depressive disorders that had not been identified in routine mental healthcare. Given the higher rates of eating disorder symptoms among people seeking routine psychiatric services, it is worth building screening for eating disorders into routine mental health assessments to help with early intervention.

In addition, in the general hospital setting, there was a 16% prevalence of eating disorders among people seeking emergency department services in one American study, which is much higher than the 5% prevalence we would expect in the general population. Therefore, emergency department presentations could be another important step in identifying people with eating disorders so that we can enable them to be referred to specialist services.

Waiting times and non-attendance

There can be long waiting times for treatment. This can increase non-attendance: a study found that 26% of people missed their first appointment when referred to a major eating disorder unit in London. This non-attendance has cost implications and also impacts on healthcare resources as it creates losses for administrative and clinical time. Further non-attendance has also been linked to poorer outcomes for patients.

Drop-out levels

There can also be high levels of dropouts following initial assessments or appointments. A number of factors have been identified relating to people’s decisions to miss eating disorder treatment appointments. Long treatment waiting times is one of the key factors, as these periods of waiting can demotivate people by reducing their readiness for change after the initial contact period. It's estimated that, for every week that passes between a referral and initial appointment, the chances of a person attending their appointment decreases by 15%.

Lack of choice

Lack of choice around services can also be a barrier to treatment. People with eating disorders are individuals and it's not a case that every treatment fits well with every person, whether that be inpatient treatment, outpatient treatment or a combination of both.

Healthcare system barriers

Access to services

Often, there can be quite irregular access to eating disorder services. As well as that, there is a separation of child and adolescent mental health services and adult eating disorder services, which affects continuity of care. For example, for people who develop anorexia, that typically happens in late adolescence and early adulthood, so there is a transition period between child and adolescence and, in turn, child and adult services, which can disrupt treatment and be a barrier to detection and intervention.

Staffing

There can be a lack of staff with expertise in eating disorders, which means that staffing levels in the healthcare system can be a barrier to detection and treatment also.

Funding

There can be low funding for eating disorders services and few grant applications for eating disorder research available. This is a field that does need to be expanded on if we are to improve our detection and intervention rates.

What kinds of primary care screening tools are helpful

In most European countries, access to specialist eating disorder assessment and treatment follows from contact with a primary care clinician, such as a GP. A recent study across seven European countries showed that an overwhelming 92% of people with an eating disorder do not access specialist eating disorder care directly, but rather through primary care. Almost 25% of the patients in the study were referred into treatment by GPs. Patients saw an average of two healthcare professionals before being referred into specialist eating disorder care. Ultimately, this demonstrates the important role that non-mental health or non-eating disorder specific professionals play in the early detection and management of eating disorders and in referring patients for specialist care.

However, we know that eating disorders are being under-diagnosed in primary care settings. Primary care clinicians typically have minimal training in eating disorders and can have difficulty in identifying, diagnosing or managing them. Primary care clinicians also report greater awareness of diagnostic criteria for anorexia and bulimia, compared to other diagnoses, such as binge eating disorder or avoidant-restrictive food intake disorder, also known as ARFID.

In a United States study of frontline medical providers, including GPs and nurse practitioners, almost 80% reported feeling unsure of how to treat eating disorders, and 92% of respondents believed that they had missed an eating disorder diagnosis. In a survey by Beat, the United Kingdom’s eating disorder charity, almost 70% of respondents with lived experience of an eating disorder felt that opportunities for early intervention were missed by their GP and 92% also felt that their GP would benefit from more eating disorder-specific training.

The importance of primary care training was highlighted in a recent Australian study which examined an approach to increase eating disorder screening among GPs. A training programme was developed, aimed to strengthen awareness of eating disorders and knowledge about how to refer patients into specialist treatment, and to provide practical tools to facilitate the referral process. GPs were provided with a simple referral procedure and electronic screening tool, as well as information on how to screen. After the programme, GPs reported feeling more confident in their ability to identify and support people with an eating disorder. This led to an almost threefold increase in eating disorder referrals, which is important as part of the early, detection and intervention process.

Three commonly used screening tools used in primary care are explored below.

SCOFF

SCOFF is an acronym used for a questionnaire to screen for eating disorders, made up of five questions.

1. Do you make yourself Sick because you feel uncomfortably full?
2. Do you worry that you have lost Control over how much you eat?
3. Have you lost more than One stone (14 pounds or 6.35 kilograms) in a three-month period?
4. Do you believe yourself to be Fat when others say you are thin?
5. Would you say that Food dominates your life?

A result is positive for this questionnaire if the person responds “yes” to two or more of the five questions. A positive result indicates that an eating disorder might exist and that further rigorous clinical assessment is required. One of the good things about SCOFF is that it's quite a useful way for opening discussion with someone about the possibility of an eating disorder and it provides some prompts that could be used for that discussion.

Two or more “yes” answers have a 100% sensitivity and 87% specificity for an eating disorder. Sensitivity of a questionnaire refers to the proportion of people with the illness who will have a positive result. A highly sensitive questionnaire like this is one that correctly identifies someone who has this condition. On the other hand, the specificity is a proportion of people without the illness who will have a negative result, and a highly specific test can be used for ruling in those with the illness. Therefore, SCOFF does have both high sensitivity and specificity for early detection and intervention of eating disorders.

A further two questions can be added to SCOFF with high sensitivity and specificity for bulimia nervosa as well, with this tool known as SCOFF-SS when the questions are added. These questions again are not diagnostic, but they would indicate that further questioning and discussion is required. These questions are:

1. are you Satisfied with your eating patterns?
2. do you ever eat in Secret?

Eating disorder screen for primary care

A second screening tool is the eating disorder screen for primary care. Again, this asks five questions:

1. Are you satisfied with your eating pattern?
2. Do you ever eat in secret?
3. Does your weight affect the way you feel about yourself?
4. Have any members of your family suffered with an eating disorder?
5. Do you currently suffer with, or have you ever suggested in the past with, an eating disorder?

The questions are quite short screening tools, which is useful. This makes it easier to broach the topic maybe in a first meeting with a person as well.

A “no” answer to question one is classified as a normal response. A “yes” answer to questions two to five is classified as an abnormal response, which does indicate a need for further assessment. This questionnaire is particularly useful because it incorporates a way for the clinician to ask about past history of eating disorders and family history of eating disorder.

Eating Disorder Examination Questionnaire (EDEQ)

The EDEQ is a self-report questionnaire providing a measure of the range frequency and severity of eating disorder behaviours. Again, it's not a diagnostic tool, but information from this questionnaire can assist in forming an opinion of diagnosis and the person's answers can form useful prompts again for further investigation.

It's a 28 item self-report questionnaire that can be completed online or is available in print format. It asks about restraint, eating concern, shape concern and weight concern. It gives an overall global score, with higher scores indicating more problematic eating difficulties.

The questionnaire looks at events over the past 20 days or four weeks, asking various questions relating to restricting food, excluding food, following diet rules, and so on.

References

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Ambwani S, et al. (2020) A multicenter audit of outpatient care for adult anorexia nervosa: symptom trajectory, service use, and evidence in support of “early stage” versus “severe and enduring” classification. Int J Eat Disord, 53(8):1337–1348.

Austin A, et al. (2021) Duration of untreated eating disorder and relationship to outcomes: a systematic review of the literature. Eur Eat Disord Rev, 29(3):329–345.

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