Last week, federal health minister Greg Hunt announced that more than 60,000 Australians will be asked about their mental health and well-being as part of the Intergenerational Health and Mental Health Study.
The mental health survey will be run in 2020, with new data on how common mental illness is due the year after. This is a welcome announcement for the mental health sector, because information gathered in a survey like this can be used to shape policy reform.
But eating disorders, a major category of mental illnesses, have been neglected by all previous important data collection initiatives in Australia so far. Notably, they were missing from the last national mental health surveys in 1997 and 2007.
Eating disorders are not yet an official part of this new survey, but we understand they are being considered.
If people with eating disorders are not counted, they don’t count. In other words, we need to know who has these severe and debilitating conditions, and then work towards improving the treatment and supports available for them.
National surveys ask the public if they have experienced symptoms of various mental illnesses, either in their lifetime or during the past 12 months.
People who answer “yes” to particular clusters of symptoms are “diagnosed”, or assumed to have had the illness.
Asking the public about their symptoms is the best way to understand how common mental illnesses are. This is because most people with a mental illness don’t seek treatment and may never have had a diagnosis. So collecting data from health services or based on reported diagnoses doesn’t provide a full picture.
Also, for some mental illnesses, such as anorexia nervosa or psychosis, people might not realise they have a diagnosable illness. But they are likely to respond “yes” to direct questions about their experiences with body dissatisfaction or thinking difficulties.
A person with anorexia nervosa engages in dangerous behaviours to maintain a very low body weight, or to lose more weight. Although most people have heard of it, anorexia is not common. We know this from other countries who have previously studied the prevalence of anorexia in community surveys.
Other eating disorders include bulimia nervosa, binge-eating disorder, and “other specified feeding and eating disorders” (OSFED), a catch-all group for those who don’t fit anywhere else.
Those with bulimia compensate for binge-eating through vomiting, fasting, exercise or other methods, while those with binge-eating disorder do not.
Binge-eating disorder is the most common of all eating disorders and occurs more equally across men and women than other eating disorders.
As well as continued weight gain, people with binge-eating disorder are more likely to experience depression and anxiety, and other significant health problems (such as asthma, diabetes, and arthritis) than people with a high BMI (body-mass index) but no binge-eating disorder.
One example of OSFED is atypical anorexia nervosa – when someone shows all the symptoms of anorexia and has lost a significant amount of weight but their BMI is in the “normal” or “high” range.
People with eating disorders often have a negative body image, and a strong perception their self-worth is tied to their appearance or body weight.
Every year in Australia, millions of years of healthy life are lost because of injury, illness or premature deaths in the population. This is known as “burden of disease”.
Like national surveys, burden of disease studies are extremely important for planning and funding health services. They use prevalence statistics, or how many people per 100,000 Australians are assumed to have a particular illness. Given we don’t have good data on how prevalent eating disorders are, we likely underestimate their burden of disease.
The recently released Australian Burden of Disease Study 2015 lists eating disorders among the most burdensome illnesses for Australian females, being the tenth leading cause of total burden of disease for females aged 5-14 and women aged 25-44.
Importantly, the most common eating disorder – binge-eating disorder – is not included in burden of disease studies, meaning all these figures miscalculate the impact of eating disorders by a long way.
Despite our lack of prevalence data, there is evidence showing eating disorders are an increasing problem and should be regarded as a national priority.
Consecutive population surveys in South Australia showed the numbers of people with eating disorders climbed over a ten-year period.
Annual youth surveys demonstrate body image, the most potent risk factor for eating disorders, is year after year among the top concerns for young people.
A recent study on adolescents in the Hunter Valley region of NSW found one in five had experienced an eating disorder.
People with eating disorders use more health services than people with all other forms of mental illness, but often don’t receive appropriate and effective treatment. They typically receive treatment for weight loss, depression or anxiety, but are rarely treated for their disordered eating.
Eating disorders were estimated to cost the health system A$99.9 million in the year 2012 alone.
Better treatment and prevention of eating disorders would reduce the cost and the burden of disease. But we need the data to show where the treatment gaps are and how to fund better services.
There are many promising elements of the proposed Intergenerational Health and Mental Health Study. These include surveying multiple people in a family, gathering physical and mental health data, and a target of more than 60,000 Australians. But it’s time eating disorders were included.
Eating disorders are complex mental illnesses that have one of the highest death rates of any psychiatric disorder. Among people with anorexia nervosa – who commonly deprive themselves of food due to an obsessive fear of gaining weight – this rate is more than five times greater than in the general population.
All eating disorders are associated with significant, wide-ranging physical health complications such as starvation, cardiac arrest (sudden loss of heart function), kidney problems, food intolerance and fits. These are among the leading causes of hospitalisation for mental-health-related issues in Australia.
Because serious medical complications so frequently accompany eating disorders, they defy classification solely as mental illnesses. They should be viewed as complex health-care issues requiring urgent and multidisciplinary care.
Yet many health-care providers have not been provided with enough basic education and training to be able to recognise and respond appropriately to someone presenting with an eating disorder. So despite their severity, eating disorders often go unrecognised.
This leads to substantial economic costs for the Australian health system and devastating effects for sufferers, loved ones and the communities that surround them.
Eating disorders have been around through recorded history. Even an ancient Egyptian tomb painting depicts a noble self-inducing vomiting.
There are several types of eating disorders. These include anorexia nervosa, bulimia nervosa and binge eating disorder. Collectively, these are characterised by abnormal eating behaviours, poor body image, overemphasis on weight and shape, and extreme weight-control behaviours.
In the case of anorexia, such behaviours lead to severe weight loss and often life-threatening complications. Vomiting, laxative abuse and excessive exercise can be features of both anorexia and bulimia, as can binging and purging.
Unlike the severe weight loss associated with anorexia, bulimia is characterised by the presence of binging and usually purging at a relatively normal weight. Binge eating disorder features frequent binging, in the absence of purging or other compensatory behaviours, which often leads to significant weight gain.
There are psychological, environmental and biological (including genetic) risk factors for developing eating disorders. A genetic predisposition in combination with poor body image is one of the strongest predictors of disordered eating.
Poor body image has been reported in nearly half of Australian women and over one-third of Australian men. Disturbingly, the rate of body-image concerns is even greater in children and adolescents. A study of Australian children found up to 61% of girls and boys between the ages of eight and 11 are trying to control their weight.
Around 10% of the Australian population will experience an eating disorder in their lifetime, and the rate is increasing. For example, one study observed a two-fold increase in disordered eating between 1995 and 2005 in South Australia. And a more recent study in the same state observed a more than two-fold increase in extreme dieting and binge eating between 1998 and 2008.
While the reasons for this increase have not yet been fully explored, they may be related to increasing concerns about weight in the general Australian population.
Contrary to the long-held belief eating disorders are the domain of wealthy young females, the greatest increase has been observed in older people, males and those in lower socio-demographic groups.
This may be due, at least in part, to inadequate access to treatment, differences in people seeking treatment, or detection in under-represented groups, and stigma surrounding the development of a disorder commonly associated with a specific (different) group in the community.
A number of evidence-based treatments are available for eating disorders. It is important to note that no single approach will be effective for all individuals.
Structured, psychological therapies are considered the cornerstone of treatment for eating disorders. For adolescents with anorexia, this takes the form of family-based therapy. This involves helping the whole family support the person with the disorder.
In adults with eating disorders, evidence shows a minimum of 20 sessions of cognitive behaviour therapy (CBT) – which challenges learnt ways of thinking – is necessary. In severe cases of anorexia, at least 40 CBT sessions that include a strong emphasis on restoring healthy eating attitudes and behaviours are required.
A multidisciplinary team is best equipped to address the complex nutritional, medical and psychological needs of someone with anorexia.
The total social and economic costs of eating disorders in Australia exceed A$69 billion per year. These costs can be reduced with early detection.
Most people with eating disorders go a long time before receiving adequate care. One study of over 10,000 adolescents found that, while nearly 90% of those with an eating disorder contacted a service provider for help, in only a minority (3-28%) of cases were the services specifically for their eating disorder.
Factors such as denial, shame, stigma and a lack of recognition of eating disorder symptoms by health-care professionals are likely contributors to this discrepancy.
Medicare provides Australians with funding for ten sessions with an allied mental-health professional (such as a psychologist or social worker). This is below the minimum treatment recommendation of 20 sessions for all eating disorders.
We should not accept a system that prevents people with a severe life-threatening mental illness from accessing a treatment that is available, effective and will save costs in the long term.
Federal Health Minister Greg Hunt recently requested the Medicare Benefits Schedule Review Taskforce investigate increasing Medicare coverage to treat people with an eating disorder. We urgently need early identification of eating disorders and the delivery of quality, targeted treatments at evidence-supported durations.
This article was co-authored by Tina Peckmezian, Principal Research Officer at The Butterfly Foundation.