By HUNNA WATSON
Published: March 13, 2014
The Helping to Outline Paediatric Eating Disorders Project, termed the HOPE Project for short, was established to provide crucial knowledge and insight into eating disorders in children and adolescents. The project is a prospective clinical registry of over 1,000 young people (91% female, aged 4 to 17 years) referred to an eating disorder clinic. Colleagues and I established the project at Princess Margaret Hospital for Children in Western Australia, the only public (i.e., free) service for young people with eating disorders in the state. The project was debuted in a peer-reviewed journal – Journal of Eating Disorders. Data collection started in the 1990s to fulfil a gap where science was − and still is − direly needed to determine the best treatment for young people with eating disorders. We recognized the clinic as a key setting for studying eating disorders, given the stigma and barriers to recognition and recruitment in the community. In addition, our clinic housed researchers with expertise in psychology, psychiatry, and dietetics, and we wanted to be informed by and to inform practitioners at the grassroots level. Through the valuable contributions of young people, their families and all those involved, the HOPE Project is working to improve eating disorder outcomes for children in Perth and around the world.
We still have plenty to learn about eating disorders in children and adolescents. The public all too often underestimates the severity of eating disorders, thinking that they are a phase or about vanity, but this could not be further from the truth. Eating disorders are serious, distressing illnesses with physical risks and are based on psychological, sociocultural, and genetic determinants. They affect 1 to 2 out of 100 young people (0.3% for anorexia, 0.9% for bulimia nervosa). They may have serious and irreversible consequences, particular if not treated early. Disruption of vital signs − pulse, body temperature, blood pressure, blood circulation is relatively common. HOPE Project data show that 45% of males and 34% of females with eating disorders have at least one abnormal vital sign. Bone health can be permanently impaired (osteoporosis) by inadequate nutrition, and cardiac and gastrointestinal complications may manifest. Hospitalization may be warranted to preserve life, or to provide care in the context of psychiatric comorbidity. As well as physical impairment, these illnesses are commonly accompanied by anxiety and depression, and self-harm and suicidality. HOPE Project data found that by the time young people with eating disorders were referred to our specialist setting, over 10% required acute psychiatric hospitalization, usually for suicidality.
Some of the HOPE Project findings to date have focused on improving assessment methods. A study on clinical assessment interviewing found that parents and young people may provide different but complementary information. While sometimes parents have difficulty recognizing the extent of behavioral symptoms, such as excessive exercise, and purging which is typically carried out in secret, they may report on psychological symptoms, such as fear of weight gain that the young person with anorexia nervosa does not self-report. The HOPE Project has also provided normative data on a commonly used anxiety inventory to assist clinicians to interpret anxiety scores in this population, and normative data on a depression inventory is forthcoming. The HOPE Project has underscored the additional difficulties faced by young people with eating disorders who live farther from specialist services, highlighting the importance of addressing the needs of children and families in rural and remote areas. Knowledge about symptoms of eating disorders applied to children and adolescents is largely a downward extension of adult-based research; the HOPE Project has provided detailed large-sample information in a study on the clinical presentation of children and adolescents, including a comparison among these age groups. The study setting has also shown the promise of parent skills-based training, an intervention designed to enhance parent’s skills in in caring for a loved one with an eating disorder and to reduce carer distress.
We know the HOPE Project will continue to contribute valuable knowledge that will have long lasting influence on clinical practice in the treatment of eating disorders in young people.