A School of Public Health professor has been extensively researching eating disorders in the United States and has found trends that warrant increased screening for the disorders, she explains.
In 2018, Tomoko Udo, assistant professor of Health Policy, Management and Behavior, conducted the first large-scale study on the prevalence of eating disorders in the U.S. since changes were made to diagnostic criteria, using the 2012-2013 National Epidemiologic Survey on Alcohol and Related Conditions Third Wave (NESARC-III).
She has since expanded that research with three major studies, finding that only half of people with eating disorders seek help, that certain demographics are less likely than others to seek help, and that persons with eating disorders have a five- to six-fold higher risk of suicide attempts.
Low rates of help-seeking
Eating disorders are associated with numerous medical complications and psychosocial impairment and as a result, it is crucial that people with these disorders receive treatment, explains Udo.
Working with colleagues at Yale University and published in Mayo Clinic Proceedings, Udo looked at a nationally-representative sample of 36,309 adults through NESARC-III and found that only half of people with eating disorders reported seeking help.
Estimates for seeking help for three different disorders – anorexia nervosa, bulimia nervosa, and binge-eating disorder – were 34.5 percent, 62.6 percent and 49 percent, respectively. Overall, fewer than 30 percent of those with eating disorders reported seeking help from a counselor or psychologist.
Men and ethnic/racial minorities in particular were much less likely to seek help than women or whites for binge-eating disorder, characterized by overeating in a discrete time-period with a loss of control at least once per week for three months.
Hispanics were also less likely to seek help for anorexia nervosa.
“These sex differences may be due to the expectation that eating disorders primarily affect young white women, which may lead to heightened stigma surrounding eating disorders for men or ethnic/racial minorities and discourage seeking treatment,” said Udo.
Elevated risk of suicide attempt
Although rates of suicide are increasing in the U.S., until now little epidemiological research has examined how eating disorders may be related to suicide attempts. Udo and Master of Public Health student Sarah Bitley, published in BMC Medicine, found that adults with eating disorders have a heightened risk of suicide attempts.
They again studied the nationally-representative sample of 36,309 adults through NESARC-III, which included information on eating disorders and medical history such as suicide attempts.
Information was gathered from participants via in-person semi-structured diagnostic interviews.
Results showed that those with eating disorders had a five-to-six-fold higher risk of suicide attempts compared to those without eating disorders and those who had anorexia nervosa – binge/purge subtype had an especially high risk of suicide attempt.
Respondents with binge-eating disorder and bulimia nervosa who had a history of a suicide attempt reported an earlier eating disorder onset and most of those with binge-eating disorder reported having the disorder before their first suicide attempt.
Placing too much value on weight or shape may increase severity
Binge-eating disorder was added to the diagnostic and statistical manual for mental disorders in 2013 (DSM-5), Udo notes. Placing too much value on body shape or weight, or overvaluation of weight/shape, is part of the diagnostic criteria for bulimia nervosa – but not binge-eating disorder.
Studies with a patient sample showed that this overvaluation could impact the severity of a person’s binge-eating disorder. Udo and her team investigated whether similar differences may exist in individuals with binge-eating disorder in the general population.
Eating disorders are associated with numerous medical complications and psychosocial impairment and as a result, it is crucial that people with these disorders receive treatment, explains Udo.
The study included 207 respondents from the NESARC-III who met criteria for binge-eating disorder or bulimia nervosa in the past 12 months.
Published in Obesity journal, roughly half of those with binge-eating disorder reported placing a higher value on their weight or body shape.
This overvaluation was associated with greater severity of the disorder, as those participants reported more impairment in normal activities and problems getting along with others. In addition, those who had overvaluation were more likely to report having serious problems in their every day lives.
“Our findings suggest that overvaluation could signal more severe cases of binge-eating disorder, and thus is important to assess,” said Udo.
“Those with binge-eating disorder who report overvaluation of shape/weight may require more intensive treatment and may benefit from treatment that specifically addresses their body image over other factors.”
Eating disorders are serious conditions of increasing prevalence among young people.1 In the UK, out-patient treatment2 was historically delivered in generic child and adolescent mental health services (CAMHS) or highly specialised eating disorder services, with significant regional variation in provision.3
Although there is growing evidence about the efficacy of particular treatments,2 our knowledge about the impact of different clinical settings on treatment outcomes is limited. Studies suggested that specialist service provision may lead to better case identification, greater consistency of care and be more cost-effective,4–7 but the data are limited. In England, there has been recent investment in specialist community eating disorder services for young people in all regions,8 the impact of which is unknown.
These developments are contemporaneous with increasing emphasis on patient-led recovery approaches to eating disorders as well as patient and carer participation in service design, for which data on patient and carer perspectives are important.
Qualitative research can facilitate a better understanding of what patients perceive as optimum care.9 In the field of eating disorders such understanding mostly comes from qualitative studies in adults, with research on adolescents’ perspectives of treatment and recovery more recently emerging. Previously identified themes highlighted the role of family, peers and professionals, family therapy, the in-patient setting, emphasis on physical versus psychological aspects and conceptualisation of recovery among adolescents with anorexia nervosa.10 Most previous qualitative research has focused on anorexia nervosa rather than broader eating disorder diagnoses.11 However, current service provision does not typically provide distinctive care pathways or services for different types of eating disorders. Research also focused on experiences of specific treatment settings, particularly in-patient care and parallel exploration of young people’s and parents’ perspectives is limited. Greater satisfaction with treatment and more positive experiences of family therapy have been reported by parents compared with adolescents with anorexia nervosa.12 Our study aimed to explore young people’s and parents’ experiences of care for eating disorders, both positive and negative, across various treatment settings and the ways care could be improved by using thematic analysis. We hypothesised that, despite the ego-syntonic features often encountered in eating disorders, young people want good care towards recovery, and their views would be similar to those of parents on what constitutes good healthcare.
Participants’ experiences of type, availability and quality of care were mixed. Positive experiences often concerned care addressing physical health needs, alongside sporadic reports of treatment tailored to individual needs, consistency from keyworkers, a good therapeutic relationship, contact with eating disorder specialists and peer support. Common negative experiences, however, suggest a raft of limitations with service provision and the need for change. It is clear that some participants were not offered or accessing an evidence-based psychological intervention. Identification and clinical management appeared dominated by a young person’s weight, linked in some cases to professionals’ understanding of eating disorders and service thresholds for referral and treatment. Clinical practice thus seemed to contradict the advice some professionals gave to participating young people to stop thinking about diet and weight.
Participating young people and parents’ negative experiences are consistent with the findings of an cross-national (USA, UK) survey in adults with eating disorders highlighting the limited availability and inequity in geographical distribution of services, lack of knowledge of eating disorders among GPs, limited access to care unless severely underweight and long waiting lists in the UK sample.14 Qualitative exploration among adult patients portrays recovery from eating disorders as a wider phenomenon that goes beyond weight restoration.17 Suggested strategies to address control issues and ambivalence towards treatment in adult patients include consideration of wider psychological issues and a sensitive approach, linked to specialist expertise.18
Similarly, issues around priority given to physical over psychological recovery, lack of individualised care and need for sensitivity from healthcare staff were noted in a number of qualitative studies of adolescents’ experiences of in-patient treatment (as well as out-patient treatment in one study) for anorexia nervosa.19–24 Both a positive and a negative impact of peers on adolescents’ recovery from anorexia nervosa in an in-patient context has been described.12,19,20,24,25 It is worth noting that almost all of these studies were published more than 10 years ago. Qualitative explorations of parents’ experiences of their child’s care for eating disorder, also dating back 10 years or more for most studies, highlighted the importance of personalised intervention26 and specialist knowledge in eating disorders.12,27 Peer support for parents has been supported in the literature, sometimes reported as one of the most helpful aspect of care.27,28
The main contributions of our study stem from bringing together the combined experiences of young people and parents of treatment in multiple services, and the emerging emphasis on psychological aspects of eating disorders from very early stages and having appropriately trained professionals working across a wide range of services rather than a single specialist service. Qualitative investigations into the meaning of anorexia nervosa to adolescent and adult patients support psychodynamic and cognitive theories of its connection with the development of individuals’ own identity and control systems, with a subsequent impact on their help-seeking behaviour and treatment outcome.29
Furthermore, a recent qualitative synthesis into the perspective of recovered adult patients suggested four dimensions of psychological well-being – positive relationships with others, self-acceptance, autonomy and personal growth – and self-adaptability/resilience as fundamental criteria for eating disorder recovery in addition to symptom remission.30 In a study using a multidimensional recovery model, adults with eating disorders placed more emphasis on the combined psychological, emotional and social functioning and evaluation of one’s own appearance criteria compared with clinicians.31
In line with these findings from the adult literature, our study highlights two important aspects in addressing the psychological well-being criteria for recovery and the development of a ‘healthy’ identity in young people with eating disorders, according to both patients and parents: an earlier consideration of psychological aspects of these conditions that should start at identification in primary care and referral to specialist treatment, as well as enhanced professionals’ knowledge of eating disorders and attitude towards patients and families across all levels of care.
Eating disorder services for children and adolescents in England have received a significant investment, and are undergoing major restructuring,8 which should address many of these concerns, in particular timely access to psychological interventions independent of weight status. Our findings support the importance of these changes to improve the quality of patient and parent experience, regardless of the cost-effectiveness arguments. However, these standards are not yet applicable to adult eating disorder services, which remain patchy and underresourced. Eating disorder services in Wales are currently subject to a major review for which this study provides timely evidence.
Gaps in health professionals’ ability to recognise and treat eating disorders and the negative attitude that some express towards individuals with eating disorders have been previously highlighted as more prevalent compared with other mental or physical illnesses.32,33 Our findings are in line with a recently published report highlighting the poor experience of mental health services often encountered by children and young people in the UK.34 Others have reported short comings in service provision and suggested strategies for a more consistent and smooth transition to adult mental health services, tailored to the young person’s needs and taking into account other simultaneous life changes.35,36
Strengths and limitations
This study recruited a national sample of young people and parents not bound by setting or treatment group. It used synchronous online discussion (i.e. all focus group members temporally co-present) that has recognised similarity to a traditional, face-to-face focus group,37 but has the advantage of providing an anonymous online environment. This has previously been identified as preferable by young people when discussing sensitive topics because of its private and less judgemental nature.38 The young people’s age range ensured access to experiences of both child/adolescent and adult services as well as the transition.
The gender imbalance and preponderance of anorexia nervosa are a likely effect of the means of recruitment and self-reported diagnosis, although it is consistent with anorexia nervosa being the dominant presentation of eating disorders to CAMHS services.
The recruitment and data collection methods limited participation to consenting older young people and also meant that individuals with easier access to and familiarity with internet use were more likely to participate.
Findings may therefore not pertain to all young people with eating disorders and their carers, particularly younger children, males and those from ethnic minorities, and may not generalise to non-UK healthcare settings. Methodological issues around gender and ethnicity imbalance in this field have been previously reported.19,20,23
Our recruitment may have skewed the perspective towards negative experiences. Most participating young people were over 18 years of age at the time of the study, had relatively long illness durations and experienced treatment in multiple services, often in-patient or day services, with likely poor initial response to treatment.
More than half of them were no longer receiving treatment at the time of the study. Although potentially allowing for more reflective accounts, our sample characteristics may explain the differences between our findings and those of Roots et al,12 which were more positive, particularly regarding specialist services.
Their study included adolescents with an average duration of illness of just over 1 year, thus perhaps better representing the patient population in child/adolescent services with relatively short illness duration, good response to out-patient treatment and no need of in-patient care or transfer to adult services.
The two studies thus provide different, complementary perspectives on treatment experiences and suggest the likelihood of more positive experiences if receiving early, specialist intervention. Our findings do echo other similar studies and, rather than the experiences of a dissatisfied minority, they replicate and add to the existing evidence of shortcomings and needed changes in care provision for young people with eating disorders.
There was a strong consensus that treatment should not just focus on weight but also address psychological and relational aspects from an early stage. An individualised treatment approach that addresses physical and psychological recovery in parallel, from an individual’s first contact with health services throughout their therapeutic journey, is more likely to lead to full recovery and minimise the risk of relapse.
Carefully planned peer support for young people, as well as support for parents and siblings would be highly beneficial. Although such changes in care provision may be challenging for many overstretched services, they seem essential in the long term by preventing delayed intervention and longer illness duration, both well recognised predictors of poor clinical outcome.39
The role of professionals’ knowledge of eating disorders and treatment pathways was perceived as crucial at all levels of care, from primary to ‘truly specialist’. Specialty training, such as general practice and core psychiatry training should provide more opportunities to enhance eating disorder knowledge and understanding of patient and family experience of eating disorders among junior doctors. This should particularly target misconceptions around weight loss as a sole or primary factor in the referral and treatment process.
Improving professionals’ knowledge at all levels is clearly key to achieving early diagnosis and intervention,40 but equally important is to ensure that treatments have a better balance between the necessary focus on restoring nutrition and physical health and psychological well-being.
In England, this has been extensively highlighted in the literature and recently brought forward by the new commissioning guidance for children and young people with eating disorders8 and advocacy efforts to increase awareness among GPs of the clinical, particularly psychological, indicators of eating disorders and importance of early referral for specialist assessment.
However, these efforts will only be effective where specialist services exist and have the capacity to respond. Further research is needed to assess the potential positive impact of these initiatives.
The historical nature of retrospective accounts means that some of the issues raised here may have already been addressed in national guidance and service provision. Nonetheless, qualitative data supporting these changes adds impetus to these priorities.
We would like to thank all participating young people and parents, Beat, Adrienne Rennie, Amanda Woodrow, Caroline Kalorkoti (Beat Ambassadors), Leoni Randall, Susan Howson and Barbara Barrett who assisted with data collection and manuscript preparation. Work was carried out at the University of Exeter Medical School.
University at Albany
Tomoko Udo – University at Albany