Editorial Perspective: A perfect storm – how and why eating disorders in young people have thrived in lockdown and what is happening to address it

Abstract

The number of children and young people referred to community eating disorders services escalated dramatically shortly after onset of the Covid‐19 pandemic. Many presented with medical instability following restrictive eating and needed acute hospitalisation to correct malnutrition. In addition to the many risk factors for mental health problems that young people have been subjected to since onset of the pandemic, the question for eating disorders researchers, practitioners and policy makers is how, for so many, did it become about eating. In this editorial, some of the factors that may explain how eating, weight, shape and body image may have taken centre stage in young people's lives are explored. Finally, some clinical service adaptations and gaps, policy considerations, and research priorities are outlined.

Services for children and young people (CYP) with eating disorders in England have recently undergone transformation, following investment of £30M per year into CYP community eating disorders services (CEDS) and delivery of a specialist whole team training for CYP CEDS across England, accompanying the Forward Year Forward View for Mental Health (The NHS England Mental Health Taskforce, ²⁰¹⁶). As a result, detailed data are reported quarterly through the NHS Digital Strategic Data Collection System (SDC; NHS Digital, ²⁰²²) for the 70 or so CYP CEDS in England. These data show that referrals for eating disorders among CYP increased year on year, from 1,757 referrals over 3 months in 2016 (292 urgent, 1,465 routine) to 2,764 referrals in the 3 months before the onset of the Covid‐19 pandemic in the Spring of 2020 (371 urgent, 2,393 routine). Almost 2 years into the pandemic that number had reached 5,491, urgent referrals having almost trebled (1,059) and routine referrals increased by 85% (4,432).

Services that responded to demand at first began to buckle under the strain and waiting times, which had been nearing the government target of 95% of referrals being seen within access and waiting time standards (1 week for urgent cases, four for routine), started to rise, albeit with some regional variation. Staff turnover has been high, reflecting the challenge of continuing to meet this unprecedented demand. The latest figures show that only 59% of urgent referrals are being seen within the target wait times, along with early signs that referral numbers may be beginning to fall.

A detailed narrative is needed to understand what was happening. In March 2020, as lockdown started, referrals fell by around 25%, as access to care was impacted and everyone fled from the, as yet poorly understood, risk. This was followed by a sharp increase in referrals from the summer of 2020 as lockdown lifted and schools returned. Whether delayed recognition, for example by schools, of cases emerging during the lockdown period, or whether increased anxiety catalysed deterioration as CYP began to socialise again were the main contributors for this late surge in referrals is not yet known. Over the course of the autumn increased presentations to emergency departments and acute admissions to paediatric wards led paediatricians to issue warnings to parents to be alert to eating disorders over the December 2020 holiday period.

Comparing data from several CYP CEDS, new patients did not differ in age or gender from pre‐pandemic cases (unpublished data); the main diagnoses remained restrictive eating disorders, namely anorexia nervosa (AN) including the DSM5 term ‘atypical anorexia nervosa’ (AAN), and avoidant restrictive intake disorder (ARFID). ARFID is an umbrella term describing restriction in dietary intake for a variety of reasons that is not driven by weight and shape concerns. Possible increases in the incidence of ARFID are not clearly documented, since ARFID falls outside the scope of many eating disorders services, depending on the presentation.

To better characterise the clinical need and generate hypotheses about possible mechanisms, systematic study of routinely collected data from CYP CEDS and of paediatric admissions for mental disorders before and during the pandemic are needed. Restrictive eating disorders occur across the weight range, and early data suggest that more of the young people presenting were in higher weight categories than before. AAN describes a clinical presentation where all the criteria for AN are met except, despite significant weight loss, the individual's weight is within or above the normal range. In ICD11, young people with this presentation would be diagnosed with AN; rapid weight loss (e.g. more than 20% of total body weight within 6 months) may replace the low body weight guideline as long as other diagnostic requirements are met. CYP were presenting with severe medical instability (bradycardia, postural hypotension, hypothermia) as a result of extreme dietary restriction, with negligible intake (e.g. setting calorie targets not compatible with health) or fasting for prolonged periods. Despite the medical risks associated with these weight loss methods (Whitelaw, Lee, Gilbertson, & Sawyer, ²⁰¹⁸), they were still determined to carry on losing weight. Some of these CYP required interventions such as nasogastric feeding in order to stabilise their malnutrition.

To date there have been few studies on treatment, course and outcome of AAN in CYP to guide clinical decision‐making. Was it necessary and justifiable, particularly in light of Covid‐related pressures and risks in acute services, to use the same thresholds for admission for medical stabilisation for people at healthy or higher weights as for those at low weight? Are the risk of refeeding in this population the same as for those at low weight? Are other aspects of care applicable? Crucially, if a young person is still, by medical definitions, overweight, should eating disorders services support continued weight loss? And, if this is outside the remit of eating disorders services, is eating disorders sensitive weight loss support available? Managing eating disorders in the context of higher weight is an underdeveloped area of knowledge, but one for which there is increasing need for answers (Jebeile, Lister, Baur, Garnett, & Paxton, ²⁰²¹).

Children and young people CEDS adapted to rises in demand for care by screening and triaging referrals, with only the highest risk patients prioritised for full assessment and treatment. This had the effect of a return to the perception that patients must be seriously unwell or underweight to receive care – a perception the transformation had been determinedly trying to overturn. Once in care, most psychological interventions were delivered online at first, raising questions about the effectiveness of online compared to in person interventions, and about whether these introduced inequalities of access based on technology availability. In practice, for the majority of CYP this transition worked well, and hybrid adaptations look set to continue across mental health treatment delivery. Some patients even preferred online or telephone appointments, whilst for others it meant an end to opportunities for privacy, and sometimes involvement of the whole family in treatment was a challenge. For the highest risk patients, the lack of physical health review and in person weighing was a concern. Separate physical health monitoring clinics were established in some areas to complement online therapy. To cope with demand, some services offered brief targeted psychological interventions, such as a six session parent group early intervention (Rosello et al., ²⁰²¹) or CBT‐T (Waller et al., ²⁰¹⁸), as a first line where appropriate, or, if severity thresholds were not reached, signposted to third sector support services. Gaps in provision between outpatient and inpatient care became even more evident, as even day care services for CYP moved online. Pressure increased on paediatric services to admit CYP in mental health crisis presenting to emergency departments (Hudson et al., ²⁰²²).

Referrals are complicated metrics, reflecting a range of factors from help seeking to health service organisation, and cannot be equated to underlying incidence or prevalence. Many epidemiological studies omit eating disorders, and CYP mental health studies during Covid‐19 have been no different. Our systematic review of the impact of school closures on mental and physical health, found no studies to include that looked at eating disorders (Viner et al., ²⁰²²). Looking to population studies to understand why the pandemic has been so powerful for the increasing presentations in eating disorders seen across many countries provides little in the way of answers as yet (Devoe et al., ²⁰²²). Some studies have examined change in CYP eating behaviours. For example, in a French study, parents reported changes in their children's (age 3–12) eating behaviour and also in their own parenting, describing themselves as more permissive, having fewer rules about eating, soothing more with food, giving more child autonomy, buying more pleasurable and sustainable foods, and preparing more home‐cooked meals (Philippe, Chabanet, Issanchou, & Monnery‐Patris, ²⁰²¹). A Polish study of adolescents found that health and weight control became more important determinants of food choice during the pandemic than mood or sensory appeal (Guzek, Skolmowska, & Glabska, ²⁰²⁰). And many studies reported a reduction in physical activity levels and increases in consumption of unhealthy foods in CYP. The YouCope study of young people (age 16–24) found that 55.3% reported overeating in response to their mood during lockdown, 54.9% reported eating less to control their weight and 64.2% reported weight concerns.¹ The pandemic appeared to have focussed minds on food, body weight and shape.

Reports of the association between severity of outcome from Covid‐19 infection and metabolic risk associated with higher weight appeared early in the pandemic. The emotional impact of the pandemic on young people's mental health now had an added element – fear of obesity. Initial anxieties about access to certain foods and consequent hoarding set the scene for food, weight, exercise and eating behaviour to take centre stage in family lives. Television programmes promoting rapid weight loss and exercise programmes advocating calorie counting began to emerge. One manifestation was an unprecedented turn towards plant‐based diets, fuelled by environmental concerns whose timing with the pandemic may or may not have been coincidental. 125,000 UK citizens took the Veganuary pledge in 2021, an increase of 100,000 on 2020. And while there is no direct evidence of causality, the demographic of those most likely to become vegan is not dissimilar to those prone to developing eating disorders. One study found the prevalence of vegetarianism among people with ED was 35% compared with 7% in healthy controls (Zuromski et al., ²⁰¹⁵).

And then there is the role of social media to consider, which had become a lifeline for CYP, but which perpetuates appearance‐related anxieties and feeds on perfectionism as well as being a potential vehicle for social exclusion and cyberbullying, all of which are known to impact mental health. The pandemic brought forward a new generation of ‘inspiring’ stories promoting extreme nutritional choices, eating rules and compulsive exercise. Online material such as ‘Thinspiration’, ‘Fitspiration’ and ‘Proana’ websites are well recognised risks (Saul, Rodgers, & Saul, ²⁰²²). Young people had to navigate this territory without the real‐life interactions with peers and adults who usually provide checks, balances and validation.

Numerous systematic reviews have highlighted widespread negative impacts that the COVID‐19 pandemic and associated restrictions have had on body image and disordered eating outcomes (Devoe et al., ²⁰²²; Monteleone, Cascino, Barone, Carfagno, & Monteleone, ²⁰²¹; Schneider et al., ²⁰²²). It would be over simplistic to attribute causality of the rise in eating disorders to the phenomena outlined above alone; clearly genetic vulnerability and other biopsychosocial factors play a part in determining response to these environmental triggers. For example, almost all of the ‘Active Ingredients’ proposed as important mechanisms to target in the prevention and treatment of anxiety and depression (Wolpert, Pote, & Sebastian, ²⁰²¹) are also applicable to eating disorders, yet it is in the ingredients that are specific to the development of eating disorders that clues can be found about both risk and resilience to the environmental triggers that the pandemic has produced. It is well established that the main risk factors for eating disorders, apart from being female, are body image dissatisfaction, weight stigma, dieting behaviour alongside negative affect and interpersonal difficulties. The pandemic has added to calls for a joined up public health approaches to eating disorders and obesity prevention and treatment, focussing on body image, emotional eating, health behaviours and tackling weight stigma. To complement this public health approach, on‐going collection of high‐quality epidemiological data are needed on the incidence and prevalence of eating disorders so that temporal trends and the impact of interventions such as the impact of calorie labelling on both obesity rates and eating disorder development can be tracked. We know that, for most young people at higher weight, unsupervised dieting to manage weight may exacerbate eating disorder risk, while structured and supervised weight management is likely to reduce eating disorder risk (Jebeile et al., ²⁰¹⁹). The EDIT collaboration,² an international research initiative aimed at identifying how individual characteristics and components of weight management interventions may contribute to eating disorder risk in higher weight individuals participating in weight loss treatment trials, may provide some useful information to guide personalised intervention and collaborative care across eating disorders and weight management services.

Finally, too many CYP with eating disorders are still not receiving adequate care quickly enough. We need comprehensively evaluated new models of care for CYP with eating disorders presenting in acute paediatric settings, such as the Best for You service model,³ that provide intensive community support and day care, to ensure crisis presentations are minimised, hospitalisations are as brief as possible and that CYP and families are supported towards recovery in their own homes, schools and communities.