Research suggests that those caring for a loved one with an eating disorder in the UK report unmet needs and highlight areas for improvement. More research is needed to understand these experiences on a wider, national scale.

To disseminate a national survey for adults who had experience caring for a loved one with an eating disorder in the UK, informed by the findings of a smaller scale, qualitative study with parents, siblings and partners in the UK.

A cross-sectional web-based survey was disseminated to adults who had experience caring for a loved one with an eating disorder in the UK.

A total of 360 participants completed the survey. Participants described experiences of care received in both children and young people's, and adult services. Those receiving care from children and young people's services generally reported more timely care, greater involvement in care and more confidence managing their loved one's symptoms post-discharge. In both settings, participants identified a number of areas for improvement, including more timely access to care, improved transition processes and discharge planning, and increased involvement in their loved one's care.

This survey captures the experiences of individuals caring for a loved one with an eating disorder in the UK. There are identified discrepancies between experiences of care in children and young people services compared with adult services. Clinical implications and recommendations for improvement are discussed, including improved transition and discharge processes, increased involvement of and/or support for carers themselves, and more timely access to support services for the unwell individual.

Anorexia nervosa (AN) is a serious mental illness. One-third of people develop severe, enduring, illness, adversely impacting quality of life with high health system costs. This study assessed the economic case for enhanced care for adults newly diagnosed with AN.

A five-state 312-month-cycle Markov model assessed the economic impact of four enhanced care pathways for adults newly diagnosed with AN in England, Germany, and Spain. Enhancements were halving wait times for any outpatient care, receiving specialist outpatient treatment post-referral, additional transitional support post-referral, and all enhancements combined. Care pathways, estimates of impact, resource use, and costs were drawn from literature. Net monetary benefits (NMBs), impacts on health system costs, and disability-adjusted life years (DALYs) averted were estimated. Parameter uncertainty was addressed in multi-way sensitivity analyses. Costs are presented in 2020 purchasing power parity adjusted Euros.

All four enhanced care pathways were superior to usual care, with the combined intervention scenario having the greatest NMBs of €248,575, €259,909, and €258,167 per adult in England, Germany, and Spain, respectively. This represented maximum NMB gains of 9.38% (€21,316), 4.3% (€10,722), and 4.66% (€11,491) in England, Germany and Spain compared to current care. Healthcare costs would reduce by more than 50%.

Early and effective treatment can change the trajectory of AN. Reducing the untreated duration of the disorder is crucial. There is a good economic case in different country contexts for measures to reduce waiting times between diagnosis and treatment and increase access to enhanced outpatient treatment.

Adults with anorexia nervosa experience high levels of relapse following in-patient treatment. ECHOMANTRA is a novel online aftercare intervention for patients and carers, which provides psychoeducation and support to augment usual care.

To explore patient and carer experiences of receiving the ECHOMANTRA intervention.

This is part of the process evaluation of the ECHOMANTRA intervention as delivered in the TRIANGLE trial (ISRCTN: 14644379). Semi-structured interviews were conducted with 20 participants randomised to the ECHOMANTRA (ten patients and ten carers). Thematic analysis was used to analyse the interview transcripts.

Five major themes were identified: (1) Mixed experience of the intervention; (2) tailoring the intervention to the stage of recovery; (3) involvement of carers; (4) acceptability of remote support; and (5) impact of self-monitoring and accountability.

Participants were mostly positive about the support offered. The challenges of using remote and group support were counterbalanced with ease of access to information when needed. Components of the ECHOMANTRA intervention have the potential to improve care for people with eating disorders.

In response to recommendations for improving the quality and coordination of care delivered by eating disorder services, a whole-team training programme was commissioned by Health Education England in 2020. This paper describes the development and evaluation of the Eating Disorder Services for Adults (EDSA) whole-team training course, delivered to National Health Service adult eating disorder community teams in England. Course participants (n = 561) in the first two EDSA training cohorts (2021 and 2022) were asked to complete questionnaires at intake and after each session, asking about their views on the training.

All course aspects were rated as highly enjoyable, meeting participants’ training needs and fostering reflective practice. Thematic analysis identified themes relating to key innovative features of the course and suggestions for improvements.

Preliminary evaluation suggests that EDSA is valued by clinicians to enhance their knowledge, skills and ability to improve eating disorder patient care.

Physical sequelae of anorexia nervosa (AN) include a marked reduction in whole brain volume and subcortical structures such as the hippocampus. Previous research has indicated aberrant levels of inflammatory markers and growth factors in AN, which in other populations have been shown to influence hippocampal integrity.

Here we investigated the influence of concentrations of two pro-inflammatory cytokines (tumor necrosis factor-alpha [TNF-α] and interleukin-6 [IL-6]) and brain-derived neurotrophic factor (BDNF) on the whole hippocampal volume, as well as the volumes of three regions (the hippocampal body, head, and tail) and 18 subfields bilaterally. Investigations occurred both cross-sectionally between acutely underweight adolescent/young adult females with AN (acAN; n = 82) and people recovered from AN (recAN; n = 20), each independently pairwise age-matched with healthy controls (HC), and longitudinally in acAN after partial renourishment (n = 58). Hippocampal subfield volumes were quantified using FreeSurfer. Concentrations of molecular factors were analyzed in linear models with hippocampal (subfield) volumes as the dependent variable.

Cross-sectionally, there was no evidence for an association between IL-6, TNF-α, or BDNF and between-group differences in hippocampal subfield volumes. Longitudinally, increasing concentrations of BDNF were positively associated with longitudinal increases in bilateral global hippocampal volumes after controlling for age, age2, estimated total intracranial volume, and increases in body mass index (BMI).

These findings suggest that increases in BDNF may contribute to global hippocampal recovery over and above increases in BMI during renourishment. Investigations into treatments targeted toward increasing BDNF in AN may be warranted.

The aim of this study was to assess barriers and facilitators in the pathways toward specialist care for eating disorders (EDs).

Eleven ED services located in seven European countries recruited patients with an ED. Clinicians administered an adapted version of the World Health Organization “Encounter Form,” a standardized tool to assess the pathways to care. The unadjusted overall time needed to access the ED unit was described using the Kaplan–Meier curve.

Four-hundred-nine patients were recruited. The median time between the onset of the current ED episode and the access to a specialized ED care was 2 years. Most of the participants did not directly access the specialist ED unit: primary “points of access” to care were mental health professionals and general practitioners. The involvement of different health professionals in the pathway, seeking help for general psychiatric symptoms, and lack of support from family members were associated with delayed access to ED units.

Educational programs aiming to promote early diagnosis and treatment for EDs should pay particular attention to general practitioners, in addition to mental health professionals, and family members to increase awareness of these illnesses and of their treatment initiation process.

Relapse rates for individuals with anorexia nervosa after intensive hospital treatment (in-patient or full-time day care) are high. Better knowledge about the difficulties and opportunities that arise during this transition is needed to identify factors that support or hinder continued recovery upon discharge.

The aim of this study was to explore the experiences of adult patients and their chosen carers on the process of transitioning from intensive eating disorder treatment settings to the community.

Semi-structured interviews were conducted with patients with anorexia nervosa (n = 11) discharged from day or in-patient care from specialised eating disorder units across the UK, and their chosen carers (n = 20). Data were analysed with inductive thematic analysis.

Four interrelated themes were identified for both groups. For patients, themes were continuity of care, ambivalence about continued recovery, the value of social support and a call for enhanced transition support. For carers, themes were the impact of the eating disorder on themselves and the family, perceptions of recovery and support post-discharge, the impact of previous treatment and care experiences, and desire to create a supportive transition process.

The study provides an insight into the unique challenges that individuals with anorexia nervosa face upon leaving intensive treatment. A lack of post-discharge planning, support system and identity formation outside of anorexia nervosa were perceived as barriers to continued recovery. Patients and carers advocated for transition support that incorporates a phased, inclusive approach with accessible professional and social support in the community.

Caring for a loved one with an eating disorder typically comes with a multitude of challenges, yet siblings and partners are often overlooked. It is important to understand if current clinical guidance for supporting carers are effective and being utilised for these groups, to help meet their needs.

To identify the experiential perspectives of siblings and partners of a loved one with an eating disorder compared with guidance for improving the adequacy of support provided to carers published by Beat and Academy for Eating Disorders.

Three online focus groups were held for ten siblings and five partners from across the UK (12 females and three males). Carers had experience of caring for a loved one with anorexia nervosa (13 carers) or bulimia nervosa (two carers), across a range of therapeutic settings. Focus group transcriptions were analysed with thematic analysis.

Four key themes were identified: (a) role-specific needs, (b) challenges encountered by siblings and partners, (c) generic needs and helpful strategies or approaches, and (d) accounts of service provision and family support.

Overall, the majority of experiences reported by siblings and partners did not meet the published guidance. Consequently, clinical practice recommendations were identified for services, alongside the charity sector, to take a proactive approach in detecting difficulties, providing skills training and emotional/practical support, adapting/tailoring peer support groups and supporting online facilitation. Our findings part-informed the design of our national online survey on loved ones’ experiences of care in eating disorders.

Parents of a loved one with an eating disorder report high levels of unmet needs. Research is needed to understand whether clinical guidance designed to improve the experience of parents has been effective.

To establish parents’ experiential perspectives of eating disorder care in the UK, compared with guidance published by Beat, a UK eating disorders charity, and Academy for Eating Disorders, the leading international eating disorders professional association.

A total of six focus groups (one online and five face-to-face) were held throughout the UK. A total of 32 parents attended. All participants were parents of a loved one with a diagnosis of anorexia nervosa or atypical anorexia nervosa (mean age 22 years; mean duration of illness 4.4 years). Focus groups were transcribed, and the text was analysed with an inductive approach, to identify emerging themes.

Four key themes were identified: (a) impact of eating disorder on one's life, (b) current service provisions, (c) navigating the transition process and (d) suggestions for improvement.

Current experiences of parents in the UK do not align with the guidelines published by Beat and Academy of Eating Disorders. Parents identified a number of changes that healthcare providers could make, including improved information and support for parents, enhanced training of professionals, consistent care across all UK service providers, policy changes and greater involvement of families in their loved one's care. Findings from this project informed the design of a national web-survey on loved ones’ experience of care in eating disorders.

This trial examined the feasibility, acceptability, and effect sizes of clinical outcomes of an intervention that combines inhibitory control training (ICT) and implementation intentions (if-then planning) to target binge eating and eating disorder psychopathology.

Seventy-eight adult participants with bulimia nervosa or binge eating disorder were randomly allocated to receive food-specific, or general, ICT and if-then planning for 4 weeks.

Recruitment and retention rates at 4 weeks (97.5% and 79.5%, respectively) met the pre-set cut-offs. The pre-set adherence to the intervention was met for the ICT sessions (84.6%), but not for if-then planning (53.4%). Binge eating frequency and eating disorder psychopathology decreased in both intervention groups at post-intervention (4 weeks) and follow-up (8 weeks), with moderate to large effect sizes. There was a tendency for greater reductions in binge eating frequency and eating disorders psychopathology (i.e. larger effect sizes) in the food-specific intervention group. Across both groups, ICT and if-then planning were associated with small-to-moderate reductions in high energy-dense food valuation (post-intervention), food approach (post-intervention and follow-up), anxiety (follow-up), and depression (follow-up). Participants indicated that both interventions were acceptable.

The study findings reveal that combined ICT and if-then planning is associated with reductions in binge eating frequency and eating disorder psychopathology and that the feasibility of ICT is promising, while improvements to if-then planning condition may be needed.

Despite their use in clinical practice, there is little evidence to support the use of therapist written goodbye letters as therapeutic tools. However, preliminary evidence suggests that goodbye letters may have benefits in the treatment of anorexia nervosa (AN).

This study aimed to examine whether therapist written goodbye letters were associated with improvements in body mass index (BMI) and eating disorder symptomology in patients with AN after treatment.

Participants were adults with AN (n = 41) who received The Maudsley Model of Anorexia Treatment for Adults (MANTRA) in a clinical trial evaluating two AN out-patient treatments. As part of MANTRA, therapists wrote goodbye letters to patients. A rating scheme was developed to rate letters for structure and quality. Linear regression analyses were used to examine associations between goodbye letter scores and outcomes after treatment.

Higher quality letters and letters that adopted a more affirming stance were associated with greater improvements in BMI at 12 months. Neither the overall quality nor the style of goodbye letters were associated with improvements in BMI at 24 months or reductions in eating disorder symptomology at either 12 or 24 months.

The results highlight the potential importance of paying attention to the overall quality of therapist written goodbye letters in the treatment of AN, and adopting an affirming stance.

Outpatient interventions for adult anorexia nervosa typically have a modest impact on weight and eating disorder symptomatology. This study examined whether adding a brief online intervention focused on enhancing motivation to change and the development of a recovery identity (RecoveryMANTRA) would improve outcomes in adults with anorexia nervosa.

Participants with anorexia nervosa (n = 187) were recruited from 22 eating disorder outpatient services throughout the UK. They were randomised to receiving RecoveryMANTRA in addition to treatment as usual (TAU) (n = 99; experimental group) or TAU only (n = 88; control group). Outcomes were measured at end-of-intervention (6 weeks), 6 and 12 months.

Adherence rates to RecoveryMANTRA were 83% for the online guidance sessions and 77% for the use of self-help materials (workbook and/or short video clips). Group differences in body mass index at 6 weeks (primary outcome) were not significant. Group differences in eating disorder symptoms, psychological wellbeing and work and social adjustment (at 6 weeks and at follow-up) were not significant, except for a trend-level greater reduction in anxiety at 6 weeks in the RecoveryMANTRA group (p = 0.06). However, the RecoveryMANTRA group had significantly higher levels of confidence in own ability to change (p = 0.02) and alliance with the therapist at the outpatient service (p = 0.005) compared to the control group at 6 weeks.

Augmenting outpatient treatment for adult anorexia nervosa with a focus on recovery and motivation produced short-term reductions in anxiety and increased confidence to change and therapeutic alliance.