International consensus on patient-centred outcomes in eating disorders.

The effectiveness of mental health care can be improved through coordinated and wide-scale outcome measurement. The International Consortium for Health Outcomes Measurement has produced collaborative sets of outcome measures for various mental health conditions, but no universal guideline exists for eating disorders. This Position Paper presents a set of outcomes and measures for eating disorders as determined by 24 international experts from professional and lived experience backgrounds. An adapted Delphi technique was used, and results were assessed through an open review survey. Final recommendations suggest outcomes should be tracked across four domains: eating disorder behaviours and cognitions, physical health, co-occurring mental health conditions, and quality of life and social functioning. Outcomes are collected using three to five patient-reported measures. For children aged between 6 years and 12 years, the measures include the Children's Eating Attitude Test (or, for those with avoidant restrictive food intake disorder, the Eating Disorder in Youth Questionnaire), the KIDSCREEN-10, and the Revised Children's Anxiety and Depression Screener-25. For adolescents aged between 13 years and 17 years, the measures include the Eating Disorder Examination Questionnaire (EDE-Q; or, for avoidant restrictive food intake disorder, the Nine-Item Avoidant Restrictive Food Intake Disorder Screener [NIAS]), the two-item Patient Health Questionnaire (PHQ-2), the nine-item Patient Health Questionnaire (PHQ-9), the two-item Generalised Anxiety Disorder (GAD-2), the seven-item Generalised Anxiety Disorder (GAD-7), and the KIDSCREEN-10. For adults older than 18 years, measures include the EDE-Q (or, for avoidant restrictive food intake disorder, the NIAS), the PHQ-2, the PHQ-9, the GAD-2, the GAD-7, the Clinical Impairment Assessment, and the 12-item WHO Disability Assessment Schedule 2.0. These questionnaires should be supplemented by information on patient characteristics and circumstances (ie, demographic, historical, and clinical factors). International adoption of these guidelines will allow comparison of research and clinical interventions to determine which settings and interventions work best, and for whom.

'My dad was like "it's your brain, what are you doing?"': Participant experiences of repetitive transcranial magnetic stimulation treatment in severe enduring anorexia nervosa.

OBJECTIVE: Repetitive transcranial magnetic stimulation (rTMS) is a promising emerging treatment for anorexia nervosa (AN). However, to date, patients' views and experiences of this treatment have not been fully explored. To assess these, we integrated a qualitative study into a feasibility randomised controlled trial of rTMS in individuals with severe enduring AN. METHOD: Twenty-nine (of 34) trial participants contributed to this study. Semi-structured interviews were conducted 3-months following the completion of rTMS treatment (4-months post-randomisation), prior to unblinding. Transcripts were analysed using content analysis. RESULTS: rTMS was deemed an acceptable but time-consuming treatment. Many emphasised how their lives had changed to some extent during, but mainly after treatment by making them more positive, open-minded, flexible and willing to try new things in relation to their AN and other aspects of their lives. CONCLUSIONS: These qualitative data will be valuable in shaping participant information, recruitment and planning of future large-scale trials of rTMS in AN. TRIAL REGISTRATION: ISRCTN14329415, registered 23rd July 2015, https://www.isrctn.com/ISRCTN14329415.

The First Episode Rapid Early Intervention for Eating Disorders - Upscaled study: Clinical outcomes.

BACKGROUND: First Episode Rapid Early Intervention for Eating Disorders (FREED) is a service model and care pathway for emerging adults aged 16 to 25-years with a recent onset eating disorder (ED) of <3 years. A previous single-site study suggests that FREED significantly improves clinical outcomes compared to treatment-as-usual (TAU). The present study (FREED-Up) assessed the scalability of FREED. A multi-centre quasi-experimental pre-post design was used, comparing patient outcomes before and after implementation of FREED in participating services. METHODS: FREED patients (n = 278) were consecutive, prospectively ascertained referrals to four specialist ED services in England, assessed at four time points over 12 months on ED symptoms, mood, service utilization and cost. FREED patients were compared to a TAU cohort (n = 224) of similar patients, identified retrospectively from electronic patient records in participating services. All were emerging adults aged 16-25 experiencing a first episode ED of <3 years duration. RESULTS: Overall, FREED patients made significant and rapid clinical improvements over time. 53.2% of FREED patients with anorexia nervosa reached a healthy weight at the 12-month timepoint, compared to only 17.9% of TAU patients (X2 [1, N = 107] = 10.46, p < .001). Significantly fewer FREED patients required intensive (i.e., in-patient or day-patient) treatment (6.6%) compared to TAU patients (12.4%) across the follow-up period (X2 [1, N = 40] = 4.36, p = .037). This contributed to a trend in cost savings in FREED compared to TAU (-£4472, p = .06, CI -£9168, £233). DISCUSSION: FREED is robust and scalable and is associated with substantial improvements in clinical outcomes, reduction in inpatient or day-patient admissions, and cost-savings.

Identity Development and Social-Emotional Disorders During Adolescence and Emerging Adulthood: A Systematic Review and Meta-Analysis.

Depression, anxiety and eating disorders ("social-emotional disorders") are common during adolescence/emerging adulthood, periods of intense identity development. Despite this, there are few reviews of existing research on the relationship between symptoms of these disorders and ongoing identity development. This study systematically reviewed, narratively synthesized and meta-analyzed longitudinal investigations of the relationship between identity synthesis/confusion and depression, anxiety and eating disorders symptoms during adolescence/emerging adulthood. Three databases (PsycInfo, Medline, Embase) were searched. Study quality was systematically appraised, findings were qualitatively synthesized and (where possible) meta-analyzed. 20 studies (55% "fair" quality, 45% "poor" quality) were identified, including 13,787 participants (54.2% female, mean age = 14.48 years, range 10-29 years). The narrative synthesis found evidence of bidirectional relationships between identity synthesis/confusion and depression, anxiety and eating disorder symptoms. Meta-analyses and meta-regressions of a sub-sample of studies (N = 9) indicated no significant associations between identity synthesis or confusion and anxiety or depression symptoms. More high-quality research is needed before firm conclusions can be drawn.

Different pathways, same goals: A large-scale qualitative study of autistic and non-autistic patient-generated definitions of recovery from an eating disorder.

BACKGROUND: Definitions of recovery from an eating disorder (ED) have generally been formulated around clinical conceptualisations, rather than based on the views of patients. This paper therefore asked those with lived experience of ED for their own definitions of recovery. METHOD: Data were collected as part of an online study looking at EDs, autism and relationships. About 173 participants identified as recovered from ED and gave free-response definitions of recovery. Responses were subject to thematic analysis. RESULTS: Seven major themes were identified: Weight restoration, lack of ED behaviours, thoughts and behaviours, cognitions, emotional responses, getting on with life, and ongoing challenges. CONCLUSIONS: Many definitions of recovery given by those who have lived experience of ED echoed those used by clinicians and researchers. There were also points of divergence around the ongoing challenges of recovery. Our findings highlight the need for continuing support post-weight restoration to facilitate the successful long-term recovery for those with ED.

Assessing implementation fidelity in the First Episode Rapid Early Intervention for Eating Disorders service model.

BACKGROUND: The First Episode Rapid Early Intervention for Eating Disorders (FREED) service model is associated with significant reductions in wait times and improved clinical outcomes for emerging adults with recent-onset eating disorders. An understanding of how FREED is implemented is a necessary precondition to enable an attribution of these findings to key components of the model, namely the wait-time targets and care package. AIMS: This study evaluated fidelity to the FREED service model during the multicentre FREED-Up study. METHOD: Participants were 259 emerging adults (aged 16-25 years) with an eating disorder of <3 years duration, offered treatment through the FREED care pathway. Patient journey records documented patient care from screening to end of treatment. Adherence to wait-time targets (engagement call within 48 h, assessment within 2 weeks, treatment within 4 weeks) and care package, and differences in adherence across diagnosis and treatment group were examined. RESULTS: There were significant increases (16-40%) in adherence to the wait-time targets following the introduction of FREED, irrespective of diagnosis. Receiving FREED under optimal conditions also increased adherence to the targets. Care package use differed by component and diagnosis. The most used care package activities were psychoeducation and dietary change. Attention to transitions was less well used. CONCLUSIONS: This study provides an indication of adherence levels to key components of the FREED model. These adherence rates can tentatively be considered as clinically meaningful thresholds. Results highlight aspects of the model and its implementation that warrant future examination.

Exploring the use of individualised patient-reported outcome measures in eating disorders: Validation of the Psychological Outcome Profiles.

RATIONALE: Psychotherapies for eating disorders (EDs) are routinely assessed using standardised patient-reported outcome measures (PROMs). PROMs have been criticised for their lack of patient centeredness and clinical utility. The Psychological Outcome Profiles (PSYCHLOPS) is an individualised PROM that allows patients to specify their own outcomes. AIMS: (1) To validate the use of the PSYCHLOPS in ED treatment, and (2) to identify patient concerns beyond those measured by common ED PROMs. METHODS: Two hundred and seventy-eight emerging adult patients, presenting with a first-episode ED (aged 16-25, illness duration <3 years) completed the PSYCHLOPS and two standardised ED PROMs (the EatingDisorder Examination Questionnaire [EDE-Q] and the Clinical Impairment Assessment Questionnaire [CIA]) at four time points across 12 months. Psychometrics of the PSYCHLOPS were assessed quantitatively against the EDE-Q and CIA. Content analysis assessed unique patient concerns identified by PSYCHLOPS. RESULTS: The PSYCHLOPS had adequate to good psychometric properties. A total of 53.3% of participants reported a concern not addressed by the EDE-Q or the CIA, the most common being depression/anxiety, academic problems, treatment concerns and disturbed sleep. DISCUSSION: PROMs can be complemented by the PSYCHLOPS to identify problems specific to an individual's context. As ED patients are typically ambivalent about change, understanding their concerns is vital in building motivation for change.

"I'm truly free from my eating disorder": Emerging adults' experiences of FREED, an early intervention service model and care pathway for eating disorders.

BACKGROUND: Eating disorders (EDs) typically start during adolescence or emerging adulthood, periods of intense biopsychosocial development. FREED (First Episode Rapid Early Intervention for EDs) is a service model and care pathway providing rapid access to developmentally-informed care for emerging adults with EDs. FREED is associated with reduced duration of untreated eating disorder and improved clinical outcomes, but patients' experiences of treatment have yet to be assessed. OBJECTIVE: This study aimed to assess emerging adults' experiences of receiving treatment through FREED. METHOD: This study triangulated qualitative data on participants' experiences of FREED treatment from questionnaires and semi-structured interviews. Participants were 106 emerging adults (aged 16-25; illness duration < 3 yrs) (questionnaire only = 92; interview only = 6; both = 8). Data were analysed thematically. RESULTS: Most participants reported psychological and behavioural changes over the course of treatment (e.g. reduction in symptoms; increased acceptance and understanding of difficulties). Participants identified five beneficial characteristics of FREED treatment: i) rapid access to treatment; ii) knowledgeable and concerned clinicians; iii) focusing on life beyond the eating disorder; iv) building a support network; v) becoming your own therapist. CONCLUSION: This study provides further supports for the implementation of early intervention and developmentally-informed care for EDs. Future service model development should include efforts to increase early help-seeking.

Duration of untreated eating disorder and relationship to outcomes: A systematic review of the literature.

OBJECTIVE: This systematic review assesses the average duration of untreated eating disorder (DUED) in help-seeking populations at the time of first eating disorder (ED) treatment and investigates the relationship between DUED and symptom severity/clinical outcomes. METHOD: PRISMA guidelines were followed throughout. Selected studies provided information on either: (i) length of DUED, (ii) components of DUED, (iii) cross-sectional associations between DUED and symptom severity, (iv) associations between DUED and clinical outcomes, or (v) experimental manipulation of DUED. Study quality was assessed. RESULTS: Fourteen studies from seven countries were included. Across studies, average DUED weighted by sample size was 29.9 months for anorexia nervosa, 53.0 months for bulimia nervosa and 67.4 months for binge eating disorder. A younger age at time of first treatment was indicative of shorter DUED. Retrospective studies suggest that a shorter DUED may be related to a greater likelihood of remission. Manipulation of DUED by shortening service-related delays may improve clinical outcomes. CONCLUSIONS: Data on length of DUED provide a benchmark for early intervention in EDs. Preliminary evidence suggests DUED may be a modifiable factor influencing outcomes in EDs. To accurately determine the role of DUED, definition and measurement must be uniformly operationalised. Highlights This systematic review is the first to examine duration of untreated eating disorder (DUED) across different eating disorders. Definitions and measurement of DUED and its components vary considerably between studies. Across different eating disorders average DUED weighted by sample size ranges from approximately two and a half years (for anorexia nervosa) to nearly 6 years (for binge eating disorder). DUED appears to be related to age such that younger patients have shorter DUED.

Assessing the impact of First Episode Rapid Early Intervention for Eating Disorders on duration of untreated eating disorder: A multi-centre quasi-experimental study.

BACKGROUND: Duration of untreated eating disorder (DUED), that is, the time between illness onset and start of first evidence-based treatment, is a key outcome for early intervention. Internationally, reported DUED ranges from 2.5 to 6 years for different eating disorders (EDs). To shorten DUED, we developed FREED (First Episode Rapid Early Intervention for EDs), a service model and care pathway for emerging adults with EDs. Here, we assess the impact of FREED on DUED in a multi-centre study using a quasi-experimental design. METHODS: Two hundred and seventy-eight patients aged 16-25, with first episode illness of less than 3 years duration, were recruited from specialist ED services and offered treatment via FREED. These were compared to 224 patients, of similar age and illness duration, seen previously in participating services (treatment as usual [TAU]) on DUED, waiting times and treatment uptake. RESULTS: FREED patients had significantly shorter DUED and waiting times than TAU patients. On average, DUED was reduced by ∼4 months when systemic delays were minimal. Furthermore, 97.8% of FREED patients took up treatment, versus 75.4% of TAU. DISCUSSION: Findings indicate that FREED significantly improves access to treatment for emerging adults with first episode ED. FREED may reduce distress, prevent deterioration and facilitate recovery.

"Now It's Just Old Habits and Misery"-Understanding the Impact of the Covid-19 Pandemic on People With Current or Life-Time Eating Disorders: A Qualitative Study.

Background: Many aspects of the Covid-19 pandemic may make living with or recovery from an eating disorder (ED) particularly challenging. Understanding the processes which underlie the psychological and behavioral responses of people with EDs during this time are key to ensure tailored support in these unprecedented circumstances. Methods: People with lifetime EDs (n = 32) were recruited through social media from May to June 2020 during a period of strict infection control measures in the United Kingdom (i.e., "lockdown," "social distancing"). They completed open-ended questions in an online anonymous questionnaire that invited them to reflect on how various aspects of their lives have been affected by the Covid-19 pandemic, including ED symptoms and coping strategies. Responses were analyzed using thematic analysis. Results: Most respondents reported that their ED worsened or resurfaced. Isolation, low mood, anxiety, lack of structure, disruption to routines, and media/social media messages around weight and exercise seemed to contribute to this. There was a clear sense that individuals struggled with which aspects of psychological distress to prioritize, i.e., mood vs. ED cognitions and behaviors, particularly as attempts to cope with one often exacerbated the other. Nonetheless, some participants reported "silver linings" of the pandemic. Conclusions: In this self-selected sample, deterioration or recurrence of ED symptoms were the norm. This has implications for the provision of treatment and care for people with EDs both in the immediate short-term and in potential future waves of the pandemic, with a significant surge of new and re-referrals expected.

"I'm not a teenager, I'm 22. Why can't I snap out of it?": a qualitative exploration of seeking help for a first-episode eating disorder during emerging adulthood.

BACKGROUND: Eating disorders (EDs) typically have their onset during adolescence or the transition to adulthood. Emerging adulthood (~ 18-25 years) is a developmental phase which conceptually overlaps with adolescence but also has unique characteristics (e.g. increased independence). Emerging adults tend to come to ED services later in illness than adolescents, and emerging adulthood's unique characteristics may contribute to such delays. OBJECTIVE: This study aimed to explore attitudes towards ED symptoms, and their implications for help-seeking, amongst emerging adults receiving ED treatment through FREED, an early intervention care pathway. METHOD: Participants were 14 emerging adults (mean age 20.9 years; SD = 2.0), all currently receiving specialist treatment for a first-episode, recent-onset (< 3 years) ED. Semi-structured interviews relating to experiences of help-seeking were conducted, and data were analysed thematically. RESULTS: Symptom egosyntonicity, gradual reappraisal and feelings of exclusion from ED discourse were key attitudinal phases prior to help-seeking, each of which had distinct implications for help-seeking. CONCLUSIONS: Emerging adults with first-episode EDs show a distinct set of help-seeking-related challenges and opportunities (e.g. help-seeking for others; help-seeking at transitions; self-sufficiency). This research might be used to inform the development and evaluation of interventions which aim to facilitate help-seeking amongst emerging adults with first-episode recent-onset EDs.

First episode rapid early intervention for eating disorders (FREED): From research to routine clinical practice.

AIMS: Eating disorders are serious psychiatric disorders with high rates of morbidity and mortality. Early intervention can improve treatment outcomes and reduce disruption to psychosocial development. However, early intervention is not well established in the eating disorder field. First episode rapid early intervention for eating disorders (FREED) was developed to address barriers to early, effective eating disorder treatment in emerging adults aged 16 to 25 years. Since 2014, FREED has progressed from a single-site research project to an evidence-based care approach in nine eating disorder services. This paper aims to summarize key learning from the scaling of FREED to date, with attention to how this learning may generalizes to other models of care. METHODS: We describe the development, scaling and implementation of FREED with reference to the RE-AIM (reach; effectiveness/efficacy; adoption; implementation; maintenance) framework. We also summarize challenges and learning in each of the RE-AIM domains. RESULTS: FREED has demonstrated real-world validity across diverse clinical contexts, geographical regions and populations. Key outcomes are seen for each of the RE-AIM domains. CONCLUSIONS: FREED provides an example of effective, non-commercial scaling of an early intervention eating disorder care pathway. This work is likely to be particularly relevant to others looking to scale-up early intervention models and for those working in secondary and tertiary mental health settings.

First episode rapid early intervention for eating disorders: A two-year follow-up.

AIM: We describe 2-year outcomes of a novel first episode early intervention service for young adults with a recent onset eating disorder (FREED). Outcomes in FREED patients with anorexia nervosa (AN) were compared with those from patients previously seen in our service [treatment as usual (TAU) cohort], matched for age, illness duration and diagnosis. METHODS: Electronic case records of FREED-AN (n = 22) and TAU-AN patients (n = 35) were examined to identify service utilisation and clinical outcomes over 24 months. RESULTS: Outpatient service utilisation was similar in both groups, but FREED-AN patients needed intensive (in- or day-patient) treatment less frequently than TAU-AN (23% vs 32%). FREED-AN patients had a higher estimated mean body mass index [19.2 kg/m2 ; 95% CI (18.21, 20.16)] than TAU patients [18.0 kg/m2 ; 95% CI (16.90, 19.15)] at last contact. CONCLUSION: Introduction of FREED led to a more complete recovery in patients with AN at 24 months.

Early intervention services for non-psychotic mental health disorders: a scoping review protocol.

INTRODUCTION: Worldwide mental health disorders are associated with a considerable amount of human suffering, disability and mortality. Yet, the provision of rapid evidence-based care to mitigate the human and economic costs of these disorders is limited. The greatest progress in developing and delivering early intervention services has occurred within psychosis. There is now growing support for and calls to extend such approaches to other diagnostic groups. The aim of this scoping review is to systematically map the emerging literature on early intervention services for non-psychotic mental health disorders, with a focus on outlining how services are structured, implemented and scaled. METHODS AND ANALYSIS: The protocol was developed using the guidance for scoping reviews in the Joanna Briggs Institute manual and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for scoping reviews checklist. A systematic search for published and unpublished literature will be conducted using the following databases: (1) MEDLINE, (2) PsycINFO, (3) HMIC, (4) EMBASE and (5) ProQuest. To be included, documents must describe and/or evaluate an early intervention service for adolescents or adults with a non-psychotic mental health disorder. There will be no restrictions on publication type, study design and date. Title and abstract, and full-text screening will be completed by one reviewer, with a proportion of articles screened in duplicate. Data analysis will primarily involve a qualitatively summary of the early intervention literature, the characteristics of early intervention services and key findings relating to their evaluation and implementation. ETHICS AND DISSEMINATION: The synthesis of published and unpublished articles will not require ethical approval. The results of this scoping review will be published in a peer-reviewed journal and disseminated via social media, conference presentations and other knowledge translation activities.