Characterising illness stages and recovery trajectories of eating disorders in young people via remote measurement technology (STORY): a multi-centre prospective cohort study protocol.

BACKGROUND: Eating disorders (EDs) are serious, often chronic, conditions associated with pronounced morbidity, mortality, and dysfunction increasingly affecting young people worldwide. Illness progression, stages and recovery trajectories of EDs are still poorly characterised. The STORY study dynamically and longitudinally assesses young people with different EDs (restricting; bingeing/bulimic presentations) and illness durations (earlier; later stages) compared to healthy controls. Remote measurement technology (RMT) with active and passive sensing is used to advance understanding of the heterogeneity of earlier and more progressed clinical presentations and predictors of recovery or relapse. METHODS: STORY follows 720 young people aged 16-25 with EDs and 120 healthy controls for 12 months. Online self-report questionnaires regularly assess ED symptoms, psychiatric comorbidities, quality of life, and socioeconomic environment. Additional ongoing monitoring using multi-parametric RMT via smartphones and wearable smart rings ('Oura ring') unobtrusively measures individuals' daily behaviour and physiology (e.g., Bluetooth connections, sleep, autonomic arousal). A subgroup of participants completes additional in-person cognitive and neuroimaging assessments at study-baseline and after 12 months. DISCUSSION: By leveraging these large-scale longitudinal data from participants across ED diagnoses and illness durations, the STORY study seeks to elucidate potential biopsychosocial predictors of outcome, their interplay with developmental and socioemotional changes, and barriers and facilitators of recovery. STORY holds the promise of providing actionable findings that can be translated into clinical practice by informing the development of both early intervention and personalised treatment that is tailored to illness stage and individual circumstances, ultimately disrupting the long-term burden of EDs on individuals and their families.

A novel whole-team training programme for adult eating disorder services in England: rationale, development and preliminary evaluation.

AIMS AND METHOD: 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. RESULTS: 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. CLINICAL IMPLICATIONS: Preliminary evaluation suggests that EDSA is valued by clinicians to enhance their knowledge, skills and ability to improve eating disorder patient care.

The impact of continuous calorie restriction and fasting on cognition in adults without eating disorders.

Research into the effects of calorie restriction continues to intrigue those interested in whether it may allow humans to live longer and healthier lives. Animal studies of continuous calorie restriction (CCR) and fasting have demonstrated substantial advantages to health and longevity. However, concerns remain about the impact of restricting calorie intake on human health and cognition. Given the emerging evidence of cognitive impairments in eating disorders, studies investigating restricted calorie intake in healthy humans (in an ethical way) may also have implications for understanding restrictive eating disorders. In this review, the published literature on the impact of CCR and fasting on cognitive function in healthy human participants is synthesized. Of the 33 studies of CCR and fasting in humans identified, 23 demonstrated significant changes in cognition. Despite variation across the cognitive domains, results suggest CCR benefits inhibition, processing speed, and working memory, but may lead to impairments in cognitive flexibility. The results of fasting studies suggest fasting is associated with impairments in cognitive flexibility and psychomotor abilities. Overall, the results of these studies suggest the degree (ie, the severity) of calorie restriction is what most likely predicts cognitive improvements as opposed to impairments. For individuals engaging in sustained restriction, this may have serious, irreversible consequences. However, there are mixed findings regarding the impact of CCR and fasting on this aspect of human functioning, suggesting further research is required to understand the costs and benefits of different types of calorie restriction.

Preliminary Validation of The Eating Disorders Examination Questionnaire-Short Parent Version (EDE-QS-P).

OBJECTIVE: There is a lack of reliable and valid parent-report measures assessing eating disorder (ED) pathology in children and adolescents. This study aimed to develop and provide preliminary validation of a new parent-report measure, the 12-item Eating Disorder Examination Questionnaire-Short Parent Version (EDE-QS-P). METHOD: The EDE-QS-P was completed by 296 parents seeking treatment for their child at an ED clinic. Children (ages 6-18, N = 296) completed the Eating Disorder Examination-Questionnaire (EDE-Q), the seven-item Generalized Anxiety Disorder Questionnaire (GAD-7), and the nine-item Patient Health Questionnaire (PHQ-9). RESULTS: After removing item 10, the 11-item version of the EDE-QS-P showed borderline adequate fit to the one factor solution and strong internal consistency (α = 0.91). This measure also demonstrated strong convergent validity with child scores on the EDE-Q (r = .69), and moderate convergent validity with child scores on the GAD-7 (r = .37) and PHQ-9 (r = .46). The EDE-QS-P was able to differentiate children with EDs characterized by body image disturbances (e.g. anorexia nervosa) from those with avoidant/restrictive food intake disorder, who do not experience shape or weight concerns. DISCUSSION: The 11-item EDE-QS-P may be a promising parent-report measure of ED pathology in children and adolescents.

Attachment and mentalization as predictors of outcome in family therapy for adolescent anorexia nervosa.

Anorexia nervosa-focussed family therapy (FT-AN) is the first-line treatment for adolescent anorexia nervosa (AN), but the predictors of poor treatment response are not well understood. The main aim of this study was to investigate the role of attachment and mentalization in predicting treatment outcome. The secondary aims of the study were to investigate therapeutic alliance at 1 month as a predictor of outcome, and to test the associations between alliance and baseline attachment and mentalization. 192 adolescents with AN and their parents were recruited as they began family therapy in out-patient specialist eating disorder services. Self-report measures of attachment, mentalization, and emotion regulation were completed at the start of treatment by adolescent patients and one of their parents. Self-reported alliance scores were collected at one month. Higher scores on the Certainty Scale of the Reflective Functioning Questionnaire, completed by parents, which indicate over-certainty about mental states, were the strongest predictor of poor outcome (Odds Ratio: 0.42, CI: 0.20-0.87). Similarly, for adolescents, higher Lack of Clarity scores on the Difficulties in Emotion Regulation Scale, representing being unclear about one's feelings, were predictive of positive treatment outcome (OR: 1.10, CI: 1.00-1.21). Higher alliance scores at 1 month predicted positive outcome, and were associated with attachment security and mentalization. These novel findings suggest that, particularly in parents, a tendency towards excessive certainty about mental states in others may predict poor outcome in FT-AN. Further research is warranted to replicate the finding and characterise families at risk of poor outcome.

A framework for conceptualising early intervention for eating disorders.

OBJECTIVE: This paper outlines the evidence base for early intervention for eating disorders; provides a global overview of how early intervention for eating disorders is provided in different regions and settings; and proposes policy, service, clinician and research recommendations to progress early intervention for eating disorders. METHOD AND RESULTS: Currently, access to eating disorder treatment often takes many years or does not occur at all. This is despite neurobiological, clinical and socioeconomic evidence showing that early intervention may improve outcomes and facilitate full sustained recovery from an eating disorder. There is also considerable variation worldwide in how eating disorder care is provided, with marked inequalities in treatment provision. Despite these barriers, there are existing evidence-based approaches to early intervention for eating disorders and progress is being made in scaling these. CONCLUSIONS: We propose action steps for the field that will transform eating disorder service provision and facilitate early detection, treatment and recovery for everyone affected by eating disorders, regardless of age, socioeconomic status and personal characteristics.

Compliance of participants undergoing a '5-2' intermittent fasting diet and impact on body weight.

BACKGROUND: Intermittent fasting (IF) has grown in popularity as a weight loss tool, where caloric intake is fully/partially restricted on a recurring basis. This study aimed to assess compliance with IF fast-day calorie restriction and whether 5-2 IF leads to reduced overall energy intake, weight loss and compensatory increased energy intake on non-fast days. METHOD: Participants completed diet diaries at baseline and 28 days post 5-2 IF in a repeated measures within-subjects design. 5-2 IF required restricted energy intake to 500 kcal/day (women), 650 kcal/day (men) on two 'fast' days/week whilst eating ad-libitum on other days. RESULTS: 52 participants were included (n = 42 female; age 44 ± 11.2yrs). Median weight loss after 28 days 5-2 IF was statistically significant (1.8 [-2 - 7.3 IQR = 2.2]kg; 2.8 [-2.7-11.2 IQR = 2.5]% p < 0.001). There was a significant reduction in total energy intake during 5-2 IF compared with pre-diet (median 1288.0 [IQR 423.8]kcal and median 1751.5 [IQR 505.3]kcal respectively, p < 0.001). Carbohydrate, protein and fat consumption proportionately reduced during 5-2 IF. Participants had significantly higher energy intake (p < 0.001) on non-fast days that followed a fast day (1928.4 ± 711.9 kcal) compared to non-fast days not following a fast day (1316.2 ± 310.0 kcal). 55.8% complied with fast day calorie restrictions. CONCLUSION: 5-2 IF was associated with significantly reduced energy intake, and weight loss over a 28-day period. Compliance rate was lower than most previous studies. Participants had significantly higher energy intake on non-fast days following fast days suggesting fasting may lead to over-compensation. Further research should investigate strategies to improve compliance and long-term sustainability of IF diets.

Towards identifying a method of screening for autism amongst women with restrictive eating disorders.

OBJECTIVE: Up to 37% of patients with anorexia nervosa score above cut-off on autism screening measures. These individuals typically have poorer outcomes from standard eating disorder interventions and could therefore benefit from adaptations. Accurately identifying these individuals is important for improving autism referral processes and clinical pathway decisions. This study's aim was to identify subscales of questionnaires measuring constructs associated with either autism or eating disorders that, when combined with traditional autism screening measures, would improve the ability to identify women with restrictive eating disorders who might benefit from a full autism assessment. METHOD: One hundred and sixty women with restrictive eating disorders, with (n = 42) or without (n = 118) an autism diagnosis completed a battery of questionnaires. Using conditional stepwise binary logistic regression, we attempted to improve the autism spectrum quotient 10 item's (AQ-10) ability to discriminate between autistic and non-autistic women in a restrictive eating disorder sample. RESULTS: In a binary logistic regression model, the AQ-10 reliably discriminated between autistic and non-autistic women with an accuracy rate of 85% but had relatively low (69%) sensitivity, reflecting a high rate of false negatives. Adding three subscales to the model (Glasgow Sensory Questionnaire Auditory, Camouflaging Autistic Traits Questionnaire Compensation and Toronto Alexithymia Scale Externally Orientated Thinking) significantly improved its differentiating ability (accuracy = 88%, sensitivity = 76%, specificity = 92%). CONCLUSIONS: We have identified three subscales that, when used in combination with the AQ-10, may help clinicians understand the pattern of autistic traits in their patients with a restrictive eating disorder. This can inform clinical decisions about whether to refer for a full autism assessment and whether to adapt standard eating disorder treatments to accommodate autistic traits. Future studies are needed to test the model in samples where participants have undergone a full autism assessment.

A comparison of the eating disorder service experiences of autistic and non-autistic women in the UK.

OBJECTIVE: Qualitative studies report that autistic women have poor experiences when being treated for an eating disorder (ED) and express that ED services are not appropriately tailored to meet their needs. It is unclear whether their experience differs to other women accessing ED services. The aim of the current study was to compare autistic and non-autistic women's ED illness history and experiences in ED services. METHOD: An online survey about ED illness history and their experience with ED treatment was completed by 46 autistic women with a restrictive ED and 110 non-autistic women with a restrictive ED. RESULTS: Despite some similarities, there were three key differences in the experiences reported by autistic and non-autistic women. First, autistic women reported a longer duration of ED and being diagnosed with an ED at a younger age than non-autistic women. Second, autistic women reported accessing a broader range of healthcare settings and ED treatments than non-autistic women when being treated for an ED. Finally, autistic women rated their experiences of inpatient care, dietetic input, and cognitive behavioural therapy (CBT) as significantly less beneficial than non-autistic women when being treated for an ED. CONCLUSION: These findings increase understanding of autistic women's ED experience and can help to shape ED services and treatments to better accommodate the needs of their autistic clients.

"We Have to Try to Find a Way, a Clinical Bridge" - autistic adults' experience of accessing and receiving support for mental health difficulties: A systematic review and thematic meta-synthesis.

Co-occurring mental health difficulties among autistic adults are common and this association has implications for mental health services. Gaining a comprehensive understanding of autistic adults' experiences of accessing and receiving mental health support is a critical step to fully inform service provision. We conducted a systematic review and meta-synthesis of qualitative studies exploring autistic adults' mental health service experiences, triangulating the perspectives of autistic adults, clinicians and parents. Electronic database searches in MEDLINE, PsycINFO and Embase were conducted up to October 2021. This identified 10,068 studies, of which 38 met study inclusion criteria. Using a thematic synthesis approach, we generated three superordinate analytical themes "Lonely, difficult service experience", "Complexity needs flexibility" and "Collaboration and empowerment", each with several subthemes. Our findings show that currently, mental health services do not adequately support autistic adults, and can even cause additional harm. There is a need for a more flexible, comprehensive and holistic approach, considering how being autistic affects the individual's mental health presentation and tailoring support to their needs. Building trusting relationships, listening to autistic adults, and empowering them to take agency, appear to be fundamental steps towards more successful mental health care provision.

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.

Interviewing anorexia: How do individuals given a diagnosis of anorexia nervosa experience Voice Dialogue with their eating disorder voice? A qualitative analysis.

A proportion of individuals given an eating disorder diagnosis describe the experience of an eating disorder 'voice' (EDV). However, methods for working with this experience are currently lacking. Voice Dialogue (Stone & Stone, 1989) involves direct communication between a facilitator and parts of the self to increase awareness, understanding, and separation from inner voices. Adapted forms of this method have shown promise in working with voices in psychosis. This study aimed to explore the experience and acceptability of Voice Dialogue amongst individuals with anorexia nervosa who experience an EDV. Nine women participated in a semistructured interview following a single Voice Dialogue session. Interview transcripts were analysed using interpretative phenomenological analysis (IPA). Three overarching themes were identified as follows: (i) "separating from the EDV"; (ii) "better understanding of the EDV"; and (iii) "hopeful, motivated, and afraid of recovery". The majority of participants found Voice Dialogue acceptable and helpful for exploring their EDV. Whilst preliminary, the results suggest that Voice Dialogue has potential in terms of helping individuals establish a more constructive relationship with their EDV and motivating change. Further research is needed to build upon these findings. Implications for addressing the EDV using voice-focused interventions are explored.

How Does Fasting Affect Cognition? An Updated Systematic Review (2013-2020).

PURPOSE OF REVIEW: The goal of this review was to provide an update on the literature examining how voluntary, temporary abstention from eating impacts cognitive function. RECENT FINDINGS: We evaluated peer-reviewed articles published between August 2013 and January 2021 that assessed adults, included a measure of cognitive functioning with neutral stimuli, and compared individuals in a fasted state to individuals in a fed state (either within- or between-subject designs). Nineteen articles (21 studies) met inclusion criteria. Sample sizes, fasting methods, and tasks varied across studies. Review of studies indicated that fasting was associated with deficits in cognitive functioning; few studies indicated a benefit in cognitive functioning following a single voluntary fast. The heterogeneity and rarity of available studies limits the conclusions that can be drawn. Several crucial psychosocial and sociodemographic moderators remain unexplored. Recommendations for future work are discussed.

Understanding risk factors for disordered eating symptomatology in athletes: A prospective study.

Disordered eating and eating disorders have huge impact on athletic health and performance. Understanding risk factors for disordered eating development is paramount to protecting the health and performance of these athletes. This project tested a model longitudinally to test whether body dissatisfaction (mediated by negative affect) and societal pressures (mediated by internalisation) predicted bulimic symptomatology at 1 year. The study recruited 1017 male and female athletes in a range of sports at three time points over a year. Cross-lag meditation modelling in MPLUS was utilised to test the hypothesised model. Results indicated that societal pressures mediated by general internalisation led to bulimic symptomatology and that gender and sport type do moderate the relationships. However, measurement issues indicate that scales not originally created for athletes may not reliably measure athletes' experience. This research highlights how understanding how to better assess risk factors and disordered eating related concepts in athletes is a key next step. The study is unique in its longitudinal design and in its sampling of a wide range of sports in both male and female athletes.

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.

A Qualitative Exploration of Sport and Social Pressures on Elite Athletes in Relation to Disordered Eating.

Introduction: Athletes are at increased risk of disordered eating compared to non-athletes. Inspired by previous investigation into quantitative work on an etiological model of disordered eating in athletes, the current study aimed to explore a problematic aspect of the model: athletes' lived experiences of social and sport pressures in relation to the onset of disordered eating and differing eating behaviors. Methods: Nine (N = 9) male and female athletes representing a range of endurance sports took part in semi-structured interviews. Thematic analysis was utilized. Analysis: Analysis revealed two main themes each with two corresponding subthemes (1) Conflating physical appearance and sporting ability with the subthemes of (1a) social comparison in a sporting world and (1b) societal notions of "the athlete body" and (2) Living as an athlete with the corresponding subthemes of (2a) discipline and sacrifice and (2b) the balancing act. Discussion: It is the complex interaction between societal expectations as lived out in social messages and comparisons, and sport pressures that contributes to the development of disordered eating behaviors. These findings suggest that prevention and treatment of disordered eating in athletes can be applied from those already established in non-sporting realm.

'It's not that they don't want to access the support . . . it's the impact of the autism': The experience of eating disorder services from the perspective of autistic women, parents and healthcare professionals.

LAY ABSTRACT: This study explores autistic women's experiences of eating disorder services. About 20%-30% of people with anorexia nervosa are also autistic, and current treatments seem not to work as well for them. We interviewed 15 autistic women with experience of anorexia nervosa, 12 parents of autistic women with anorexia nervosa, and 11 healthcare professionals working in eating disorder services. We asked autistic women and parents about their experiences of eating disorder services, and we asked healthcare professionals about their experiences treating autistic women with anorexia nervosa. Participants' views were represented by three overall themes: misunderstanding autism and autistic traits, one treatment does not fit all, and improving accessibility and engagement within services. We found that autistic women face many barriers when in treatment for anorexia nervosa, often because of a lack of autism understanding within eating disorder services. Future research should look at developing anorexia nervosa treatments that can specifically help autistic individuals.

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.