How young people perceive change to occur in family therapy for anorexia nervosa: a qualitative study.

BACKGROUND: Family therapy for anorexia nervosa (FT-AN) is the first line recommended treatment for child and adolescent anorexia nervosa. Despite evidence of its efficacy, little is understood about the treatment mechanisms. This study aimed to understand how young people who have received FT-AN perceive change to occur across treatment. METHOD: Fifteen adolescents (age 12-18 years) completed individual semi-structured interviews online. Recordings were transcribed verbatim and analysed using reflexive thematic analysis. RESULTS: Four inter-connected themes describing the process of change during treatment were generated; (1) relationships as the vehicle for change, (2) an awakening, (3) through, not around - no way out, (4) the life beyond. CONCLUSIONS: Current data match relatively closely with theoretical models of FT-AN and emphasise the importance of building trust with all family members, including the young person. Additionally, supporting the family to create a trusting context in which there is a sense that the only way out of the illness is by going through it (rather than avoiding it) is critical. Empirical investigation of each of the described mechanisms is needed.

Family therapy for anorexia nervosa (FT-AN) is the first line recommended treatment for child and adolescent anorexia nervosa. While outcomes are generally good, little is understood about how the treatment works. This study aimed to understand how young people who have received FT-AN perceive change to occur across treatment. Fifteen adolescents (age 12­18 years) completed individual interviews online. All interviews followed a similar structure, with recordings transcribed word-for-word and analysed using a methodology called reflexive thematic analysis. Four inter-connected themes were generated from the interviews; (1) relationships as the vehicle for change, (2) an awakening, (3) through, not around ­ no way out, (4) the life beyond. These themes match relatively closely with descriptions of FT-AN theory and emphasise the importance of building trust with all family members in treatment, including the young person. Additionally, supporting the family to create a trusting context in which there is a sense that the only way out of the illness is by going through it (rather than avoiding it). More data are needed to test these ideas empirically and with other populations.

Do People Want the 'New Normal'? A Mixed Method Investigation of Young Person, Parent, and Clinician Experience and Preferences for Eating Disorder Treatment Delivery in the Post-COVID-19 World.

Eating disorder treatment was predominantly provided online during the COVID-19 pandemic, which has continued into the post-pandemic world. This mixed method study explored young person, parent/caregiver, and clinician experiences of child and adolescent eating disorder treatment. In total, 90 participants (25 young people, 49 parents/caregivers, and 16 clinicians) completed online surveys about the experience of online working. Data were compared to similar data collected by the same service earlier in the pandemic. The results show that preferences are largely unchanged since 2020; online treatment is considered helpful and acceptable by all groups. Nevertheless, face-to-face assessment sessions (young people: 52.2%; and parents/caregivers: 68.9%) and final sessions (young people: 82.6%; and parents/caregivers: 82.2%) were preferred compared to online. There was also a preference for early treatment sessions to either be always or mostly face-to-face (young people: 65.2%; and parents/caregivers: 73.3%). The middle and latter parts of treatment were a time when preferences shifted slightly to a more hybrid mode of delivery. Participants reported finding engagement with the therapist (young people: 70.6%; and parents/caregivers: 52.5%) easier during face-to-face treatment. Stepping away from the binary of online or face-to-face, the current data suggest that a hybrid and flexible model is a way forward with current findings providing insights into how to structure this.

Perceived change mechanisms in multi-family therapy for anorexia nervosa: A qualitative follow-up study of adolescent and parent experiences.

OBJECTIVE: Multi-family therapy (MFT-AN) is a promising group-based treatment for adolescent anorexia nervosa. This study aimed to explore how young people and parents perceived change to occur during MFT treatment. METHODS: Young people (10-18 years) diagnosed with anorexia nervosa or atypical anorexia nervosa and their parents who completed MFT-AN alongside family therapy for anorexia nervosa within the preceding 2 years were eligible for this study. Semi-structured qualitative interviews were conducted. Recordings were transcribed verbatim and analysed using reflexive thematic analysis. RESULTS: Twenty-three participants (8 young people, 10 mothers and 5 fathers) completed interviews. Five main themes were identified; (1) Powerful connection, (2) Intensity, (3) New learning and perspective shifts, (4) Comparisons, and (5) Discharge is not recovery. There was a strong sense that being with others in a similar position in an intense environment were key factors in promoting change. Comparisons were inevitable and could promote insight and foster motivation, but could also be unhelpful at times. Participants spoke about how recovery continues beyond service use and requires ongoing attention and support. CONCLUSIONS: Through the mechanisms of connection, intensity, new learning and comparisons change is perceived to occur in MFT-AN. Some of these are considered unique to this treatment format.

Adolescent experience of radically open dialectical behaviour therapy: a qualitative study.

BACKGROUND: Radically Open Dialectical Behaviour Therapy (RO DBT) is a novel transdiagnostic treatment that targets 'maladaptive overcontrol'; a transdiagnostic cluster of traits associated with excessive emotional and behavioural inhibitory control. Outcomes are promising for adults with a range of psychiatric disorders. No study to date has explored the adolescent experience of RO DBT. METHODS: Of the 25 eligible adolescents who received RO DBT between March 2015 and April 2017, 15 (14-17 years) consented and completed a semi-structured interview about their experience of treatment within 1 month of discharge. Interviews were recorded and then transcribed manually. Free text responses were analysed using reflexive thematic analysis. RESULTS: The majority (n = 13) had a primary diagnosis of anorexia nervosa, although comorbidity was the norm, with 80.0% having two or more predicted comorbid psychiatric diagnoses. All had received some prior psychological treatment. Four themes were identified from analysis of transcripts: 1) Broadening Horizons, 2) Building Connections, 3) Flexibility, 4) Information Overload. Generally, RO DBT was perceived as helpful in both content and process. The focus on social and broader well-being, rather than specific mental health symptoms, was considered beneficial by many. Adolescents appreciated the group-based format of skills classes and reported benefiting from learning and practicing skills each week. The fourth theme, Information Overload, highlighted that for some, the amount of content felt overwhelming and that it was hard to remember and digest all the information, suggesting that adaptations, or simplifications, may be required to ensure accessibility for adolescents. CONCLUSIONS: RO DBT is perceived as a relevant and beneficial new treatment for adolescents with maladaptive overcontrol. The broad treatment focus is perceived as unique and of particular benefit. It is reported to help with general and social functioning and foster cognitive and behavioural flexibility. Nevertheless, the amount and complexity of material was felt to be very large by some and may suggest the need for modified adolescent-specific materials.

From efficacy to effectiveness: child and adolescent eating disorder treatments in the real world (Part 2): 7-year follow-up.

BACKGROUND: Eating disorders are often characterised as disabling, chronic or relapsing conditions with high mortality rates. This study reports follow-up outcomes for patients seen at the Maudsley Centre for Child and Adolescent Eating Disorders (MCCAED), whose end of treatment outcomes are reported in a separate paper. METHODS: Three-hundred-and-fifty-seven former patients, who received evidence-based treatment for an eating disorder as a child or adolescent in MCCAED between 2009 and 2014 were eligible to participate. Current contact information was available for 290, of whom 149 (51.4%) consented to follow-up. Participants were sent links to online questionnaires, with additional demographic information extracted from medical records. Descriptive analyses of key socioeconomic and health outcomes were performed on data collected. RESULTS: Mean length of follow-up was 6 years 11 months. Ten (6.7%) participants reported a current diagnosis of an eating disorder at follow-up. The great majority reported no (63.8%) or minimal (26.8%) interference from eating disorder difficulties. More than half (53.6%) reported other mental health diagnoses with most reporting no (33.8%) or minimal (50.7%) interference from those difficulties. One third (33.3%) had sought help for an eating disorder and around 20% received prolonged/intensive treatment during the follow-up period. Approximately 70% had sought treatment for other mental health difficulties (mostly anxiety or depression) and 35.4% had substantial treatment. At follow-up more than half (55.5%) reported doing generally well, and around two-thirds reported general satisfaction with their social well-being (65%). The majority (62.7%) had a good outcome on the Morgan Russell criteria, which was consistent with low self-reported ratings on EDE-Q, and low impact of eating disorder or mental health symptoms on work and social engagement. Most of the former patients who had day and/or inpatient treatment as a part of their comprehensive integrated care at MCCAED did well at follow-up. CONCLUSIONS: Young people seen in specialist eating disorder services do relatively well after discharge at longer-term follow-up especially regarding eating disorders but less favourably regarding other mental health difficulties. Few reported a diagnosable eating disorder, and the great majority went on to perform similarly to their peers in educational and vocational achievements.

The aim of this study was to evaluate the long term outcome of children and adolescents who had received evidence-based treatments for an eating disorder in a specialist eating disorders service. The study was designed in collaboration with former service users, to ensure that measures of recovery were relevant to people with lived experience. One-hundred-and-forty-nine former patients consented to participate and completed online questionnaires. Very few (6.7%) reported having an eating disorder at follow-up, however, more than half (53.6%) reported other mental health difficulties during the follow up period. One third sought help for an eating disorder and around 20% had prolonged and intensive eating disorder treatment. Approximately 70% sought help for other mental health difficulties and nearly a third had substantial treatment for these during the follow-up period. Regarding education and work, most participants were functioning equivalently to their peers. More than half (55.5%) reported doing generally well with respect to overall well-being, and around two-thirds reported general satisfaction with their social well-being and quality of life. The follow-up study suggests that most young people treated in specialist eating disorder services do relatively well at long-term follow-up, but many continue to need help with other mental health problems.

From efficacy to effectiveness: child and adolescent eating disorder treatments in the real world (part 1)-treatment course and outcomes.

BACKGROUND: Findings from randomised control trials inform the development of evidence-based eating disorder (ED) practice guidelines internationally. Only recently are data beginning to emerge regarding how these treatments perform outside of research settings. This study aimed to evaluate treatment pathways and outcomes for a specialist child and adolescent ED service across a five-year period. METHODS: All consecutive referrals between August 2009 and January 2014 seen at the Maudsley Centre for Child and Adolescent Eating Disorders in London were included. Data are reported on for all young people who were offered treatment (N = 357). RESULTS: Most young people referred to the service were diagnosed with anorexia nervosa (AN)/Atypical AN (81%). Treatment for AN/Atypical AN (median 11 months) was predominantly ED focused family therapy (99%). Treatment for bulimia nervosa (BN)/Atypical BN (median seven months) was most commonly a combination of cognitive behavioural therapy and ED focused family therapy (87%). At discharge, 77% of the AN/Atypical AN group had a good or intermediate outcome and 59% of the BN/Atypical BN group reported no or fewer than weekly bulimic episodes. 27% of the AN/Atypical AN group had enhanced treatment with either day- and/or inpatient admissions (AIM group). The %mBMI at 3 months of treatment was strongest predictor of the need for treatment enhancement and more modestly EDE-Q and age at assessment. The AIM group at assessment had significantly lower weight, and higher ED and comorbid symptomatology and went on to have significantly longer treatment (16 vs. 10 months). At discharge, this group had significantly fewer good and more poor outcomes on the Morgan Russell criteria, but similar outcomes regarding ED and comorbid symptoms and quality of life. When analysis was adjusted for %mBMI at assessment, 1 and 3 months of treatment, differences in Morgan Russell outcomes and %mBMI were small and compatible with no difference in outcome by treatment group. CONCLUSIONS: This study shows that outcomes in routine clinical practice in a specialist community-based service compare well to those reported in research trials. The finding from research trials that early weight gain is associated with improved outcomes was also replicated in this study. Enhancing outpatient treatment with day treatment and/or inpatient care is associated with favourable outcome for most of the young people, although a longer duration of treatment is required.

Most research reports on outcomes for clinical trials. This study aimed to evaluate outcomes in a 'real world' setting of a specialist child and adolescent eating disorder service (ED) in the UK. Case notes of 357 young people seen for treatment between August 2009 and January 2014 were reviewed. Demographic and treatment characteristics, physical health, ED symptoms, other psychological symptoms and quality of life data are reported. Most young people referred had anorexia nervosa or related difficulties and most received ED focused family therapy. At the end of treatment, the majority had a good or intermediate outcome, regardless of ED diagnosis. In a quarter of the young people, their treatment was enhanced with day or inpatient admissions. This group had more severe difficulties at assessment and had longer treatment but had similar outcomes at the end of treatment.

The experience of intolerance of uncertainty for parents of young people with a restrictive eating disorder.

PURPOSE: This study aimed to explore how parents of young people with a restrictive eating disorder (ED) experience and manage uncertainty. METHODS: Seventeen parents of young people with a restrictive ED were recruited from multi-family therapy groups run within a specialised ED clinic. Five focus groups were conducted asking parents about their experience of uncertainty both prior and after the onset of their child's illness. RESULTS: Data were analysed using interpretative phenomenological analysis which yielded seven superordinate themes. (1) Anorexia nervosa and uncertainty, (2) Positive and negative experiences of uncertainty (3), Helpful and unhelpful ways of coping with uncertainty, (4) Parent's self-efficacy and uncertainty (5), Needs of parents, (6) Parents' perceptions of intolerance of uncertainty in their children and (7) Impact of uncertainty on family life. CONCLUSION: Parents caring for young people with a restrictive ED exhibit a strong intolerance of uncertainty, particularly in relation to their child's illness. This 'negative uncertainty' was thought to reduce their confidence as parents in how they managed their child's ED. Targeting high levels of intolerance of uncertainty in parents caring for young people with an ED could be beneficial for supporting parents when faced with their child's illness, increasing parental self-efficacy, decreasing accommodating behaviours and ultimately contributing to improved treatment outcomes. LEVEL OF EVIDENCE: Level V: Opinions of authorities, based on descriptive studies, narrative reviews, clinical experience, or reports of expert committees.

Radically open dialectical behaviour therapy adapted for adolescents: a case series.

BACKGROUND: Overcontrol is a transdiagnostic cluster of traits associated with excessive psychological, behavioural and social inhibitory control. It is associated with psychiatric diagnoses of depression, restrictive eating disorders and/or obsessive-compulsive personality disorder. Radically Open Dialectical Behaviour Therapy is a transdiagnostic treatment for maladaptive overcontrol. This case series evaluates an adolescent adaption (RO-A) for a transdiagnostic group of adolescents identified as overcontrolled. METHODS: Twenty-eight adolescents were consecutively referred for RO-A from two different National and Specialist Child and Adolescent Mental Health Services between June 2017 and February 2020. Baseline self-report measures assessed overcontrol characteristics, relationship and attachment quality and mental health symptoms of depression and eating disorders, which were repeated at discharge. RESULTS: Adolescents in this case series reported high rates of depression (78.6%), self-harm (64.3%) and eating disorders (78.6%). Most (85.7%) had two or more mental health diagnoses and all had previous mental health treatments before starting RO-A. The mean number of RO-A sessions attended was 18 group-based skills classes and 21 individual sessions over a mean period of 34 weeks. Significant improvements with medium and large effect sizes were reported in cognitive flexibility (d = 1.63), risk aversion (d = 1.17), increased reward processing (d = .79) and reduced suppression of emotional expression (d = .72). Adolescents also reported feeling less socially withdrawn (d = .97), more connected to others (d = 1.03), as well as more confident (d = 1.10) and comfortable (d = .85) in attachment relationships. Symptoms of depression (d = .71), eating disorders (d = 1.06) and rates of self-harm (V = .39) also significantly improved. Exploratory correlation analyses suggest improvements in overcontrol are moderately to strongly correlated with improvements in symptoms of depression and eating disorders. CONCLUSIONS: This case series provides preliminary data that RO-A may be an effective new treatment for adolescents with overcontrol and moderate to severe mental health disorders like depression and eating disorders. RO-A led to improved management of overcontrol, improved relationship quality and reduced mental health symptoms. Further evaluation is indicated by this case series, particularly for underweight young people with eating disorders. More rigorous testing of the model is required as conclusions are only tentative due to the small sample size and methodological limitations.

Is this the 'new normal'? A mixed method investigation of young person, parent and clinician experience of online eating disorder treatment during the COVID-19 pandemic.

INTRODUCTION: Prior to the COVID-19 pandemic, research in virtual care for young people with eating disorders was preliminary and implementation rare. This study explored the experience of young people, parents and clinicians when therapy was transitioned to virtual provision as a result of the UK lockdown in March 2020. METHODS: A mixed-method approach was used in this study. Online questionnaires that included a mixture of rating (Likert scale) and free-text response questions were completed by 53 young people with any eating disorder, 75 parents and 23 clinicians. Questions focused on the experience of online treatment as well as the impact on engagement, perceived treatment efficacy and preferences around treatment mode in the future. Likert scale questions were analysed using a summary approach. Free-text responses were analysed qualitatively using reflexive thematic analysis. RESULTS: Responses to rating scale questions indicate satisfaction with treatment, good engagement and ability to manage technology. Young people who had transitioned care, rather than started care virtually in lockdown, rated therapy as less effective. However, individual accounts of experience were more varied. Reflexive thematic analysis of free-text responses identified key themes of 1) Making it work, 2) Home as a therapeutic space, and 3) Disrupted connection and 4) Into the future. CONCLUSIONS: These results have implications for ongoing care during the pandemic and for future implementation of virtual care in the treatment of young people with eating disorders. Particular issues arising are the trade-off between accessibility and therapeutic engagement and depth and need for consideration of equal access to treatment in socially unequal societies.

Due to the COVID-19 pandemic specialist eating disorder treatment needed to quickly adapt to new technologies. All but urgent and crisis appointments needed to be delivered online. This study looked at what that was like for the young people, their parents and clinicians engaged in treatment in a large specialist eating disorder service in London, UK. Fifty-three young people with an eating disorder, 75 parents and 23 clinicians completed anonymous online surveys about their experience. Results showed that generally people were satisfied with treatment, the therapeutic relationship was maintained and most managed technological issues well. Four main themes were identified from responses to open ended free-text response questions. All three groups wrote about 1) making it work, 2) home as a therapeutic space, and 3) disrupted connection. The fourth theme, 4) into the future, came from parent and clinician responses only. These results have implications for ongoing care during the pandemic and for future implementation of virtual care in the treatment of young people with eating disorders. Particular issues arising are the trade-off between accessibility and the potential impact on the therapeutic relationship. There is also a need to make sure there is equal access to treatment in socially unequal societies.

Same, same but different: Attention bias for food cues in adults and adolescents with anorexia nervosa.

OBJECTIVE: Attention processing for food may be biased in people with Anorexia Nervosa (AN). However, previous studies have had inconsistent results. This is likely to be due to indirect assessment of attention, which does not inform on the underlying attention processes, and/or the heterogeneity of participants across studies, testing either adults or adolescents with AN, that is, people at very different developmental and illness stages. METHOD: Eye-tracking was employed as a direct assessment of attention during a visual probe task with food versus non-food pictures. Attention bias for food was measured in 39 adults and 34 adolescents with AN and in 53 adults and 31 adolescents without AN. RESULTS: All participants had a direction bias for food, specifically for high-calorie food. However, adults with AN subsequently avoided maintaining attention on food versus non-food cues, compared to adults without AN. Adolescents with or without AN demonstrated increased attention maintenance on food versus non-food cues, and, contrary to our hypothesis, did not differ in their attention bias for food cues. Accordingly, adults with AN differed significantly from adolescents with AN in attention maintenance for food cues: while adolescents with AN showed significantly increased attention maintenance on food stimuli, adults avoided maintaining attention on food cues. DISCUSSION: Adults with AN may apply attention strategies to facilitate restrictive eating. This strategy is absent in adolescents with AN. This difference in food-related attention bias between adolescents and adults with AN suggests that attention biases develop over time as the illness progresses.

The experience of intolerance of uncertainty for young people with a restrictive eating disorder: a pilot study.

PURPOSE: Research is consistently reporting elevated levels of intolerance of uncertainty (IU) in individuals with an eating disorder (ED). Less is known about the phenomenology of uncertainty for this clinical group. The present study aims to advance our understanding of the relationship between IU and restrictive EDs by providing insight into young people's subjective experiences of uncertainty. METHODS: Thirteen young people with a restrictive ED were recruited from multi-family therapy groups run within the Maudsley Centre for Child and Adolescent Eating Disorders at the South London and Maudsley NHS Foundation Trust. Three focus groups were conducted asking young people to discuss their views, experiences and coping strategies when faced with uncertainty. RESULTS: Data were analysed using interpretative phenomenological analysis which yielded five superordinate themes: (1) young people perceived uncertainty as something negative; (2) high levels of anxiety and stress were identified as primary responses to uncertainty; (3) ED behaviours were given a functional role in reducing uncertainty; (4) need to control various aspects of young peoples' lives was of high importance; (5) young people discussed how they struggled to find ways to cope with uncertainty and often used behaviours associated with the eating disorder psychopathology as coping strategies. CONCLUSION: Young people's experiences of what uncertainty is like for them revealed a dynamic interplay between ED symptoms and fear of uncertainty. Findings support IU as a relevant concept for young people suffering from a restrictive ED and indicate that further exploration of IU from both theoretical and clinical perspectives could be fruitful. LEVEL OF EVIDENCE: V.

Impact of ASD Traits on Treatment Outcomes of Eating Disorders in Girls.

Evidence links high levels of Autism Spectrum Disorder Traits in women with chronicity of anorexia nervosa. This study reports through clinical audit the impact of ASD traits on treatment outcomes of girls who were referred for treatment in a specialist eating disorder service. Presence of current, but not early childhood, ASD traits was elevated in comparison with previously reported community samples. Current ASD traits were correlated with emotional disorders and with need for treatment augmentation (psychiatric inpatient or day patient admission), but this relationship was not significant after the contribution of depression had been controlled for. There was no difference in Morgan Russell Outcomes at discharge for those with high and low current ASD traits. Parent-reported ASD-related developmental difficulties were associated with attenuated change in self-reported cognitive symptoms of AN. This study highlights the need for further understanding of the aetiology, diagnostic significance and predictive utility for future relapse of elevated ASD traits in childhood eating disorders. Copyright © 2017 John Wiley & Sons, Ltd and Eating Disorders Association.

Testing a cognitive model of generalized anxiety disorder in the eating disorders.

Generalized anxiety disorder (GAD) is one of the most common comorbid disorders found in individuals with eating disorders. Despite this, little is known of shared vulnerability factors between the two disorders. The aim of the present study was to examine the four main components of a cognitive model for GAD in the eating disorders. One hundred and sixty-two females took part. Three groups were formed comprising of 19 participants with an eating disorder and GAD, 70 with an eating disorder without GAD and 73 healthy controls. All completed self-report questionnaires that measured eating attitudes, levels of GAD, intolerance of uncertainty, positive beliefs about worry, negative problem orientation, and cognitive avoidance. Participants with an eating disorder and GAD scored the highest on all four components when compared to healthy individuals and on most components when compared to those with an eating disorder. Participants with an eating disorder without GAD scored higher on all components compared to healthy controls. Findings extend our understanding of shared vulnerability factors between the eating disorders and GAD.

What does uncertainty mean to women with anorexia nervosa? An interpretative phenomenological analysis.

OBJECTIVE: The objective of this study was to explore the construct of intolerance of uncertainty in patients with anorexia nervosa through focus groups. METHOD: Nine women with anorexia nervosa participated in three focus groups in an in-patient, rehabilitation and day care setting. Focus groups probed participants' experiences of uncertainty and the meaning to them of uncertainty on a physical, behavioural, cognitive and emotional level. RESULTS: Data were analysed using Interpretative Phenomenological Analysis (IPA). Patients experienced uncertainty as stressful and wanted to avoid this at all costs. Prominent sources of uncertainty were fear of negative evaluation by others and feelings of being imperfect. Uncertain situations led participants to feel anxious and 'out of control', resulting in a strong desire for control which manifested in extreme organising and planning. DISCUSSION: Results suggest that treatment strategies aimed at increasing tolerance of uncertainty in people with anorexia nervosa could be beneficial.

Intolerance of uncertainty and metacognitions in a non-clinical sample with problematic and normal eating attitudes.

The present study investigates intolerance of uncertainty and metacognitions in individuals with problematic eating attitudes (PEA) and individuals with normal eating attitudes (NEA). It was hypothesised that individuals with PEA will show higher levels of intolerance of uncertainty and metacognitions compared to individuals with NEA, and that the two variables would be positively associated. A non-clinical sample of 116 UK-based university students completed the Eating Attitudes Test (EAT-26), Metacognitions Questionnaire (MCQ-30) and Intolerance of Uncertainty Scale (IUS). Twenty-seven participants formed the PEA group and 89 the NEA group. Results overall supported the hypotheses, participants with PEA scored significantly higher on three of the five metacognition factors, total metacognition score and intolerance of uncertainty compared to participants with NEA. Positive correlations were also found between intolerance of uncertainty and metacognitions. Findings point towards further examining intolerance of uncertainty and metacognitions in the field of eating disorders. Changing metacognitions and targeting high levels of intolerance of uncertainty could contribute to better treatment outcome for individuals with eating disorders.