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

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.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.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.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.V

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

PurposeThis study aimed to explore how parents of young people with a restrictive eating disorder (ED) experience and manage uncertainty.MethodsSeventeen 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.ResultsData 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.ConclusionParents 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 evidenceLevel V: Opinions of authorities, based on descriptive studies, narrative reviews, clinical experience, or reports of expert committees

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. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s40337-022-00553-6

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. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s40337-022-00535-8

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

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

Abstract 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

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

Plain English summary 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