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.

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.

Moving online: young people and parents' experiences of adolescent eating disorder day programme treatment during the COVID-19 pandemic.

BACKGROUND: This study examined the experiences of young people and their parents who attended an intensive day treatment programme for eating disorders online during the global COVID-19 pandemic. METHODS: Online questionnaires were completed by 14 adolescents (12-18 years) and their parents (n = 19). The questionnaires included a mixture of rating questions (Likert scale) and free text responses. Free text responses were analysed using reflexive thematic analysis. RESULTS: Three main themes were identified: 1) New discoveries, 2) Lost in translation and 3) The best of a bad situation. This study provides insight into the benefits and pitfalls of online treatment delivery in the adolescent day programme context, which has rapidly had to become part of the everyday therapeutic practice. Results indicate that there are advantages and disadvantages to this, and that parents and young people's views differed. CONCLUSIONS: This study suggests that the increased accessibility provided by online working does not necessarily translate to increased connection. Given the importance of therapeutic alliance in treatment outcomes, this will be an important consideration for future developments of online intensive treatments.

This study examined the experiences of young people and their parents who attended an intensive day treatment programme for anorexia online during the COVID-19 pandemic. Online questionnaires were completed by 14 patients aged 12­18 years and 19 of their parents. The questionnaires included a mixture of rating questions (for example: How would you rate your experience with online therapy from 1 to 10?) and free text responses. The authors explored the free text responses and identified three common themes. These were 1) New discoveries- for the parents and young people, online therapy was a new experience, 2) Lost in translation- working online meant some aspects of communication were lost, 3) The best of a bad situation- online therapy was better than no therapy at all. This study provides insight into the benefits and pitfalls of online therapy in a day programme setting. Specifically, this study suggests that the increased accessibility provided by online working, does not necessarily translate to increased connection. Given the importance of building a positive and trusting relationship between the young person, their family and their therapist, this will be an important consideration when thinking about future development of online treatment programmes.

Multi-family therapy for bulimia nervosa in adolescence: a pilot study in a community eating disorder service.

Multi-family therapy for Bulimia Nervosa (MFT-BN) was developed in response to the modest outcomes following both Family Therapy and Cognitive Behavior Therapy for adolescents with BN. BN impacts individuals and their family members with high levels of carer stress. MFT-BN targets barriers to treatment including low motivation to change, hostility and criticism, negative affect alongside emotion dysregulation and common comorbidities. MFT-BN enhances treatment, providing a community of support and acquisition of emotional regulation and interpersonal skills. The study describes the clinical characteristics of the group of participants to whom MFT-BN is offered and presents the outcomes of families who have participated in it. Prior to MFT-BN, adolescents who received it were more likely to have self-harmed and had elevated levels of eating disordered cognitions than those who did not receive MFT-BN. Following MFT-BN, parents report decreases in the negative experiences of caregiving and in their own symptoms of anxiety. Adolescents report reductions in anxiety and depression alongside improvement in emotion regulation. Improvements in symptoms of eating disorders include reductions in eating disorder cognitions and modest reductions in binge and purge symptoms after 14 weeks of treatment. Adolescents who participated in MFT-BN were less likely to drop out of outpatient treatment.

Intensive treatment program (ITP): A case series service evaluation of the effectiveness of day patient treatment for adolescents with a restrictive eating disorder.

OBJECTIVE: Family Therapy for Anorexia Nervosa (FT-AN) is the first line treatment for adolescents with anorexia nervosa in the UK. However, research suggests between 10 and 40% of young people have a poor outcome. For those for whom FT-AN alone is not effective there is a clear need to develop additional treatments. This paper describes the effectiveness of an additional treatment for adolescents who had not responded to FT-AN, the Intensive Day Treatment Program (ITP) embedded within a comprehensive outpatient service at the Maudsley Hospital. METHOD: Data from a retrospective chart review of patient files were analyzed for 105 young people aged 11-18 with restrictive eating disorders referred to the program in the first four and a half years of its operation. RESULTS: Young people attended ITP for only on average 28.41 days. Over this time they made significant improvements in a range of domains, including weight gain, eating disorder symptomatology, motivation to recover, quality of life and comorbid symptomatology. Young people continued to make improvements post ITP in outpatient treatment provided by the same service and 73.2% had a good or an intermediate outcome at the point of discharge from the service. DISCUSSION: This uncontrolled case series indicates that ITP can contribute to positive outcomes for young people who require intensification of treatment. ITP outcomes are discussed in comparison to the published literature concerning day programs for adolescents with a diagnosis of an eating disorder.

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.

Screening for co-occurring conditions in adults with autism spectrum disorder using the strengths and difficulties questionnaire: A pilot study.

Adolescents and adults with autism spectrum disorder (ASD) are at elevated risk of co-occurring mental health problems. These are often undiagnosed, can cause significant impairment, and place a very high burden on family and carers. Detecting co-occurring disorders is extremely important. However, there is no validated screening tool for this purpose. The aim of this pilot study is to test the utility of the strengths and difficulties questionnaire (SDQ) to screen for co-occurring emotional disorders and hyperactivity in adolescents and adults with ASD. The SDQ was completed by 126 parents and 98 individuals with ASD (in 79 cases both parent and self-report were available from the same families). Inter-rater reliability, test-retest stability, internal consistency, and construct validity were examined. SDQ subscales were also compared to clinically utilized measures of emotional disorders and hyperactivity to establish the ability to predict risk of disorder. Inter-rater reliability (r = 0.42), test-retest stability (r = 0.64), internal consistency (α = 0.52-0.81) and construct validity (r = 0.42-0.57) for the SDQ subscales were comparable to general population samples. Parent- and self-report SDQ subscales were significantly associated with measures of anxiety, depression and hyperactivity (62-74% correctly classified). Parent-report performed significantly better than self-report; adults with ASD under-reported difficulties. The SDQ shows promise as a simple and efficient way to screen for emotional disorders and hyperactivity in adolescents and adults with ASD that could help reduce the impact of these disorders on individuals and their families. However, further more systematic attempts at validation are warranted. Autism Res 2016, 9: 1353-1363. © 2016 International Society for Autism Research, Wiley Periodicals, Inc.

Diagnosing autism spectrum disorder in community settings using the Development and Well-Being Assessment: validation in a UK population-based twin sample.

BACKGROUND: Increasing numbers of people are being referred for the assessment of autism spectrum disorder (ASD). The NICE (UK) and the American Academy of Pediatrics recommend gathering a developmental history using a tool that operationalises ICD/DSM criteria. However, the best-established diagnostic interview instruments are time consuming, costly and rarely used outside national specialist centres. What is needed is a brief, cost-effective measure validated in community settings. We tested the Development and Well-Being Assessment (DAWBA) for diagnosing ASD in a sample of children/adolescents representative of those presenting in community mental health settings. METHODS: A general population sample of twins (TEDS) was screened and 276 adolescents were selected as at low (CAST score < 12; n = 164) or high risk for ASD (CAST score ≥ 15 and/or parent reported that ASD suspected/previously diagnosed; n = 112). Parents completed the ASD module of the DAWBA interview by telephone or online. Families were visited at home: the ADI-R and autism diagnostic observation schedule (ADOS) were completed to allow a best-estimate research diagnosis of ASD to be made. RESULTS: Development and Well-Being Assessment ASD symptom scores correlated highly with ADI-R algorithm scores (ρ = .82, p < .001). Good sensitivity (0.88) and specificity (0.85) were achieved using DAWBA computerised algorithms. Clinician review of responses to DAWBA questions minimally changed sensitivity (0.86) and specificity (0.87). Positive (0.82-0.95) and negative (0.90) predictive values were high. Eighty-six per cent of children were correctly classified. Performance was improved by using it in conjunction with the ADOS. CONCLUSIONS: The DAWBA is a brief structured interview that showed good sensitivity and specificity in this general population sample. It requires little training, is easy to administer (online or by interview) and diagnosis is aided by an algorithm. It holds promise as a tool for assisting with assessment in community settings and may help services implement the recommendations made by NICE and the American Academy of Pediatrics regarding diagnosis of young people on the autism spectrum.