Gaining consensus on clinical quality outcomes for eating disorders: Framework for the development of an Australian national minimum dataset.

OBJECTIVES: Eating disorders (EDs) are complex psychiatric illnesses requiring multidisciplinary care across both mental and medical healthcare settings. Currently, no nationally comprehensive, consistent, agreed on or mandated data set or data collection strategy exists for EDs in Australia: thus, little is known about the outcomes of care nor treatment pathways taken by individuals with EDs. InsideOut Institute was contracted by the Australian Government Department of Health to develop a minimum dataset (MDS) for the illness group with consideration given to data capture mechanisms and the scoping of a national registry. DESIGN: A four-step modified Delphi methodology was used, including national consultations followed by three rounds of quantitative feedback by an expert panel. SETTING: Due to social distancing protocols throughout the global SARS-CoV-2 pandemic, the study was conducted online using video conferencing (Zoom and Microsoft Teams) (Step 1), email communication and the REDCap secure web-based survey platform (Steps 2-4). PARTICIPANTS: 14 data management organisations, 5 state and territory government departments of health, 2 Aboriginal and Torres Strait Islander advising organisations and 28 stakeholders representing public and private health sectors across Australia participated in consultations. 123 ED experts (including lived experience) participated in the first quantitative round of the Delphi survey. Retention was high, with 80% of experts continuing to the second round and 73% to the third. MAIN OUTCOME MEASURES: Items and categories endorsed by the expert panel (defined a priori as >85% rating an item or category 'very important' or 'imperative'). RESULTS: High consensus across dataset items and categories led to the stratification of an identified MDS. Medical status and quality of life were rated the most important outcomes to collect in an MDS. Other items meeting high levels of consensus included anxiety disorders, depression and suicidality; type of treatment being received; body mass index and recent weight change. CONCLUSIONS: Understanding presentation to and outcomes from ED treatment is vital to drive improvements in healthcare delivery. A nationally agreed MDS has been defined to facilitate this understanding and support improvements.

Transitioning to digital first line intervention - validation of a brief online screener for early identification of a suspected eating disorder: study protocol.

BACKGROUND: Only one in four people with eating disorders seeks treatment, and of those who do seek treatment, 20% go on to experience a chronic course. Early intervention has been associated with better prognosis, with those seeking specialised intervention in the early stages of their illness more than twice as likely to achieve remission. Current screening measures typically require expert administration and are rarely validated across a spectrum of DSM-5 eating disorder presentations or for online use. In light of COVID-19 and increasing reliance on telehealth technologies in the intervention and delivery of mental health services, online assessments suitable for self-referral are likely to be the first step to seeking care. InsideOut Institute has developed a 6-item online screening tool for the purposes of identifying eating disorder risk and symptomatology, aimed specifically at increasing help-seeking behaviour in subsyndromal and early presentations. METHODS: This study investigates the reliability and validity of the InsideOut Institute Screener (IOI-S), using a cross-sectional survey research design. Participants aged 14 and over will complete an extensive baseline survey battery for evaluation. 50% of participants will be randomly selected for one follow-up re-test of the IOI-S only, 2 weeks post initial testing. The IOI-S will be analysed for statistical reliability on two parameters: internal consistency and test re-test reliability, and for statistical validity on four parameters: concurrent validity, sensitivity and specificity, convergent and discriminant validity. DISCUSSION: The rapid and ongoing shift to digital intervention has highlighted gaps and opportunities in our pathways to care. Adequate screening for eating disorders is a major gap. This study aims to validate an online screening tool for use in telehealth early intervention, designed for users seeking information for a suspected eating disorder. The screener meets those at risk 'where they are' (i.e. online) and may improve timely referrals to relevant services. This is of particular salience as face-to-face healthcare and traditional frontline interventions are disrupted, and we are challenged to re-design our practices to deliver diagnostic and treatment services in highly adaptive digital contexts.

Universal healthcare reform for community treatment of eating disorders in Australia: report of the first 2 years of operation.

OBJECTIVE: The Australian Government's landmark 2019 implementation of dedicated Medicare items for people with eating disorders was the first of its kind for a mental illness. We investigate the first 24 months of uptake of these items across regions, settings and healthcare disciplines, including intermediate changes to the program prompted by the COVID-19 pandemic. METHODS: This was a descriptive study using item data extracted from the Australian Medicare Benefits Schedule database for November 2019 to October 2021. Data were cross-tabulated by discipline, setting, consultation type and region. RESULTS: During the first 24 months of implementation of the scheme, 29 881 Eating Disorder Treatment and Management Plans (or care plans) were initiated, mostly by general practitioners with mental health training. More than 265 000 psychotherapy and dietetic sessions were provided, 29.1% of which took place using telehealth during the pandemic. Although the program offers up to 40 rebated psychological sessions, fewer than 6.5% of individuals completed their 20-session review under the scheme. CONCLUSIONS: Uptake of the Medicare item for eating disorders was swift, and the item was used broadly throughout the pandemic. Although feedback from those with lived experience and experts has been overwhelmingly positive, data show that strategic adjustment may be needed and further evaluation conducted to ensure that the reform achieves the best outcomes for patients and families, and its policy intent. Full text.

The impact of the COVID-19 pandemic and associated public health response on people with eating disorder symptomatology: an Australian study.

OBJECTIVE: People with lived experience of eating disorders (ED) may be particularly vulnerable to the COVID-19 pandemic and associated public health response due to exasperating situations such as social isolation, presence of other mental and physical health conditions, disruptions to treatment, etc. This study investigates the association of the pandemic with ED symptomatology to consider impact and identify risk factors for clinical consideration. METHODS: Participants with self-reported ED diagnosis and/or symptomatology over 16 years were invited to complete an online survey during the first months of the pandemic in Australia. Questions included history of ED, occurrence of co-occurring mental health conditions, change in ED symptoms since the start of the pandemic, and validated measures of ED illness, state mental health and loneliness. RESULTS: Of 1723 participants (mode age 24.9 years, 91.6% identifying as female, EDE-Q Global Score x = 4.08, SD = 1.18, 79.0% reporting co-occurring mental health condition, predominantly obsessive-compulsive disorder and/or anxiety), 88.0% reported an increase in body image concerns, 74.1% in food restriction, 66.2% binge eating and 46.8% driven exercise during the pandemic. Increased ED symptomatology was associated with poorer state mental health (i.e., depression, anxiety, and stress) and loneliness across the ED symptom profile. Most participants were negatively impacted by various aspects of the public health response, more so for those with more acute ED illness as measured by the Eating Disorder Examination Questionnaire (EDE-Q). CONCLUSIONS: Associated with the COVID-19 pandemic is a mental health crisis, particularly for those with a lived experience of an eating disorder. With 40.5% of participants not having sought formal diagnostic assessment and less than half in treatment, this study provides evidence for the detrimental impact of the pandemic on people with a lived experience of an eating disorder, especially for those not yet supported by the health care system.

This study investigates the impact of the COVID-19 pandemic and associated public health response on people with a self-reported lived experience of eating disorders across Australia. A nation-wide online survey of 1723 participants aged 16­80 years indicated eating disorders symptoms increased globally including body image concern (for 88% of participants), food restriction (74%) and binge eating (66%), especially for those reporting more acute eating disorder illness, poorer mental health (including depression, anxiety, and stress) and experience of loneliness. Albeit necessary, several pandemic experiences were identified as being particularly associated with more acute eating disorder illness such as changes in daily routine, social media reactions, restricted access to support people, and changes to treatment. As less than half of the participants were in treatment at assessment and over 40% had never sought formal diagnosis or treatment, this study highlights the prevalence of unidentified and unsupported people in the community experiencing increase eating disorder symptoms during this pandemic and the need for clinical awareness in general medical and mental health practice.

Supported online cognitive behavioural therapy for bulimia nervosa: a study protocol of a randomised controlled trial

Background Despite the availability of effective treatments for bulimia nervosa (BN), a number of barriers to accessibility exist. Examples include access to trained clinicians, the expense of treatment, geographical limitations, and personal limitations such as stigma regarding help seeking. Self-help interventions, delivered via a digital platform, have the potential to overcome treatment gaps by providing patients with standardised, evidence-based treatments that are easily accessible, cost-effective, and require minimal clinician support. Equally, it is important to examine the shortcomings of digital interventions when compared to traditional to face-to-face delivery (e.g., high dropout rates) in order to maximise the therapeutic effectiveness of online, self-help interventions. Methods A three-arm, multisite randomised controlled trial will be conducted in Australia examining the effectiveness and cost-effectiveness of a newly developed online self-help intervention, Binge Eating eTherapy (BEeT), in a sample of patients with full or sub-threshold BN. The BEeT program consists of 10, multimedia sessions delivering the core components of cognitive behaviour therapy. Eligible participants will be randomised to one of three groups: independent completion of BEeT as a purely self-help program, completion of BEeT alongside clinician support (in the form of weekly telemedicine sessions), or waitlist control. Assessments will take place at baseline, weekly, post-intervention, and three-month follow up. The primary outcome is frequency of objective binge episodes. Secondary outcomes include frequency of other core eating disorder behavioural symptoms and beliefs, psychological distress, and quality of life. Statistical analyses will examine treatment effectiveness, feasibility, acceptability and cost effectiveness. Discussion There is limited capacity within the mental health workforce in Australia to meet the demand of people seeking treatment for eating disorders. This imbalance has only worsened following outbreak of the COVID-19 pandemic. Further research is required into innovative digital modes of treatment delivery with the capacity to service mental health needs in an accessible and affordable manner. Self-help programs may also appeal to individuals who are more reluctant to engage in traditional face-to-face treatment formats. This study will provide rigorous evidence on how to diversify treatment options for individuals with BN, ensuring more people with the illness can access evidence-based treatment. The study has been registered with the Australia New Zealand Clinical Trials Registry (ANZCTR Registration Number: ACTRN12619000123145p). Registered 22 January 2019, https://www.australianclinicaltrials.gov.au/anzctr/trial/ACTRN12619000123145.

Identification of high risk and early stage eating disorders: first validation of a digital screening tool.

BACKGROUND: Eating disorders are amongst the deadliest of all mental disorders, however detection and early intervention rates remain extremely low. Current standardised screening questionnaires can be arduous or confronting and are ill-validated for online use, despite a universal shift to digital healthcare. The present study describes the development and pilot validation of a novel digital screening tool (the InsideOut Institute-Screener) for high risk and early stage eating disorders to drive early intervention and reduced morbidity. METHODS: We utilised a mixed cross-sectional and repeated measures longitudinal survey research design to assess symptom severity and recognised parameters of statistical validity. Participants were recruited through social media and traditional advertising, and through MTurk. An Eating Disorders Examination Questionnaire (EDE-Q) global score of 2.3 and assessment of eating disorder behaviours was used to determine probable ED. 1346 participants aged 14-74 (mean [SE] age 26.60 [11.14] years; 73.8% female, 22.6% male) completed the survey battery. 19% were randomised to two-week follow-up for reliability analysis. RESULTS: Strong positive correlations between the IOI-S and both the EDE-Q global (rs = .88) and SCOFF (rs = .75) total score were found, providing support for the concurrent validity of the scale. Inter-item correlations were moderate to strong (rs = .46-.73). Correlations between the IOI-S and two measures of social desirability diverged, providing support for the discriminant validity of the scale. The IOI-S demonstrated high internal consistency (α = .908, ω = .910) and excellent two-week test-retest reliability (.968, 95% CI 0.959-0.975; p ≤ 0.1). The IOI-S accurately distinguished probable eating disorders (sensitivity = 82.8%, specificity = 89.7% [AUC = .944], LR+ = 8.04, LR- = 0.19) and two stepped levels of risk. CONCLUSIONS AND RELEVANCE: The present study provides excellent initial support for the psychometric validity of the InsideOut Institute digital screening tool, which has the potential to streamline early intervention in the hopes of reducing current high morbidity and mortality. Further validation should be undertaken in known clinical populations. Eating disorders are amongst the deadliest of all mental disorders, however detection and early intervention rates remain extremely low. The present study describes the initial psychometric validation of a novel digital screening tool (the InsideOut Institute Screener) for high risk and early stage eating disorders, for self-referral and/or use in primary care. 1346 participants aged 14-74 of all genders completed a survey battery designed to assess common parameters of statistical validity. Strong support was found for the screener's ability to accurately measure eating disorder risk and symptomatology. The screener was highly positively correlated with a well known and extensively validated long form self-report questionnaire for eating disorder symptomatology. This study is a pilot validation and the genesis of a project that aims ultimately to drive early intervention leading to reduced morbidity and mortality rates in this illness group.