We are the Association for Child and Adolescent Mental Health, or ACAMH for short. And this is ACAMH Learn. Hi, my name is Amelia Austin, and I'm a postdoctoral researcher at the University of Calgary. Today, I'm going to be talking a little bit about ICHOM and their patient-centred outcome measure set for eating disorders. I'll just briefly talk a little bit about the aim of the project and introduce you to the team and touch on the methods just very briefly. And then I'll go into the results, which is the main piece of this. And then touch on just some ways that we may want to move forward in the future. So just in terms of the aims of the set, ICHOM really wanted to look at a minimum set that just included outcomes that mattered most to the people living with eating disorders. They wanted individuals with lived experience, both for themselves and as caregivers to be directly involved in defining the set. And they also really wanted defined time points and specific tools that are clearly defined to ensure that this data can be comparable across different settings, hospitals, countries, things like that. And so the intention was not to create new outcome measurements or questionnaires, but really, to look at what's already out there and build consensus on what's working the best and how we all want to measure these things together. So in terms of the team, this is the project team that really just kept everything chugging along. It included representatives from ICHOM and myself, and then also our two fearless leaders, Dr. Christine Peat. Who's a clinical psychologist at the University of North Carolina, and Dr. Tracy Richmond, who's a paediatrician at Harvard Medical School and Boston Children's Hospital. In terms of our wider working group, so these are the voting members of the group when we're building consensus, it was an international crew and included a range of researchers, clinicians, and individuals with lived experience, both for themselves or as a caregiver. The creation of the set was also sponsored by NHS England and NHS Improvement, and also NEDA in the US, the National Eating Disorders Association. And very briefly, the methodology. There were lots of international video calls, and these are represented by the green squares along the top. And there were multiple iterative rounds of voting as well, just to build that consensus. Throughout the project, we also brought in evidence from various sources. So the grey there represents when we looked at the literature for different input. And we also had input from people with lived experience, both those within the working group, but also external to it. And we also had external input from professionals in the eating disorder field for an open review period. And that's represented by the orange there. In terms of the results, which is my favourite piece, for the scope, the eating disorder set can be used for individuals with binge eating disorder, bulimia nervosa, anorexia nervosa, OSFED or ARFID, and it's best suited for patients and families, where the person with the eating disorder is six years or older. But it's suitable for all treatment settings, regardless of intensity or the therapeutic modality being used. So overall, the working group settled on five outcome domains. The first was physical health or clinical outcomes, and they included survival. This is an outcome that ICHOM likes to include across their different sets, regardless of disease or disorder. The working group also included eating disorder behaviours or cognitions, including outcomes, like dietary restriction, binge eating, compensatory behaviours, body image symptom severity, and two specific outcomes that really related to the ARFID diagnosis, which was a low interest in food and fear of aversive consequences of eating. The working group also included a domain called other psychological symptoms, and this included things like depression, anxiety, and suicidal ideation. They included a quality of life domain, both a general quality of life, but also an eating disorder specific quality of life, and finally, a social functioning domain. And within this, they included things like the ability to engage in work in school and also healthy interpersonal relationships. And so a lot of people working in eating disorders might be thinking, I didn't see weight on that list. And while almost everyone in our working group recognised how important weight or BMI or related variable that can be for many people with eating disorders when it comes to recovery. There were a few blocks that didn't allow us to reach consensus in our group. And the first was the historical, almost a little bit laser focus on weight that sometimes we've seen in eating disorder outcome measurement. The other is some concern about how weight data would be used across all the different disorders. So specifically, how would that weight data be used when it came to diagnoses that aren't necessarily associated with a low weight. So things like bulimia nervosa or binge eating disorder. How would that weight data be reflected in terms of what's perceived as a healthy outcome? And so ultimately, the group didn't reach consensus, but they did determine that this is something that should be revisited and also acknowledged that weight gain can be a really important part of recovery for a lot of individuals. So coming back now to the tools that the group ended up building consensus on, when it came to eating disorder symptoms for children, they recommended the children's eating attitude test or the cheat, and for adolescents and adults, recommended the eating disorder examination questionnaire. If the eating disorder has more of an ARFID type presentation, for children, they recommended the eating disorder in youth questionnaire. And for adolescents and adults, recommended the nine-item ARFID screener. When it came to other psychological symptoms, so again, these are things like anxiety or depression, for children, they recommended the RCADS-25. And this is actually the measure used in the ICHOM set for children with anxiety and depression in the ICHOM set. And for adolescents and adults, they recommended the PHQ-2 and GAD-2. If you work in a setting, where there's a little bit more time and you have the resources, this could be extended to the PHQ-9 or the GAD-7. In terms of quality of life and social functioning and for children, the group recommended that KIDSCREEN-10 and for adults recommended the Clinical Impairment Assessment or CIA and the WHODAS 2.0.12 for more of a general overview of functioning. So of course, not everyone has to answer every questionnaire. It would be specific to the age of the individual and also the diagnosis that they receive. So for an example of an adult patient with anorexia or bulimia or binge eating disorder, eating disorder symptoms could be measured using the eating disorder examination questionnaire. Quality of life and functioning could be measured using the CIA and the WHODAS 2.0.12, and other psychological symptoms can be measured using the PHQ-2 and the GAD-2. And so the questionnaires are really suited to the individual. Finally, we had to look at case mix variables. And these are variables that might have an impact on outcome. Things like demographics or baseline health status, they're really important things to consider if you want to examine data across different settings, different hospitals, different countries, things like that. And what the group decided is they really wanted to capture demographic variables. These are things like sex, gender identity, if it's safe to ask, work or education status, clinical variables, things like the type of treatment level of care and diagnosis that they received. And also some historical variables. Thinking about things like age of onset, comorbidities, physical and mental health comorbidities, and also previous treatment attempts. And very last, the group wanted to establish some time points, again, , to increase that consistency when comparing data across different settings. So baseline is a great time to measure everything, of course. But also, looking at those outcomes at three months into treatment, as well as six months and then moving to a six month schedule after that. Things can be a little bit shifted if the patient is in a really intensive treatment setting. So things like inpatient or residential care can move to more of a two-week measurement schedule or whenever they're discharged, whichever comes first. And so the eating disorder set can be found in our publication in Lancet Psychiatry. But also, further details can be found on the ICHOM website. So moving forward, we're starting to see a lot more evidence when it comes to shorter forms of eating disorder symptom measurement. These questionnaires are getting a lot more evidence. We're also seeing a lot more publication around eating disorder measurements for children. And there's always been measurements and questionnaires for children. But they just haven't necessarily been widely translated or that evidence hasn't been published. So we're seeing that a lot more now, which is great. We also don't necessarily know what this measurement schedule looks like in practise. So we need people to trial it out and share their findings with us. If you have any questions on the eating disorder set, you can, of course, get in touch with ICHOM, or you're also welcome to email me at the email provided. Thank you.