treatment plenary: About the “Evidence” in Evidence-Based Practice – Are We Missing Something? #ICED2020

plenary will look at how well we're doing at integrating the 3 legs of the "evidence based" stool (research, clinical & lived experience) #ICED2020

presenters: Stuart Murray, Laura Collins Lyster-Mensh & Josie Gellar #ICED2020

First talk from Stuart Murray on the evidence base for AN #ICED2020

huge increase in how often "evidence-based treatment" comes up in searches around AN; Murray notes that evidence-based practice is not the same as evidence-based treatment & people think about it differently #ICED2020

"Evidence-based treatment" tends to mean "adherence to protocols" for tx evaluated in strong clinical trials that are "relatively free of bias" - Murray #ICED2020

[spoiler alert for the workshop I'm giving with colleagues next week -- it's impossible to be free of bias IMO ;) ]

Meta-analysis looking @ randomized controlled trials -- 2 data collection pts, ideally a follow up too, reporting of psychological + weight outcomes c/o outcome is not only wt. Often these are conflated into one outcome dfn. - Murray #ICED2020

35 RCTs, over 2500 pts; differential effect that favours specialized treatments -- but not at follow up -- for weight; little difference in psychological symptoms - Murray #ICED2020

the reasons why adolescents tend to do better in specialized tx may not have to do with specialized treatment as much as it has to do with prognosis (i.e., importance of early intervention) - Murray #ICED2020

there isn't one single treatment that seems to be the best - Murray [and that's just tx for AN, studies include those who've had access to tx which is not nearly everyone with an ED...] #ICED2020

why are we surprised that studies have a high risk of bias? It's quite interesting to hear Murray's talk -- missing data, lack of follow up, etc. seem fairly common, which begs the question: why do we continue to hold up clinical RCTs as holy grail? #ICED2020

sources of methodological bias: deviation from protocol (e.g. secondary outcomes promoted to primary)--> people not stating protocols, hypotheses & primary outcome measures up front --> methods selected can have a major impact on what is found. - Murray #ICED2020

sources of methodological bias: non-reporting, non-publication of results. negative results --> locked away. Skews the evidence base. - Murray #ICED2020

of 99 studies, only 41 were published. Of the 41, only 8 showed evidence of prospectively registering, and 7 replicated. - Murray #ICED2020

so, where do we go from here? Murray suggests we need to remember that some tx is better than none [though, I do wonder about the harm that tx can lead to in some cases. agree that people need & deserve help ofc.] #ICED2020

need to be cautious with term "evidence based treatment" because it implies it WILL WORK for sure. We may be raising pt expectations too much, need to be humble about where we are & where we have to go. - Murray #ICED2020

Next speaker is @LauraCollinsLM, "the alternative to evidence-based treatment is myth-based treatment" #ICED2020

Laura "has become the poster parent for FBT" -- but notes that FBT is hard, impractical, undermined by others, not tx that always helps & can hurt; the best chance @LauraCollinsLM child had to survive #ICED2020

at the time @LauraCollinsLM looked for evidence for treatment, many providers she encountered were unable to tell her about the evidence base surrounding their tx delivery #ICED2020

much of tx is not based on evidence; @LauraCollinsLM refers to this as "myth-based treatment" & asks for more. #ICED2020

I'm having a LOT of thoughts & feels. This conversation is complex, nuanced & relies on particularized ideas about what is "good evidence" & how that is gathered. It's interesting to listen to these talks together & consider tx as it happens and is studied #ICED2020

I don't believe it's simply a matter of replication, though I do value transparency; building a truly strong evidence base also means bringing in those who may not presently get any tx into the equation, otherwise we're only getting evidence for one particular group #ICED2020

It could/should be possible to construct evidence bases that are complex & nuanced against the richness of people's lives, but this requires time & commitment to more than just racing for a singular best way of doing things #ICED2020

I agree with @LauraCollinsLM that fear undergirds the fixity within the ED field/unwillingness to change -- perhaps also pride & desire for expertise #ICED2020

whoops I missed a speaker in my initial tweet -- now Chris Basten on "Evidence for the Therapeutic Relationship in Treating Eating Disorders" #ICED2020

important stuff, though I have to briefly pause on my live-tweeting to get my lunch, hah

surprised that early therapeutic alliance not always predictive of outcome; early changes in wt. & behaviour have been shown to be more predictive in some studies - Basten #ICED2020

Zaitsoff et al. 2015 systematic review (29 studies) found moderate impact -- relevance of when measured, different tx modes - Basten #ICED2020

quite interesting that TA appears to be less influential in behavioural style tx. puzzling out in my mind why that might be. #ICED2020

Josie Gellar bringing it together & discussing the call to action #ICED2020

something I think is really important, when we look at the "third leg" of the evidence based stool, lived experience, is that "lived experience" is far from singular. #ICED2020

there is a need to listen to people w/ EDs & supporters, provide clear & useful messaging about evidence-based tx - Gellar #ICED2020

some people "liked" the question I asked which feels validating... love the dopamine hit of likes, this feels like social media #ICED2020

we (ED researchers, clinicians, ppl w lived exp) don't always agree -- so who do we listen to? - Gellar #ICED2020

across 3 kinds of tx, Gellar found common ground amongst approaches in terms of engagement, behavioural expectations & skills #ICED2020

emerging area of study: collaborative empiricism, socratic questioning -- curiosity & desire for understanding, use what you find to work toward change - Gellar #ICED2020

"there is a universal discrepancy between what we believe is helpful and what we do" in terms of collaboration -- we think we want to be collaborative, but it doesn't tend to happen - Gellar #ICED2020

I suspect this is due to a few things, among them: no training on how to actualize this, hierarchies of power and knowledge, even patients' & families' prior experiences which train them into a more passive role... #ICED2020

in ED service Gellar works in, there is a patient & family advisory committee -- helpful for getting insight into perspectives from those who've been through it #ICED2020

alright let's get some Qs A'd! #ICED2020

first Q: how can we call the evidence evidence when we tend to miss vast swaths of people in them (e.g. missing "atypical" AN)? Gellar: yes, we can't make conclusions about people we don't study; a call to action to be more inclusive in clinical trials #ICED2020

Q2: how do we orient around the priorities of the 3 legs of EBP? Gellar notes patient advisory committee has only come in the past 8 years & it has completely changed the service; also need to attend to the research & clinical expertise #ICED2020

side note: we say "the evidence" as though a) it's one thing and b) it's static. it's... neither? #ICED2020

I don't think listening to patients' preferences means aligning with things that aren't in their best interests. being truly collaborative means taking the time to work with them on what would work for them & making decisions transparently #ICED2020