Leading questions and Heisenberg's Observer Effect

I got an upset phone call recently from a parent whose very young daughter was given a survey to fill out six months after treatment. The mom, whose family had been fully included in treatment and whose daughter was doing well, was happy to comply: thinking the tone and content would be aligned with the treatment. But after giving permission, and while watching her daughter fill it out, the mom was alarmed by the content of the questions. I recognize the questions as being from the EDE-Q, a very common questionnaire used to assess a patient's psychological eating disorder symptoms. Among the questions:

On how many of the past 28 days...
2. Have you gone for long periods of time (8 waking hours or more) without eating anything in order to influence your shape or weight?
3. Have you tried to exclude from your diet any food that you like in order to influence your shape or weight (whether or not you have succeeded)?
5. Have you had a definite desire to have an empty stomach with aim of influencing your shape or weight?
6. Have you had a definite desire to have a totally flat stomach?
11. Have you felt fat?
16. Over the past 28 days, how many times have you made yourself sick (vomit) as a means of controlling your shape or weight?
17. Over the past 28 days, how many times have you taken laxatives as a means of controlling your shape or weight?
22. Has your weight influenced how you think about (judge)yourself as a person?
23. Has your shape influenced how you think about (judge) yourself as a person?

The mother's concern about how a young adolescent might interpret these questions are ones I discussed in my book and have continued to worry about. I’ve heard this concern from other families as well over the years. For some young people these questions are the first time they'll learn that people go for long periods without eating, use laxatives or exercise to purge calories. It is a validation of the idea that associating weight with social judgment has to do with these symptoms and why their frightened parents are bringing them to the clinic. The barrage of pointed questions on these topics sends a lot of messages. Being an egosyntonic brain state, as well as one with ascetic moral values there is also the certainty that some patients look at these questions as a measure of just how well they are performing their goals in reducing weight. There is a context to the questioning, and implied judgments and of course the person answering the questions has some sense that parents and clinicians may respond to the "wrong" answers.

I went to some friends in the business to ask their thoughts and they helpfully divided the issues into two parts - all acknowledging that this is an issue that they've considered before. One said of the EDE-Q in particular: "I have also been concerned about the wording in it since 1999 when I was first introduced." another asked: "I am not sure how you identify risk if you don't ask the questions."

Here are the concerns:
"1. skewing results using leading questions
2. inserting dangerous ideas into children's heads."

On number one, all three friends said that in practice they do adapt the questions to the situation. For example, one said "For instance, I never ask a young child "do you vomit?"--it's too scary and pejorative sounding. I ask "have you ever been so upset by what you have eaten that it comes back up?" All three said they think age-appropriateness needs to be part of cliical judgement, as well as the patient's background.

On number two the responses of the three clinicians were different than from parents.

One therapist said "I guess I am of two minds about this. Certainly and most importantly, none of us would want to do harm. I do wonder that if a questionnaire item alone were to upset a child or give the child ideas, then that is a very high risk child and should be identified ASAP."

One was particularly sharp: "it never ceases to amaze me that parents who will let their kids watch CSI will worry about their child "catching" behavior or "imitating behavior" from a discussion of eating disordered behavior--in any setting."

For what it is worth, I do worry about how information is gathered. I think the content of most eating disorder questionaires does have an observer effect, and the more so when the child is young or the patient has not been exposed to a lot of messages about eating disorders - especially the older theories. The kids getting these questions are indeed the ones at high risk - that's why they are being asked.

While you can't catch an eating disorder because of suggestion you can be exposed to behaviors - like dieting and purging - that are particularly attractive outlets for someone who is predisposed.

And I think that no matter how well-validated the measure is, it will have to change as treatment changes over time. I know that messes with the numbers. But if it affects the prognosis of the patient then: tough.

Here's my experience with this. Years ago my family showed up at a major university-based eating disorder clinic for a full-day evaluation. Our home team wasn't making progress and we were scared. As we were waiting for our appointment we were handed clipboards, my daughter and I, and asked if we would participate in a study. Being a science supporter and not knowing better - and of course trying to be a good patient's mother - I said yes. It was the EDE-Q or something quite similar. Knowing what I know now, I would say no. I'm big on research, but the data that mattered at that point was my daughter's recovery - and I can't be confident that those questions have no effect. I'd be interested in more thoughts on this.


  1. I know for me, even at my age (35) these sorts of things do have an influence on my behaviour. CSI wouldn't cause me imitate behaviours because no part of my brain wants to be hurting anyone. But I guess part of me (and the loud part at the moment) is wanting to control my weight. So whether I want it to affect me or not, reading questions like that would influence how good I feel about myself, and would influence my actions. It would not only put ideas into my head, but it would also affect whether or not I thought I was being 'good enough'. My gp has even put ideas into my head without meaning to by finishing my sentences for me when I hesistate. It doesn't take much to introduce a 'good' idea to my repertoire of disordered behaviours. So I think it would be even more so for a young child.

  2. I agree with you, but we need some way of measuring ED psychopathology.

    I have taken some of these tests and some of these questions I don't remember seeing. I remember seeing a lot of related body image questions. . .

    I do think they are leading quesitons but the ED patients are often very hesistant to explain their symptoms -- especially those which are shameful. At the pediatric program (Toronto HSC) I attended (both IP and OP) they made a habit of asking about laxative abuse, diruetic abuse, diet pill abuse, etc. at each outpatient visit. I read an article by Dr. Debra Katzman (current president of the AED I think and medical director of the HSC program) and I think her rationale was that if you don't ask these questions, your patients will not tell you. How can you get around it? Most professionals ARE very careful not to trigger patients, but sometimes this cannot be avoided. . . Some patients may not even see symptoms like exercising or laxative abuse, etc. as problematic depending on their mindset. . . It is important to ask/determine and this can't always be done by an open questionnaire. . .

    Most individuals know about bingeing, purging, laxative abuse, direutic abuse and restricting/over exercise as ED behaviours -- But obviously young children will be impressionable. . .

    I think it is one of those rock and hard place situations.

    By the way Laura, do you have an email you can be contacted at? I have a question that I would like to ask you.


  3. While I think that dependent on the mindset of the patient at the time of the survey, the questions may introduce thoughts of not being "good enough" presently at their ED behaviours or may invite them to compare the reality of their answers with what is actually going on, that is a separate issue from introducing a child to ED behaviours. Unless the child is VERY young, asking questions of this nature likely wouldn't introduce anything that they didn't already know was, to some extent, a form of weight control. The typical eating disorder patient is fairly intellectually curious and most are bound to have done some reading on the internet, library, or in their parents help books that alert them to the existence of these weight loss mechanisms. The surveys may reinforce thoughts at particular points in treatment, but the idea of them introducing the mechanisms for the first time is highly unlikely. I believe your friend who asked how risk could be measured without asking questions is right. Just as asking someone whether they're considering suicide is not dangerous by inserting the idea in their head and is helpful because it probes at at-risk behaviours, so too are questions on usage of various eating disordered behaviours.

  4. I should clarify - we absolutely need diagnostic tools and to get the information needed. The question is how, when, and how often. Especially with children, and especially in light of newer views of the illness.

    A, my email is Laura@eatingwithyouranorexic.com

  5. The main problem I (personally) have with EDE-Q is that it was totally insensitive for diagnosing my AN or assessing the severity of my AN. The questions are biased towards weight and shape.... Utterly useless for someone with non-fat-phobic AN who over-exercises and under-eats to control general anxiety and/or to obtain a sense of control or order in their life.

    I did EDE-Q at a BMI of 13 and didn't even score in the anorexic range!

    As for putting ideas into my head... I never needed a set of 'rules' of 'how to become anorexic', or 'how to worsen my AN'. My anorexic 'rules' originally developed in my own mind without prompting from anyone or anything else. I had enough turmoil in my head for the behaviours to arise purely of their own accord. I didn't know anyone else who had AN (hence no-one to learn from) and because I developed AN in the 1970s there was no internet.

    Now, what I write above applies to me. I do know of a number of girls/young women who have developed 'extra' anorexic behaviours through picking these up in EDUs or online through (e.g.) 'pro-anorexia' websites.

  6. I think you can add one more concern to your list, Laura:

    3. Influencing a professional's viewpoint and thus skewing treatment.

    (Oh--are anorexics supposed to be obsessing about their weight? Looks like it from this list of questions, so it must be so.)

    When someone makes up a list, they bring their own personal filter to the questions selected. Even a committee of people has a viewpoint. The questions selected themselves influence any professional who uses the screening test.

    Case in point: as Cathy says, non-fat-phobic anorexics. My best friend in college also didn't obsess about her weight and shape--in fact, she knew she was too thin but felt her biggest problem was depression. Does the therapist then assume they aren't anorexic because they don't answer the (slanted) questions correctly? Does she treat her clients differently, perhaps ineffectively then, because she doesn't insist on full nutrtion and weight restoration?

    Another example: So much emphasis is placed on anxiety, OCD or depression as a co-morbid or worse, pre-existing condition.

    At our first (intake) session, the therapist turned to us, the parents, and asked the questions she expected to get the 'right' answers to: "When she was little, did your daughter ever exhibit any OCD behavior?" No. "Had to have her dolls lined up a certain way on her bed?" No. "Engaged in rituals like not stepping on cracks or having to do certain things before bed or meals?" No. "Fallen apart over a poor grade at school?" No. "A perfectionist?" No. "Rigid in her thinking and difficulty set-shifting?" No. "Emotionally brittle? Challenged by change?" No. "Depressed? Unable to fit in socially? Awkward in peer groups?" No, no and no. Finally in frustration at our stubbornness, she smiled smugly and said, "It's in there. I'll find it."

    She then proceeded to spend many sessions 'mining for pathologies', as I called it. By the end of her treatment, my d was fairly convinced that she WAS perfectionistic and OCD, even though she only was while she was actively starving. Oh, the power of suggestion!! Thanks to the 'common wisdom' that tests such as the EDE-Q engender in therapists and other professionals.


  7. I use to belong to various pro-ana sites. You know what we would do? We would write short stories based of these types of questionnaires and post them online!

    A common concern among the users was the need to know how to answer these kind of questions and how to respond
    without hesitating. (We had entire threads dedicated to these questionnaires and doctor visits)

    Fast forward 6-7 years.

    I attend counseling at my university for my Ed. Before each session, I am handed a laptop and I have to answer a questionnaire. (The questions are the same all the time.)

    The first time I answered the questions, I was literally laughing out loud. I knew the "right" answers.

    I even knew that I should start the first couple of sessions by answering less "right" answers. Then, toward the final sessions, I started answering with more "right" responses so that the counselor would think that she did an awesome job.

    After all these years, the questions and the material don't trigger me. I could see how it would be an issue for younger patients.

  8. Interesting that the therapist asked Colleen the following:

    "At our first (intake) session, the therapist turned to us, the parents, and asked the questions she expected to get the 'right' answers to: "When she was little, did your daughter ever exhibit any OCD behavior?" No. "Had to have her dolls lined up a certain way on her bed?" No. "Engaged in rituals like not stepping on cracks or having to do certain things before bed or meals?" No. "Fallen apart over a poor grade at school?" No. "A perfectionist?" No. "Rigid in her thinking and difficulty set-shifting?" No. "Emotionally brittle? Challenged by change?" No. "Depressed? Unable to fit in socially? Awkward in peer groups?"

    I actually wish that my parents had been asked these questions when I was in my teens. They would have gone much further to diagnosing my Asperger's... and perhaps then the clinicians would have recognised the link between AN and autism in SOME (not all) kids.

    Apparently EDE-Q is the 'gold-standard' questionnaire used in many EDUs in the UK to assess response to treatment and acceptance of weight gain. It simply doesn't catch the psychopathology of some people's ED.

  9. I just KNEW this would be a good topic to discuss. Great insights and observations, all!!

  10. It IS a good discussion point Laura... Another thing that I would be interested to hear a debate around is the following question:

    If there was not so much emphasis on the theory that the psychopathology of Eating Disorders, and especially Anorexia Nervosa, develop as a consequence of body dissatisfaction or 'body image' disturbance, would we even attribute the behaviours of an individual with Anorexia Nervosa to a disorder of body image?

    The reason I ask this (and would be interested to hear others' responses, is that I wonder whether any child who develops AN really understands why? I didn't know why I felt compelled to restrict food and over-exercise in a very rigid manner as an 11 year old. Interestingly no-one suggested body dissatisfaction to me or body image disturbance when I was an anorexic child. It was not until I was in my late 20s that anyone ever suggested that I had AN because I didn't like my body. To me, AN was just another obsessive-compulsive behaviour, like my previous OCD behaviours.

    So the main question is:

    Do clinicians, the media etc. put an idea into a child's mind (who aleady has AN) that their AN is a disorder of 'body image' - such that they believe this to be true?

    How would you feel about raising this as a new discussion point?

  11. this is a fascinating topic, Laura. Thank you for posting. I agree with you 100 percent on this. I think they need to (especially for young children!) find another way of asking / gathering information about eating disorder symptoms because from my personal experience i sure as hell know that these leading questions can be damaging to an already sensitive psyche/ self-esteem, and can DEFINITElY influence the onset of new dangerous behaviors.

  12. a reader sent this by email:

    "Laura, I wanted to add something to my comment on your post about the questionaire questions - and didn't think I should post it publicly, but thought it might be valuable in answering your musing on whether the questions have an effect. I realised this evening that the wording of two of these questions have stuck with me:

    2. Have you gone for long periods of time (8 waking hours or more) without eating anything in order to influence your shape or weight?
    8 hours - now I have a minimum amount of time I need to go without eating to be 'good enough'

    5. Have you had a definite desire to have an empty stomach with aim of influencing your shape or weight?
    empty stomach - my new mantra ' must have an empty stomach'

    And I've been through this all before as a teenager (although I had no idea that what I was doing was disordered at the time) and now that I'm going through it again I have a much greater insight into what is happening to me. I'm only mentioning this to highlight that if someone of my age and maturity can be influenced by simple words in a questionaire it is impossible (to me) to think that they would not influence a child who is less aware of what is happening to her and who may be less inclined to want to give it up voluntarily."

  13. Cathy, it was fine for our daughter's therapist to ask these questions of us--entirely appropriate screening questions, in my mind.

    What was NOT appropriate was her response: that she would FIND the OCD, depression, anxiety that we, her parents, were in denial about!!

    Sorry, but that is very poor therapy. It's therapeutic bias at its most blatant. Why ask the questions if you aren't going to listen to the answer? It affected how she treated us as parents and how she treated our daughter, who really is NOT anxious, OCD or depressed. IMHO, it made her therapy less effective and even harmful.

    If she had used her questions as true screening questions, she would have treated my d (and us) very differently (I hope). If your therapist had asked YOUR parents these questions, she might have tailored YOUR therapy to be more effective for you.

    Therapy should not come in a one-size-fits-all box!

  14. Colleen, I love your statement "therapy should not come in a one-size-fits-all box"!

    Therapy (IMO) is vital, but therapists shouldn't try to fit a person to a hypothetical psychological model.

    Your therapist was right to ask those questions, because some people with AN do have those characteristics pre-AN, but some do not. A good therapist should remain open-minded about their clients' characteristics.

    As for my parents... when I was diagnosed with AN at age 12 I had no therapist. No-one asked me how I was feeling about myself, the world, life etc. (which was actually very badly...). That is why I always maintain that the most important aspect of my recovery has been therapy.

  15. Cathy, you suffered for years without successful intervention on either count: full weight restoration or therapy. That is what I want to prevent.

    Therapy is important, but without a fully nourished brain to do it, a hole in the bucket is unaddressed.

  16. Laura, I agree... I never dispute the essential role of nutrition, but the point I continuously try to make is that for some people full nutrition is not enough on its own.

    Some people starve themselves, over-exercise etc. because they are struggling with life. As a teen and young adult, if someone had agreed to help me with the issues that underpinned my AN, I would have been more willing to eat, but they didn't.

    The 'difference that made the difference' was that I was promised therapy to help me eat, to continue eating and to help me cope with life without 'using' AN. Hence the importance of therapy. The clinician who really helped me provided therapy throughout the re-feeding process and continued therapy thereafter. And I do hope you print this comment because you didn't print one I left yesterday.

  17. Cathy, I print every one of your comments. I print ALL comments on this blog that are not spam!

    I don't understand why you keep saying that about therapy when no one argues with it. You seem to think that I or others disagree with it and I don't know anyone who does. We all think food is necessary but often not sufficient and that therapy is really important. The only option I find unacceptable is therapy WITHOUT weight restoration - or with insufficient restoration - or restoration that is not then continuously maintained.

    What can I do to reassure you on this - we seem to keep having the same back and forth?

  18. I also wanted to add that treatment of EDs and mental health issues is quite different in the UK relative to the USA.

    We don't go in for therapy in a big way over here. Few kids or adults have therapists. If you have an ED that is severe enough to meet certain criteria then you get funding to go into a unit where the majority of treatment is re-feeding - and maybe some 'body image' work (useless in my case) and DBT.

    Not all kids have 'issues' underpinning their AN, but some do. For those that do, taking away their behaviours and re-feeding without therapy to help them cope with life without behaviours can lead to suicide.

    So I think that part of the reason why I 'argue' (and pleased don't see it as 'arguing') on your blog is that enough kids are offered therapy over here, because we're not a society of therapists - or least we're only just becoming one....

  19. I left you a response on this earlier Laura; not sure if it appeared in your spam?


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