What are your top three treatment issues?

Parents, I am looking for your thoughts. Dr. O'Toole at Kartini and I have been discussing this question and are both going to ask it on our blogs:

What is your list of the top three treatment issues?

Comments

  1. Laura - Could you clarify what you mean by this. I was going to respond with what the 3 most important things that made FBT work with our daughter but then I wasn't sure that's what you meant. What do you mean by "treatment issues?" Maybe you meant what 3 issues need addressing the most? Help me out here.

    Mary Jeane

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  2. That WAS silly of me. I mean issues about eating disorder treatment that the field needs to address.

    e.g.:
    What setting is best?
    How to choose providers.
    What role does weight restoration play?

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  3. I'm a psychologist, not a parent, but I'll comment anyway.

    It is difficult to narrow it down to just three, so here are my top five (in no particular order):

    1.) Determining an ACCURATE ideal body weight for each individual patient

    2.) Developing standardized treatment protocols

    3.) Dissimenating accurate, up-to-date information on the etiology of EDs and evidence-based treatment to therapists, dieticians, physicians, psychiatrists, patients, and their families

    4.) Effective treatment methods for children or adolescents for whom Maudsley is inappropriate (e.g., those with abusive parents), and for those families who try Maudsley but do not recover

    5.) Effective treatments for adults with AN (in particular, how to help them achieve and maintain IBW so that they can benefit from outpatient CBT or DBT)

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  4. 1. Concrete and CONSISTENT definitions ACROSS the field of partial remission, remission, recovery and relapse. . (behavioural, cognitive and social domains)

    2. Relapse prevention and the continuing of care in appropriate settings after weight restoration (residential facility + 30lbs in 2 months + no or inadequate aftercare is a ridiculous idea for a chronic and severe mental illness)

    3. More study of factors that aid in recovery (motivation, social contacts, interest outside of ED) -- this may help some adults that have chronic AN

    4. Recovery and relapse rates of LARGE and DIVERSE cohorts of ED individuals for PROLONGED periods of time(5, 10, 15 years)

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  5. I AGREE with Dr. Ravin's number four!
    I would love to hear about what is considered an appropriate and effective treatment method for an adolescent for whom Maudsley is inappropriate.
    I fall into this category- my parents are not abusive, but my family dynamic just does NOT ALLOW for Maudsley. I am 17 and suffer from BN and there is NO WAY in hell that Maudsley would ever every be effective (let alone instituted correctly) in my family.
    I'm curious (although I AM in recovery at the moment already, and doing well) what your RECOMMENDATION would be for this situation.

    Sorry this is probably way more than you wanted, and not really what you were looking for with this post, but it is something that always pops into my head when i read you blog, Laura, and so what time to ask but the present?
    Thanks!

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  6. Rose, CBT is the treatment of choice for adults with bulimia. There are only 2 treatment trials for adolescent bulimia. In the UK, FBT and CBT were compared and came out about even. In an American trial, FBT was compared to supportive individual psychotherapy. FBT out-performed individual treatment in that study. There is a study recruiting now at Stanford and the University of Chicago comparing CBT to FBT.

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  7. Rose,

    Great question!

    There is so little research AT ALL on treatment and the dropout rates for adults are so high we know so little.

    I think we should look at EDs like we do cancer: the longer it has to grow and spread the harder it is to eradicate. That means we need MORE help for patients if they've been ill longer but in reality we offer less because we let the patient (the illness) make treatment decisions and be in charge of compliance.

    The principles of the Maudsley approach are not less applicable to older patients, in my opinion. In fact they are even more important:

    Food is medicine for getting the person back to normal brain function.
    Not the patient's fault nor is it their family's fault.
    Create a full circle of support and leave ED no choices.
    After repairing the brain damage, figure out any other issues that need to be resolved (co-morbid illness, lack of emotional regulation skill, broken family and social relationships, normal development challenges, and re-joining life).

    If the family is incompetent or so thoroughly alienated by the disease process then another support system needs to be in place - professional, community, social, spiritual. No one should be facing this illness without a full circle of support and accountability!

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  8. I'm a parent who's been actively involved with our d's AN/BN age 12-19 recovery for 7 years, including MFT initially for 2 yrs, then other day and residential plans.Our 3 Q's are:
    1.co-morbidity: how to know in each case what issues like depression or severe anxiety are at play,and roles of meds and therapy?
    2.how to deal with manipulative behavior where d uses her illness as excuse to unfairly gain reward or avoid responsibility?
    3.as family how not to burn out:we 'forget'or deny the ED still lurking, or become too accepting after years and make too mnay accomodations?

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  9. Julie O'Toole10:04 AM, July 11, 2010

    Really excellent comments. Please keep them coming! Every shred of differing points of view helps us put together a meaningful whole.

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  10. another comment, sent by email:

    One of my top treatment concerns is the tendency of patients and parents to drop out of treatment and or discontinue doing what's been effective in promoting progress after there's forward movement. I'm a big advocate for spreading out appointments and decreasing frequency of sessions allowing generaliAtion of skills and progress to daily environment however find that the high experienced with early success and over confidence with disregard for warnings pertaining to relapse risks is a dangerous combination. I know that lack of insurance coverage and financial duress surrounding out of pocket payment of treatment are contributing factors as well as the desire for "things to go back to normal".

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  11. I'm guessing that that last commentator wasn't an NHS clinician! How about considering the provision and funding of long term support and care for as long as it takes to achieve full health, not just for as long as it takes to get out of immediate danger.

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  12. Can only think of one right now.

    The need to set a goal weight that is correct for the individual, not just based on some type of general chart. Then the need for everyone to get on board with it.

    An example: my D-now-18 is in the middle stages of recovery from AN (started at 14) and has gained sufficient weight that, according to charts, she is of "normal" weight. However, her ED thoughts are still very much present, and I believe she needs to gain a little more weight to move forward in recovery and help stifle the ED voice. She has always been in the middle percentile for height but a very high percentile for weight.

    She remains terrified of becoming "fat" but I seem to be the only person (FBT "overseer", regular therapist, physician, nutritionist) who believes that without another 8-10 pounds her recovery is shaky. Everyone else says -- 5'2" around 120 lbs. is fine.

    Unfortunately, I believe that some treatment issues (as above) are not solvable until we, as a society, can accept that it's about health, not about weight, rather than focus on "preventing obesity."

    Also, our pediatrician's office had/has small posters in several exam rooms that had two children -- one slightly rounder than the other -- with scary warnings about that one growing up to be an obese adult. I think they should be banned from doctors' offices! I used to cover them up with a paper towel any time my D and I were in a room with them.

    My best to you, Laura, and all the others who give me hope that, in the future, our children (and we) won't have to stumble through years of expensive treatment that is ineffective at best and harmful at worst.

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  13. 1) Parent Education, Support and treatment as a Team Player from Day 1
    2) Standardization of and Access to Treatment Protocols
    3) Information on effective early intervention and/or prevention for parents/educators/community members so treatment is not delayed

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  14. I might add more evidenced based training for primary care providers too because they are the first line of defense.

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  15. My top 3 issues:
    1. Why can't we give all new parents information about how to detect an eating disorder in its early stages, just as we give advice on how to handle other childhood and adolescent illnesses?
    2. How do we determine target weight and what are the psychological and medical benefits of full weight restoration, not merely weight restoration that takes the patient out of immediate medical danger?
    3. What factors cause patients to drop out of treatment before reaching full weight restoration, and how can dropout rates be reduced?

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