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"Do Carers Care About Research?

"Do Carers Care About Research?. HOW EVIDENCE AND EVIDENCE-BASED CLINICAL GUIDELINES HELP CAREGIVERS SUPPORT TREATMENT. Laura (Collins) Lyster-Mensh, Executive Director F.E.A.S.T. Information UNDERSTANDING Support for Treatment.

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"Do Carers Care About Research?

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  1. "Do Carers Care About Research? HOW EVIDENCE AND EVIDENCE-BASED CLINICAL GUIDELINES HELP CAREGIVERS SUPPORT TREATMENT Laura (Collins) Lyster-Mensh, Executive Director F.E.A.S.T.

  2. Information UNDERSTANDING Support for Treatment L. Collins, AED's ICED Salzburg, June 2010

  3. "Evidence-based medicine is the conscientious, explicit and judicious use of current best evidence in making decisions about the care of individual patients.“ Centre for Evidence-Based Medicine L. Collins, AED's ICED Salzburg, June 2010

  4. U.S. Preventive Services Task Force : • Level I: Evidence obtained from at least one properly designed randomized controlled trial. • Level II-1: Evidence obtained from well-designed controlled trials without randomization. • Level II-2: Evidence obtained from well-designed cohort or case-control analytic studies, preferably from more than one center or research group. • Level II-3: Evidence obtained from multiple time series with or without the intervention. Dramatic results in uncontrolled trials might also be regarded as this type of evidence. • Level III: Opinions of respected authorities, based on clinical experience, descriptive studies, or reports of expert committees. “literature on the treatment of AN in particular was deficient” “has not yet been addressed empirically” “a substantial gap in the literature” “sparse and inconclusive” “interventions were graded as weak to nonexistent” “no studies of EDNOS outcomes exist” “lack of follow-up data” L. Collins, AED's ICED Salzburg, June 2010

  5. Need to know Know L. Collins, AED's ICED Salzburg, June 2010

  6. Need to know Think we know Know L. Collins, AED's ICED Salzburg, June 2010

  7. Evidence is not always being seen, heard, or shared with parents and caregivers. L. Collins, AED's ICED Salzburg, June 2010

  8. Evidence is not being used • Guideline updates slow • Politics • Lines between disciplines and generations • Healthcare system structure • Mistrust of evidence-based practice • Professional courtesy L. Collins, AED's ICED Salzburg, June 2010

  9. We trust you. L. Collins, AED's ICED Salzburg, June 2010

  10. Hope • Parents respond well • Better outcomes • Less splitting • Common standards • Helps non ED specialists on team to stay on message • Parents can behave authoritatively L. Collins, AED's ICED Salzburg, June 2010

  11. What works? L. Collins, AED's ICED Salzburg, June 2010

  12. The 1945 Minnesota starvation study L. Collins, AED's ICED Salzburg, June 2010

  13. Animal Studies L. Collins, AED's ICED Salzburg, June 2010

  14. Autoimmune disease Pediatric development Eating disorders literature Gastroenterology stroke epilepsy Bipolar autism Non-psychiatric malnutrition schizophrenia neuroscience L. Collins, AED's ICED Salzburg, June 2010

  15. Eating disorders literature L. Collins, AED's ICED Salzburg, June 2010

  16. “It isn’t my fault? “Of course it is my fault.” L. Collins, AED's ICED Salzburg, June 2010

  17. Relate cause to treatment L. Collins, AED's ICED Salzburg, June 2010

  18. “Wait – what does ‘evidence-based’ mean?” differential diagnosis “Ideal” body weight? DSM? Refer? CO-MORBID Present? L. Collins, AED's ICED Salzburg, June 2010

  19. Research trials Protocols Clinical Guidelines L. Collins, AED's ICED Salzburg, June 2010

  20. Gather and respect family members as authorities on the person, if not the illness. L. Collins, AED's ICED Salzburg, June 2010

  21. Strengths rather than weaknesses L. Collins, AED's ICED Salzburg, June 2010

  22. Know the Internet L. Collins, AED's ICED Salzburg, June 2010

  23. Your stories are data, too. L. Collins, AED's ICED Salzburg, June 2010

  24. What doesn’t work? L. Collins, AED's ICED Salzburg, June 2010

  25. We don’t want to do your job, but we need your information to do ours. L. Collins, AED's ICED Salzburg, June 2010

  26. What works? Optimism. L. Collins, AED's ICED Salzburg, June 2010

  27. LAURA COLLINS LYSTER-MENSH EXECUTIVE DIRECTOR F.E.A.S.T. FAMILIES EMPOWERED AND SUPPORTING TREATMENT OF EATING DISORDERS FEAST-ED.ORG LAURA@FEAST-ED.ORG (540) 227-8518 LAURA.COLLINS.EWYA (SKYPE) P.O. BOX 331, WARRENTON VA 20188 US

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