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

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

L. Collins, AED's ICED Salzburg, June 2010 "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 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. “a substantial gap in the literature” “lack of follow-up data” “has not yet been addressed empirically” “literature on the treatment of AN in particular was deficient” “no studies of EDNOS outcomes exist” “interventions were graded as weak to nonexistent” “sparse and inconclusive”

L. Collins, AED's ICED Salzburg, June 2010

Evidence is not always being seen, heard, or shared with parents and caregivers.

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

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

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

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

L. Collins, AED's ICED Salzburg, June 2010

“It isn’t my fault? “Of course it is my fault.”

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

L. Collins, AED's ICED Salzburg, June 2010 “Wait – what does ‘evidence-based’ mean?”

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

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

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

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

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

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

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

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

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