EATING DISORDERS PREVENTION, TREATMENT & MANAGEMENT: An Evidence Review. The National Eating Disorders Collaboration

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1 EATING DISORDERS PREVENTION, TREATMENT & MANAGEMENT: An Evidence Review The Ntionl Eting Disorders Collbortion

2 Prepred for the Commonwelth Deprtment of Helth nd Ageing Mrch 2010 The Ntionl Eting Disorders Collbortion Led by Supporting Austrlins with Eting Disorders

3 EATING DISORDERS PREVENTION, TREATMENT & MANAGEMENT: An Evidence Review

4 Acknowledgements Authors Dr Hunn Wtson Ms Renee Elphick Dr Crl Dreher Dr Ann Steele Dr Simon Wilksch The Butterfly Foundtion Ntionl Eting Disorders Collbortion Project; Princess Mrgret Hospitl for Children; Centre for Clinicl Interventions; The University of Western Austrli Princess Mrgret Hospitl for Children The Butterfly Foundtion Ntionl Eting Disorders Collbortion Project; Curtin University of Technology The Butterfly Foundtion Ntionl Eting Disorders Collbortion Project; Flinders University The Butterfly Foundtion Ntionl Eting Disorders Collbortion Project; Flinders University Ntionl Eting Disorders Collbortion Steering Committee Professor Susn Pxton Professor Trcey Wde Professor Phillip Hy Dr Slone Mdden Professor Stephen Touyz Associte Professor Michel Kohn Ms Belind Dlton Ms Kirsty Greenwood Ms Julie McCormck Ms Eline Pinter Ms Clire Vickery Ms Christine Morgn Associte Professor Susn Byrne Ms Rchel-Brbr My L Trobe University Flinders University University of Western Sydney The Children s Hospitl t Westmed, Sydney The University of Sydney The Children s Hospitl t Westmed, Sydney; The University of Sydney The Ok House Eting Disorders Foundtion of Victori Princess Mrgret Hospitl for Children Eting Disorders Outrech Service Queenslnd The Butterfly Foundtion The Butterfly Foundtion The University of Western Austrli; Centre for Clinicl Interventions Alfred Child nd Adolescent Mentl Helth Service Review Forum Membership Four Review Forums were estblished cross the topic res of Promotion nd Prevention; Identifiction nd Erly Intervention, Tretment Stndrds nd Strtegies, nd Consumers nd Crers to input to ctivities nd deliverbles of the Ntionl Eting Disorder Collbortion project. Review Forum members were invited to view nd provide feedbck on working drfts of this evidence review during the development process. The overll Review Forum membership comprised over 100 individuls from cross Austrli nd included individuls with lived experience of n Eting Disorder, fmily members, nd crers; helth nd llied professionls (including psychologists, dietitins, counsellors, generl prctitioners, phrmcists, peditricins, psychitrists, socil workers, occuptionl therpists, nurses); primry, secondry, nd tertiry eduction professionls; representtives from community-bsed Eting Disorder ssocitions, support groups, nd professionl or chritble incorported orgnistions (e.g., Eting Disorder, phrmceuticl, counselling, crer); reserchers; nd medi professionls. All individuls hd n interest in Eting Disorders nd were self-nominted or invited to prticipte following communiction bout the Ntionl Eting Disorders Collbortion Project. Specil Thnks To: Associte Professor Dvid Forbes Ms Trcey Buckley Ms Jne vn Der Meer Mr Jeremy Freemn Princess Mrgret Hospitl for Children; University of Western Austrli Bridges Assocition Incorported Princess Mrgret Hospitl for Children Centre for Eting nd Dieting Disorders 2010 This work is copyright. You my downlod, disply, print nd reproduce this mteril in unltered form only (retining this notice) for your personl, non-commercil use or use within your orgnistion. Aprt from ny use s permitted under the Copyright Act 1968, ll other rights re reserved. II NEDC: An Evidence Review

5 Tble of Contents Acknowledgements List of tbles Acronyms nd Abbrevitions II VIII VIII Executive Summry Promotion nd Prevention Identifiction nd Erly Intervention Tretment Stndrds nd Strtegies Consumers nd Crers Eting Disorders: The Wy Forwrd for Austrli X XI XII XIII XIII CHAPTER 1: BACKGROUND Overview 1 Body Imge 1 Disordered Eting 2 Eting Disorders 3 CHAPTER 2: METHODOLOGY Evidence Review 12 Key Review Questions 12 Level of Evidence Scheme 12 Criteri for Inclusion in the Evidence Review 13 Literture Serch Methodology 14 Dt Collection nd Anlysis 14 Selection of Studies 14 Qulity Assessment 14 Methodologicl Limittions 15 Annotted Bibliogrphy 16 Literture Serch Methodology 16 CHAPTER 3: FINDINGS I: PROMOTION AND PREVENTION Universl Prevention 18 Cognitive Behviourl Therpy 18 Medi Litercy 19 Multicomponent 20 Obesity Prevention 21 Psychoeduction 22 Self-Esteem Enhncement 22 NEDC: An Evidence Review III

6 Selective Prevention 23 Cognitive Behviourl Therpy 23 Cognitive Dissonnce 25 Medi Litercy 27 Multicomponent 29 Obesity Prevention 30 One-Shot 31 Perfectionism 33 Psychoeduction 34 Self-Esteem Enhncement 34 Summry of Reserch Findings 35 Universl Prevention Approches 36 Selective Prevention Approches 37 Key Issues 38 The Golden Rule of Eting Disorders Prevention: First, Do No Hrm 38 Promising Approches Less Redily Evluble with Controlled Tril Methodology 38 Integrtion nd Prtnership with the Obesity Sector nd Relted Sectors 39 Integrtion with Existing Mentl Helth Frmeworks 39 Reserch Gps nd Directions 40 CHAPTER 4: FINDINGS II: IDENTIFICATION AND EARLY INTERVENTION Bckground for Erly Identifiction 42 Full Syndrome 42 Prtil Syndromes 42 Brriers to Cre 43 Screening Tools 44 Trining Interventions 45 Erly Intervention 45 Indicted Prevention 45 Cognitive Behviourl Therpy 46 Cognitive Dissonnce 49 Helthy Weight Intervention 51 Medi Litercy 53 Mentl Helth Litercy 54 Multicomponent 55 One-Shot 55 Perfectionism 57 Psychoeduction 57 Yog nd Medittion 59 Summry of Reserch Findings 60 IV NEDC: An Evidence Review

7 Key Issues 61 Promising Approches Less Redily Evluble with Controlled Tril Methodology 61 Promising Approches Yet to be Evluted with Controlled Tril Methodology 63 Loclised, Contextulised Inititives re Underrepresented in Level I nd II Evidence 63 Reserch Gps nd Directions 64 CHAPTER 5: FINDINGS III: TREATMENT STANDARDS AND STRATEGIES Anorexi Nervos in Young People 66 Ego-Oriented Individul Therpy 66 Fmily-Bsed Tretment (Mudsley Therpy) 66 Inptient Psychitric Tretment 68 Specilised Outptient Tretment 68 Anorexi Nervos in Adults 69 Antidepressnt Mediction 69 Antipsychotic Mediction 70 Behviourl Therpy 71 Cognitive Anlytic Therpy 71 Cognitive Behviourl Therpy 72 Fmily-Bsed Tretment (Mudsley Therpy) 73 Focl Psychonlytic Psychotherpy 73 Hormone Replcement Therpy 74 Interpersonl Psychotherpy 74 Nutritionl Supplements 75 Refeeding by Cyclic Enterl Nutrition 75 Serotonin Antgonist nd Antihistmine Mediction 76 Specilist (Formerly Nonspecific) Supportive Clinicl Mngement 76 Supportive Fmily Therpy 77 Combined Nutritionl Rehbilittion nd Cognitive Behviourl Therpy 77 Combined Nutritionl Rehbilittion, Cognitive Behviourl Therpy, nd Antipsychotic Mediction 77 Bulimi Nervos in Young People 78 Fmily-Bsed Tretment (Mudsley Therpy) 78 Bulimi Nervos in Adults 79 Active Light 79 Androgen Receptor Antgonist Mediction 79 Anticonvulsnt Mediction 79 Antidepressnt Mediction 80 Cognitive Behviourl Therpy 81 Cognitive Behviourl Therpy Guided Self-Help 83 Cognitive Behviourl Therpy Pure Self-Help 84 Crisis Intervention 85 Dilecticl Behviourl Therpy 85 Guided Imgery 85 Helthy Weight Progrm 86 NEDC: An Evidence Review V

8 Multimodl Dy Progrm 86 Multimodl Inptient Progrm 87 Nutritionl Mngement 87 Repetitive Trnscrnil Mgnetic Stimultion 88 Serotonin Antgonist 88 Stress Mngement 88 Combined Cognitive Behviourl Therpy nd Antidepressnt Mediction 89 Combined Cognitive Behviourl Therpy nd Interpersonl Psychotherpy 89 Combined Cognitive Behviourl Therpy Pure Self-Help nd Antidepressnt Mediction 90 Binge Eting Disorder in Adults 90 Anticonvulsnt Mediction 90 Antidepressnt Mediction 92 Behviourl Weight Loss 93 Behviourl Weight Loss Guided Self-Help 94 Cognitive Behviourl Therpy 95 Cognitive Behviourl Therpy Guided Self-Help 98 Cognitive Behviourl Therpy Pure Self-Help 99 Dilecticl Behviourl Therpy 99 Interpersonl Psychotherpy 100 Obesity Mediction 100 Obesity Tretment 101 Psychodynmic Interpersonl Psychotherpy 102 Virtul-Relity-Bsed Therpy 102 Combined Behviourl Weight Loss nd Antidepressnt Mediction 103 Combined Behviourl Weight Loss nd Cognitive Behviourl Therpy 103 Combined Behviourl Weight Loss, Cognitive Behviourl Therpy, nd Antidepressnt Mediction 104 Combined Cognitive Behviourl Therpy nd Anticonvulsnt Mediction 104 Combined Cognitive Behviourl Therpy nd Antidepressnt Mediction 105 Combined Cognitive Behviourl Therpy Guided Self-Help nd Obesity Mediction 106 Combined Cognitive Behviourl Therpy Pure Self-Help nd Motivtionl Interviewing 106 Combined Obesity Tretment nd Cognitive Behviourl Therpy 107 Summry of Reserch Findings 108 Anorexi Nervos in Young People 110 Anorexi Nervos in Adults 110 Bulimi Nervos in Young People 110 Bulimi Nervos in Adults 111 Binge Eting Disorder in Adults 111 Key Issues 112 Empiriclly-Supported Tretments re Avilble for Specific Eting Disorders 112 Dignostic Criterion Lenience in Controlled Trils 112 How Should Ptients with Eting Disorders Not Otherwise Specified Be Treted? 114 Beyond the Limits of Rndomised Controlled Trils 114 Tiered Service Provision 115 VI NEDC: An Evidence Review

9 Integrted Service Delivery 115 Tretment Dissemintion 116 Mentl Helth Litercy 116 Existing Level I nd II Evidence Neglects Relpse Prevention nd Long-Term Cre 116 Models of Cre Must Negotite Contextul Demnds 117 Professionl Associtions 117 Reserch Gps nd Directions 117 CHAPTER 6: FINDINGS IIII: PERSONS WITH LIVED EXPERIENCE, CARERS, AND COMMUNITY-BASED SUPPORT Views of Tretment nd Cre Approches 121 Sibling Experiences 124 Cring for Person with n Eting Disorder 125 Crer Experiences nd Impcts 125 Crer Support 126 Views on Recovery 128 Prevention 129 Consumer nd Crer Prticiption 129 Peer Support 130 Community-Bsed Supportive Orgnistions 131 Summry 131 Appendix A 134 Appendix B 136 Appendix C 137 Appendix D 238 Appendix E 239 Appendix F 259 Appendix G 262 REFERENCES 282 NEDC: An Evidence Review VII

10 List of tbles tble 1. Dignostic nd Sttisticl Mnul of Mentl Disorders Fourth Editition (DSM-IV) Dignostic Criteri for Eting Disorders 4 Tble 2. Risk Fctors for Eting Disorders 11 Tble 3. Level of Evidence Scheme 13 Tble 4. Summry of Eting Disorder Universl nd Selective Prevention Studies 35 Tble 5. The SCOFF: An Eting Disorder Screening Instrument for Primry Cre Settings 44 Tble 6. Summry of Eting Disorder Indicted Prevention Studies 60 Tble 7. Summry of Eting Disorder Tretment Studies 108 Tble 8. AN Tretment RCTs Wiving One or More Stndrdised Dignostic Criterions 113 Acronyms nd Abbrevitions AN BN BED BMI BT BWL BWLgsh CAT CBT CBTgsh CBTpsh CD DBT DSM EDNOS EDNOS-AN EDNOS-BN EOIT FBT HW IPT ML PIP RCT norexi nervos bulimi nervos binge eting disorder body mss index behviourl therpy behviourl weight loss behviourl weight loss guided self-help cognitive nlytic therpy cognitive behviourl therpy cognitive behviourl therpy guided self-help cognitive behviourl therpy pure self-help cognitive dissonnce dilecticl behviourl therpy Dignostic nd Sttisticl Mnul of Mentl Disorders eting disorder not otherwise specified eting disorder not otherwise specified norexi nervos subtype eting disorder not otherwise specified bulimi nervos subtype ego-oriented individul therpy fmily-bsed tretment helthy weight intervention interpersonl psychotherpy medi litercy psychodynmic interpersonl psychotherpy rndomised controlled tril VIII NEDC: An Evidence Review

11 Executive Summry Eting Disorders re serious illnesses ssocited with high level of morbidity nd burden of disese. They hve significnt negtive impct on cognitive, physicl, socil, nd psychologicl spects of helth, nd re ssocited with the high levels of mortlity. Bulimi Nervos nd Anorexi Nervos re the 8th nd 10th leding cuses, respectively, of burden of disese nd injury in femles ged 15 to 24 in Austrli, s mesured by disbilitydjusted life yers 1. Stndrdised mortlity rtes for eting disorders re 12 times higher thn the nnul deth rte from ll cuses in femles ged 15 to 24 yers of ge with up to 10% of those ffected dying s direct result of their disorder 2,3,4,5.The stndrdised mortlity rte for suicide mong those with Eting Disorders is the highest of ny psychitric illness 6. There re severl types of Eting Disorders, including norexi nervos, bulimi nervos, nd group of disorders clssed s Eting Disorders Not Otherwise Specified, which includes binge eting disorder. Eting Disorders involve both bnorml eting behviours nd psychologicl disturbnce. Abnorml eting behviours include excessive dietry restriction (e.g., fsting, skipping mels, nd cutting out entire food groups), binge eting (consuming lrge mounts of food in short period of time with sense of loss of control), nd behviours designed to rid oneself of food nd/or control shpe or weight, such s self-induced vomiting, excessive exercise, lxtive misuse, diet pills, diuretics, nd illicit drugs. Psychologicl disturbnces my include n intense fer of becoming ft, disturbed body imge, nd exggerted emphsis on weight nd shpe in reltion to one s self worth. Eting Disorders defy clssifiction solely s mentl illnesses s they not only involve considerble psychologicl impirment nd distress, but they re lso ssocited with mjor wide-rnging nd serious medicl complictions, which cn ffect every mjor orgn in the body. Despite this knowledge, the recognition of Eting Disorders s significnt physicl nd mentl helth conditions hs often been lcking. Eting Disorders nd disordered eting re believed to ffect significnt number of Austrlins, lthough the bsence of lrge, Austrlin community-bsed prevlence studies mkes exct estimtes difficult. In the bsence of Austrlin dt we re relint on lrge interntionl studies to mke such estimtes. The lifetime prevlence of norexi nervos in women is estimted to be between.3% nd 1.5%; the lifetime prevlence of bulimi nervos is estimted to be between.9% nd 2.1%; nd the lifetime prevlence of binge eting disorder is estimted to be between 2.5% nd 4.5%. Rtes of eting disorders re significntly less in men with rtes of norexi nervos, bulimi nervos nd binge eting disorder estimted to be between.1% to.5%, <.1% to 1.1%, nd 1.0% to 3.0%. There re two pek risk periods for the onset of Eting Disorders, erly dolescence nd in the lte teens, though Eting Disorders my first present t ny ge. Eting Disorders pper to hve n rry of biopsychosocil cuses though these re not clerly understood. Importnt risk fctors for the development of n Eting Disorder include dieting, disordered eting, nd poor body imge. Of concern, is tht reserch hs shown tht disordered eting incresed two-fold mong Austrlin mles nd femles from the 1990s to 2000s nd tht in Mission Austrli ntionl surveys body imge ws identified s the number one concern mong Austrlin youth ged 12 to 25 yers. Eting Disorders re significnt public helth problem, not only becuse they re ssocited with substntil psychologicl nd medicl comorbidity, functionl impirment, nd high medicl costs, but becuse they re often poorly recognised nd undertreted. In order to ddress this issue, Eting Disorders must be recognised s minstrem helth priority in Austrli. NEDC: An Evidence Review IX

12 Action is required to prevent Eting Disorders nd to support identifiction, erly intervention, nd redily ccessible, evidence-bsed tretment throughout ll stges of the illness process. This report considers severl key res relevnt to Eting Disorders including prevention, erly intervention, nd tretment. Evidence for this report ws collted by systemticlly reviewing the existing scientific evidence bse. Scientific dtbses were systemticlly serched nd the Ntionl Helth nd Medicl Reserch Council level of evidence scheme ws pplied to ddress key questions pertining to both youth nd dult popultions. Views nd roles of persons with lived experience, crers, community-bsed orgnistions nd professionl ssocitions re lso considered in this report. Promotion nd Prevention Inititives to prevent Eting Disorders could potentilly trnslte to significnt humn nd economic cost svings. A review of reserch into prevention inititives suggests tht there re evluted prevention progrms tht successfully reduce Eting Disorder risk. Helth promotion nd prevention inititives for diseses work by modifying risk fctors, enhncing protective fctors, nd/or reducing erly wrning signs, nd ultimtely im to reduce the incidence of disese. Prevention inititives occur cross spectrum from universl (i.e., generl community or entire popultions with no known risk fctors) to selective (i.e., popultions or groups t elevted risk) to indicted (i.e., groups with erly wrning signs), though indicted prevention methods re generlly seen s form of erly intervention. Evidence summrised within this report from rndomised, controlled trils identifies efficcious interventions to reduce Eting Disorder risk cross ll three prevention ctegories of universl, selective, nd indicted. The most vlidted pproch in universl prevention is medi litercy, which promotes medi dvoccy nd criticl evlution of the thin body idel nd medi body idels. The most vlidted pproches in selective prevention re cognitive-behviourl, which promote helthier nd blnced thinking on body imge, shpe, eting, nd weight, nutritionl nd exercise knowledge nd behviours, criticl thinking on the thin body idel, nd socil support, self esteem, nd coping; nd cognitive dissonnce, which engges individuls in ctivities tht require doption of n nti-thin stnce (i.e., brinstorming the costs ssocited with pursuing n ultrslender body idel) thereby creting ttitudinl dissonnce tht wekens the desire to pursue thinness. The prevention interventions summrised hve generlly been evluted mong students in clssroom settings or mong university-ged individuls, either fce-to-fce or in computer-bsed formt. These progrms ffect vrious risk nd protective fctors such s desire for thinness, negtive emotionlity, body disstisfction, self-esteem, shpe nd weight concern, nd my prevent Eting Disorder symptoms such s disordered eting behviours. While the evidence bse is promising, it is limited primrily by generlly short follow-up periods nd the prgmtic time nd resource chllenges tht impede evlution of impct upon Eting Disorder incidence. There is need for dditionl Level I nd II reserch to exmine the effectiveness of interventions over n extended time nd to explore promising inititives such s interventions for perfectionism nd peer-bsed prevention progrms. Although there re effective prevention progrms vilble, the dissemintion nd uptke of these progrms in the Austrlin community is low. One of the dngers of prevention inititives for Eting Disorders is tht non-evidencebsed inititives my ctully be hrmful, prticulrly if they contin content or overt discussion on Eting Disorders nd disordered eting. Individuls who re t-risk my lern nd pply extreme weight nd shpe control prctices. Another dnger previls if the content is delivered in mnner tht morlises eting ptterns or intensifies eting, weight, nd shpe concern. For instnce, consider the prevention eductor who discusses good versus bd foods rther thn focusing on helthy blnced eting nd modertion in food choices, drws public ttention to individuls weights or body mss index, or conveys inpproprite personl X NEDC: An Evidence Review

13 ttitudes on body shpe nd weight. The golden rule guiding ll prevention inititives for Eting Disorders should be first, do no hrm, nd evlution for hrm nd benefit should be built-in requirement of ny dissemintion strtegy. While evidence for effectiveness should be weighted significntly when considering the wy forwrd for Eting Disorders prevention, the mens by which evidence is defined nd collected limits the scope of pproches tht re considered effective. Potentilly vluble pplied prevention inititives such s public wreness nd medi cmpigns, medi codes of conduct, cmpigns to enhnce community mentl helth litercy (i.e., knowledge, skills, nd beliefs tht enble the prevention, identifiction, nd mngement of mentl helth issues), trining nd eduction for helth nd eduction professionls, nd whole-of-school or community-bsed progrms, re less menble to evlution with rndomised, controlled, methodology, yet their potentil contribution is significnt. Finlly, there re existing prevention progrms nd messging in plce in Austrli tht trget relted conditions, including obesity nd body imge concerns. Prtnerships, collbortion, nd integrtion, rther thn stnd-lone models, wrrnt considertion, so tht public helth concerns cn be ddressed jointly, intelligently, nd effectively. There is currently lck of collbortion between the Eting Disorders nd obesity sectors in Austrli, despite overlp in behviours nd ttitudes trgeted nd comorbidity, which my ultimtely detrct from the success of inititives in either sector. Identifiction nd Erly Intervention Identifiction nd erly intervention re criticl prt of the mentl helth promotion spectrum. Public, policymker, nd dministrtor ttention is rgubly most commonly cst on cute tretment nd prevention, so this spectrum component cn pper to fll through the gp. Individuls who re showing wrning signs of Eting Disorders re t much higher risk of developing n Eting Disorder, nd prtil syndrome Eting Disorders lone crry heightened risk of impirment. Further, reserch shows significntly improved outcomes for individuls who re identified nd treted erly in the course of illness. Indicted prevention is form of erly intervention trgeted to those showing erly signs of problem or illness, or individuls identified s t very high-risk of developing disorder. There is rndomised, controlled tril evidence of the effectiveness of indicted progrms tht successfully reduce risk fctors for Eting Disorders. Intervention pproches such s cognitive-behviourl therpy, cognitive dissonnce, medi litercy, nd multicomponent interventions re mong the most vlidted. Considertion of the evidence nd literture revels mny importnt issues tht re relevnt to ddressing Eting Disorder identifiction nd erly intervention in Austrli. Like the universl nd selective prevention field, evidence-bsed erly intervention progrms re vilble, yet hve limited vilbility cross Austrli. There re mny promising erly interventions tht hve not been systemticlly evluted. Trining nd eduction for helth, eduction, nd fitness professionls, nd public wreness cmpigns tht enhnce mentl helth litercy re likely to be of vlue. Interventions shown to be successful in other psychologicl conditions tht hve not been investigted in those t risk of developing Eting Disorders represent promising reserch direction. Selfhelp cognitive-behviourl interventions, used lone or in guided formt with brief sessions with therpist, hve been vlidted on individuls with cute Eting Disorders, but not those showing erly wrning signs. Given tht self-help cognitive-behviourl interventions form the first step within n evidence-bsed stepped cre pproch to treting Bulimi Nervos nd Binge Eting Disorder, these interventions re likely to be effective for those with erly wrning signs. Individuls with Eting Disorders dely tretmentseeking for n verge of eight yers, suggesting significnt brriers to help-seeking, with one principl brrier being stigm. The public mentl helth inititive beyondblue successfully improved public knowledge nd ttitudes towrd depression, nd similr model pplied to Eting Disorders would likely yield considerble benefit for bulimi nervos nd binge Eting Disorder, it would be resonble to expect tht they re likely to be effective for individuls with erly illness chrcteristics. Finlly, there re gps in our knowledge of the nturlistic course of Eting Disorder illnesses, NEDC: An Evidence Review XI

14 prticulrly mong popultions such s boys, very young children, ethnic minorities, nd those with less investigted types of Eting Disorders. Reserch is needed to help understnd prodroml nd subsyndroml presenttions, nd reltionships to full clinicl syndromes, so tht erly detection nd intervention pthwys cn be strengthened. Tretment Stndrds nd Strtegies Mny individuls with Eting Disorders recover successfully through pproprite cre nd tretment, prticulrly if tretment is ccessed in timely mnner. Although the clinicl picture is bright for mny people with Eting Disorders, significnt gps remin in the tretment reserch. Among dults, tretment pproches for bulimi nervos nd binge eting disorder re mong the most wellvlidted nd empiriclly supported, reltive to the other Eting Disorders. Cognitivebehviourl tretment, delivered fce-to-fce, or in self-dministered or therpist-ssisted self-help formt re efficcious in reducing core symptoms such s binge eting nd self-induced vomiting. Empiriclly-supported progrms typiclly spn 12 to 20 weeks durtion. Phrmcologicl interventions, in prticulr, ntidepressnt medictions my hve role in treting bulimi nervos nd binge eting disorder in dults. Binge eting disorder is often comorbid with obesity, given the excess of energy intke reltive to energy expenditure, nd there ws evidence tht specific obesity medictions could ssist with weight mngement. For dults with norexi nervos, the evidence bse is more limited, nd is complicted by smll smple sizes, high tretment drop-out rtes, nd generl lck of comprison of ctive tretment pproches. Approches tht my be helpful include cognitive nlytic therpy, cognitive-behviourl therpy, interpersonl psychotherpy, focl psychonlytic psychotherpy, nd fmily interventions tht focus on reducing symptoms of Eting Disorders. Phrmcologicl interventions for norexi nervos in dults do not currently hve strong evidence bse. For youth with norexi nervos, the tretment picture is more promising, with support for the effectiveness of specific type of fmily therpy, Mudsley fmily-bsed tretment (FBT), dministered over 6 to 12 months durtion. FBT focuses on ddressing Eting Disorder symptoms through three phses of ssisting prents to re-feed their child (weight restortion phse), hnding control over eting bck to the young person following normlistion of eting ptterns, nd finlly, ddressing developmentl issues of relevnce to the young person. For youth with bulimi nervos, n dpted version of Mudsley FBT hs received preliminry support. Evidence from rndomised, controlled trils is not the only informtion to consider when plnning the pth forwrd for effective tretment stndrds nd strtegies. Although these trils confer high-qulity evidence of tretment effectiveness, they re not generlly set up to evlute complex tretment models. Eting Disorders re chrcterised by impirment to cognition, behviour, psychologicl nd socil functioning, feeding nd nutrition prctices, physiologicl processes, nd medicl sttus, therefore monotherpeutic, one-size fits ll pproch to tretment my be trgiclly short-sighted nd ill-fitting one. If one considers tretment within hub-nd-spokes prdigm, specific tretment interventions cn be considered the spokes of tretment while the professionls, disciplines, nd service nd prctice models form the tretment hub. Rndomised, controlled trils evlute specific tretment interventions, yet do not typiclly evlute the tretment hub nd underlying service models. The clinicl Eting Disorder literture clerly recognises the importnce of cross-sector, multidisciplinry pproch, supporting vilbility of medicl, psychitric, psychologicl, dietetic, nd llied helth cre, cross continuum of cre from inptient to dy ptient to outptient, when indicted. This is not to sy tht ll cute Eting Disorder presenttions re sufficiently severe to wrrnt or require multidisciplinry, intensive mngement; in some cses, self-help XII NEDC: An Evidence Review

15 tretment or psychotherpy on n outptient bsis my be sufficient to obtin cliniclly significnt benefit. Given tht there re effective tretment pproches tht hve been identified, prticulrly for bulimi nervos nd binge eting disorder in dults, nd norexi nervos in youth, nd tht service models hve been rticulted nd re opertionl in privte nd public primry, secondry, nd tertiry helth contexts cross Austrli, it would seem n pproprite time to rticulte stndrds of cre to dvnce ccess to high qulity, sfe, effective cre. A potentil wy forwrd to mnging Eting Disorders in Austrli would be to llow sufficient ccess to empiriclly-supported tretments under the Medicre scheme there is currently indequte ccess to support durtion nd qulity of cre. Reserch gps in tretment include insufficient understnding of the effective mngement of norexi nervos, in cute nd chronic presenttions, limited support for existing service models to rigorously evlute outcomes, tretments for individuls with illnesses tht fll into the dignostic clssifiction eting disorder not otherwise specified (besides binge eting disorder), nd methods to prevent tretment drop-out. Consumers nd Crers Reserch dt indictes tht individuls with lived experience of Eting Disorders vlue rnge of therpeutic pproches, such s nutritionl, psychotherpeutic, nd phrmcologicl interventions. They vlue rnge of progrm models, including outptient, dy ptient, nd inptient settings, nd view specilist Eting Disorder centres s prticulrly beneficil becuse of the specilist knowledge of stff, greter focus on Eting Disorder symptoms, nd support from peers fcing similr chllenges. Individuls with lived experience, crers, nd fmilies generlly report tretment s more cceptble if it is inclusive of crers nd loved ones. The mngement of Eting Disorders concerns cre systems tht extend beyond primry, secondry, nd tertiry helth services through to home nd community contexts. Crers nd fmilies ply n instrumentl role in supporting nd cring for individuls with Eting Disorders. A crer my be prent, child, sibling, grndprent, prtner, friend, neighbour, or other individul in the person s life. Crers re n essentil but often overlooked component of the helth cre system nd require support nd ssistnce to effectively crry out their role. Crers needs nd preferences for support vry, though my include informtion nd knowledge, skills-bsed trining, finncil support, community-bsed support, co-ordintion or cse mngement services, dvoccy trining nd services, ssistnce to overcome brriers to pid employment, nd support for physicl nd psychologicl wellbeing. Community-bsed orgnistions, such s chritble incorported consumer-bsed orgnistions nd professionl ssocitions, ply n importnt role within the helth system. They support nd dvocte strtegies for promotion nd prevention, identifiction nd erly intervention, tretment of Eting Disorders, nd crer support. Communitybsed orgnistions my fulfil functions such s dvoccy, public eduction, informtion nd referrl, peer support, crer support, nd skills trining nd eduction for professionls nd community members. Professionl ssocitions represent people working within sector of the workforce nd provide dvoccy, ledership, public eduction, networking, nd trining nd eduction opportunities for workforce trining. Building nd supporting community cpcity to improve the helth nd development of individuls is impertive to building helthier society. Eting Disorders: The Wy Forwrd for Austrli The evidence nd discussion summrised in this report contributes clinicl nd empiricl foundtion for dvncement of Eting Disorders promotion nd prevention, erly intervention, nd tretment in Austrli. NEDC: An Evidence Review XIII

16 CHAPTER 1 BACKGROUND In recognition tht body imge nd Eting Disorders re pressing issue within the Austrlin community, the Commonwelth of Austrli commissioned this report to be prepred by Butterfly Foundtion ( Butterfly ) on behlf of the Ntionl Eting Disorders Collbortion (NEDC). The NEDC is collbortion of over 80 orgnistions with strong interest in Eting Disorders nd body imge, nd Butterfly is the ppointed led gency of this collbortion. The Commonwelth Deprtment of Helth nd Ageing requested review of evidence on the helth promotion nd prevention, identifiction nd erly intervention, nd tretment of Eting Disorders, s prt of strtegy to identity the wy forwrd for Eting Disorder mngement in Austrli. Overview Eting Disorders crry one of the highest burdens of disese in Austrli nd potentilly involve high humn nd economic cost. Body imge nd disordered eting re relted, significnt issues. Body Imge Body imge involves the thoughts, perceptions, nd feelings tht individuls experience towrd their bodies. The cognitive component is mesured in terms of stisfction or disstisfction with one s body shpe or weight, nd is the typiclly used method to ssess degree of body imge disturbnce. In Western society, disstisfction with body imge hs become culturl norm. Austrli s ntionl 2007 survey 7 of young people identified body imge s the number one concern mongst both mles nd femles. In the Austrlin Longitudinl Study on Women s Helth, only 22% of women in the helthy weight rnge reported being hppy with their weight, nd 74% of the entire cohort wnted to weigh less, including 68% of women of helthy weight nd 25% of underweight women 8. Body imge nd Eting Disorders re one of the primry resons tht young people ccess the emil-bsed counselling service offered through Kids Helpline 9. While body imge disstisfction hs typiclly been more prevlent mong femles, prticulrly young women, the rte of disstisfction is incresing mong boys nd men, where levels of body imge concern re similr in 11 to 24 yer old Austrlin femles nd mles (35% versus 28%). However, unlike femles, mles re more likely to desire len, musculr ppernce rther thn low body weight or thin figure, lthough this idel cn vry depending on the socioculturl context the individul identifies with. Body imge is n issue of mjor ntionl public helth concern becuse poor body imge longitudinlly predicts reduced mentl nd physicl helth on multiple indices, including incresed depression, lowered socil functioning, nd poor lifestyle choices in Austrlin mles nd femles t different ge 1 NEDC: An Evidence Review

17 CHAPTER 1 BACKGROUND phses 10,11. Individuls with poor body imge re more likely to engge currently or prospectively in dngerous dietry prctices nd weight control methods, excessive exercise, substnce buse, nd unnecessry surgicl interventions to lter ppernce. As well s lowering qulity of life nd endngering spectrum of physicl nd mentl helth outcomes, poor body imge is well-estblished pthwy to disordered eting, one of the most robust risk fctors identified for Eting Disorder development to dte. Body imge disturbnce is one of the dignostic criteri of norexi nervos (AN). Not withstnding the ssocition between body imge nd Eting Disorders, body imge is significnt issue in its own right nd deserving of serious considertion given tht poor or good body imge is ssocited with different physicl, socil, nd mentl trjectories. Disordered Eting Between 1995 nd 2005, the prevlence of disordered eting behviours incresed two-fold mong both mles nd femles ged 15 yers nd older % of 12 to 17 yer old girls nd 68% of 12 to 17 yer old boys hve been on diet of some form 13. Within one-yer time period, lmost hlf (46%) of young women reported dieting specificlly to lose weight 14. In generl popultion smple of women ged 18 to 42 yers, the point prevlence for the regulr use of specific weight control methods ws 4.9% for excessive exercise, 3.4% for extreme dietry restrint, 2.2% for diet pills, 1.4% for self-induced vomiting, 1.0% for lxtive misuse, nd.3% for diuretic misuse 15. In dolescent girls of whom 15% were overweight, 55% were norml weight, nd 30% were underweight, 47% reported currently trying to lose weight 17. Of those tht were underweight, pproximtely 50% perceived themselves to be of norml weight nd pproximtely 20% perceived themselves to be overweight 17. In preceding one-month period, 36% of 14 to 16 yer old girls reported using one of the following weight control methods; fsting, crsh dieting, slimming tblets, diuretics, lxtives, or cigrettes (specificlly to control weight) 17. Disordered eting is the single most importnt proximl indictor of onset of Eting Disorders, yet even in the bsence of clinicl Eting Disorder, disordered eting is ssocited with rnge of mentl, physicl, nd socil impirments. Disordered eting subsyndromes comprise illness prodromes in smll subset of individuls. Reserch conducted in Austrli hs shown tht dolescent femles who diet t severe level re 18 times more likely to develop n Eting Disorder within 6 months 18. Over 12 months, they hve 1 in 5 chnce of developing n Eting Disorder 18. An interntionl longitudinl study found tht ll new cses of AN hd exhibited subsyndroml precursor t study mesurement point prior to Eting Disorder onset 19. For n excellent summry of the reltion between Eting Disorder subsyndromes, prodromes, nd full syndromes, the interested reder my refer to Le Grnge nd Loeb (2007) 20. The pthwy from disordered eting to Eting Disorders is of substntil societl concern given tht in our society the rte of extreme dieting, prticulrly mong women nd dolescent femles, is high nd incresing. One in 16 dolescent femles reported fsting (e.g., going without food for dy or more) t lest once week 16 nd 1 in 5 reported fsting in the preceding month 17. Ntionl Frmework Literture Review 2

18 CHAPTER 1 BACKGROUND Eting Disorders Eting Disorders re serious group of psychitric disorders with high level of impirment. They involve poor body imge, bnorml eting behviours, overemphsis of the importnce of weight nd shpe, nd the use of extreme weight control behviours. Eting Disorders re often poorly understood nd underestimted in contemporry society. There re mistken beliefs tht Eting Disorders re bout vnity, dieting ttempt gone wrong, n illness of choice, cry for ttention, or person going through phse. These types of misconceptions re not evidenced solely by the generl public, but re commonly the responses nd explntions sufferers receive when they present for help from generl prctitioners 21. Yet, the origins of Eting Disorders re complex nd multifceted, nd the illness pthology is chrcterised by severe psychitric nd medicl mnifesttions. Eting Disorders hve culturl history tht pre-dtes the reltively recent Western socioculturl fusion of thinness with beuty idel. AN ws first mediclly documented simultneously in seprte prts of the world by Gull, British physicin, in nd Lsegue, French neuropsychitrist, in , nd since this time, hs been understood by the psychitry profession to be serious disorder with substntil medicl nd psychitric pthology. Prior to medicl documenttion, other reports existed, such s description in of nervous consumption syndrome resembling wht we understnd s AN. Best estimtes of incidence over time nd crossculturlly hve remined mrkedly stble, including mong non-western societies nd cultures tht do not overvlue thinness. Bulimi nervos (BN) ws described in nd ws formlly recognised s distinct disorder in the third edition of the Dignostic nd Sttisticl Mnul of Mentl Disorders in This illness is lso of mrked pthologicl significnce, yet expert opinion suggests tht BN hs likely risen in the context of emerging Western society. Binge eting disorder (BED), n Eting Disorder specified within the eting disorder not otherwise specified (EDNOS) ctegory of Eting Disorders, ws identified in the 1990s, where it ws mde provisionl reserch dignosis in the fourth edition of the Dignostic nd Sttisticl Mnul of Mentl Disorders; it hs yet to be formlly recognised s n Eting Disorder though is expected to be in the next revision of this mnul. Dignostic Nomenclture The Dignostic nd Sttisticl Mnul of Mentl Disorders fourth edition (DSM-IV) 27 recognises three cliniclly dignosble Eting Disorders. These re AN, BN, nd EDNOS. Specific dignostic criteri for these disorders re listed in Tble 1. It is importnt to note tht there re limittions to the present dignostic nomenclture nd professionl workgroups re reviewing the criteri nd clssifictions in preprtion for the next revision of the Dignostic nd Sttisticl Mnul of Mentl Disorders - tenttively scheduled for publiction in It is our understnding tht the chnges tht will be mde will be conservtive nd will not hve n unduly negtive impct on the utility of the lrge reserch nd evidence bse tht hs ccumulted to dte. 3 NEDC: An Evidence Review

19 CHAPTER 1 BACKGROUND Tble 1. Dignostic nd Sttisticl Mnul of Mentl Disorders Fourth Edition (DSM-IV) 27 Dignostic Criteri for Eting Disorders Anorexi Nervos Refusl to mintin body weight t or bove norml level for ge nd height or filure to mke expected weight gin during period of growth (i.e. weight is less thn 85 percent of tht expected). Intense fer of becoming ft, despite being substntilly underweight. Disturbed body imge, undue influence of weight nd shpe on self-evlution, or denil of the seriousness of one s low body weight. Absence of t lest three consecutive menstrul cycles in postmenrchel femle b. Restricting subtype: During the episode of norexi nervos, the person hs not regulrly engged in binge eting episodes or purging behviours. Binge-Eting/Purging subtype: During the episode of norexi nervos, the person hs regulrly engged in binge eting episodes nd purging behviours. Bulimi Nervos Recurrent episodes of binge eting, defined s eting n unusully lrge mount of food within discrete time period (e.g., two hours) ccompnied by sense of loss of control. Recurrent nd inpproprite compenstory behviours to prevent weight gin (e.g., vomiting, misuse of lxtives, diuretics, diet pills, enems, medictions; fsting; or compulsive exercise). Binge-eting nd purging occur t lest twice weekly for three months c. Undue influence of weight nd shpe on self-evlution. Symptoms do not occur within n episode of norexi nervos. Purging subtype: During the episode of bulimi nervos, the person hs regulrly engged in purging behviours (i.e. self-induced vomiting or the misuse of lxtives, diuretics or enems). Non-purging subtype: During the episode of bulimi nervos, the person hs used other compenstory behviours (i.e. fsting; excessive exercise), but hs not regulrly engged in purging behviours (i.e. self-induced vomiting or the misuse of lxtives, diuretics or enems). Eting Disorder Not Otherwise Specified For femles, ll criteri for norexi nervos re met except the individul hs regulr menstrul cycle All criteri re met for norexi nervos, except despite significnt mount of weight lost, the individul s weight is in the norml rnge All criteri for bulimi nervos re met, except tht binge eting nd inpproprite compenstory behviours occur less regulrly thn twice weekly or for less thn three months Recurrent use of inpproprite compenstory behviours by person of norml weight following consumption of smll mounts of food Recurrent chewing nd spitting out, but not swllowing, lrge mounts of food Binge eting disorder: recurrent episodes of binge eting without the use of inpproprite compenstory behviours Likely to be revised upwrd in DSM-V (i.e. DSM fifth edition). b Likely to be removed in DSM-V. c Likely to be revised downwrd in DSM-V. NEDC: An Evidence Review 4

20 CHAPTER 1 BACKGROUND Anorexi Nervos AN involves hving body weight tht is 15 percent lower thn norml, relentless AN involves hving body weight tht is 15 percent lower thn norml, relentless pursuit of thinness, disturbed view of one s ctul shpe nd weight, lck of menstrution mong girls nd women, nd n intense fer of gining weight or becoming ft. A poor body imge is centrl feture of this disorder, s is the over importnce ttributed to ttining desired body weight nd shpe, such tht one s shpe nd weight become the individul s reference point for self-evlution. Femles with AN typiclly overvlue thinness nd low body weight, while mles with norexi re more likely to vlue nd strive towrd len body shpe tht is musculr nd low in ft. Despite being strved or mlnourished, individuls with AN see themselves s overweight, nd become intensely preoccupied with eting, food, nd shpe nd weight control. They engge in rnge of extreme weight-control behviours, including severely restricting their food intke, compulsive exercising, lxtive nd diuretic use nd buse, nd purging to expel clories. They my et smll quntities nd portions of food, skip mels, nd become overly concerned bout the mcronutrient content of food, prticulrly voiding fts nd, to lesser extent, crbohydrtes. In the erly phse of the illness, AN my be difficult to distinguish from norml dieting or weight loss, which typiclly involves restricting certin foods nd portions of food, nd incresing physicl ctivity. Unlike norml dieting, individuls with AN continue to restrict dietry intke even when norml weight is chieved. Physicl ctivity is distinguishble in degree nd intensity. In the initil phse of the illness incresed physicl ctivity my pper helthy, yet in AN it cn progress to excess, consuming mny hours of the dy in pprent (e.g., running, cycling, gym clsses) or subtle (e.g., incresed incidentl wlking, tensing nd flexing muscles) wys. There re two subtypes of AN, restrictive subtype nd binge-nd-purge subtype. Those with the restrictive subtype engge in severe dietry restriction, nd those with the bingend-purge subtype demonstrte binge eting nd purging behviours. Bulimi Nervos BN is chrcterised by recurrent episodes of binge-eting, described s consuming very lrge mount of food within short period of time with n ccompnying sense of loss of control, nd regulr use of inpproprite behviours designed to compenste for binge eting. These behviours include fsting, vomiting, lxtive nd diuretic misuse, enems, diet pills, nd compulsive exercising. If these behviours occur in n instnce in which ll criteri for AN re stisfied, then the dignosis of AN is scribed nd not BN. Like AN, BN involves strong drive to ttin overvlued body shpe nd weight gols nd one s body imge becomes n overvlued mens of evluting self-worth. A vicious cycle of selfstrvtion, binge eting, nd purging, is typicl of individuls with BN. Individuls with BN re typiclly of verge weight for their ge nd height, lthough it is not uncommon for their weight to fluctute. The behviourl fetures of the illness re similr to AN. Eting Disorder Not Otherwise Specified EDNOS is dignostic ctegory for individuls who present with other extreme disturbnces in eting behviours nd body imge, tht re sufficiently distressing nd disbling s to wrrnt clssifiction s psychitric condition. This ctegory cptures individuls who do not meet full criteri for AN or BN, but nonetheless evidence disordered eting behviours to cliniclly significnt degree. For instnce, womn my present with ll dignostic fetures of norexi emcition, disturbed body imge, nd n intense fer of becoming ft but still hve regulr menstrul cycle. As well s those disorders resembling AN nd BN, the EDNOS ctegory contins BED. BED is defined by recurrent episodes of binge eting without the regulr use of compenstory behviours. 5 NEDC: An Evidence Review

21 CHAPTER 1 BACKGROUND The ctegory of EDNOS lso describes those Eting Disorders tht involve the use of inpproprite compenstory behviours in the bsence of binge eting, repeted chewing nd spitting of food, nd extreme cloric restriction despite insubstntil weight loss. The dignostic ctegory of EDNOS is sometimes mistkenly ssumed to describe individuls with milder or less serious forms of Eting Disorders. This is n incorrect ssumption; individuls with EDNOS experience psychologicl nd physiologicl morbidity nd secondry impirment tht is comprble to AN nd BN 28,29,30,31. This group represent between 40% nd 60% of tretment-seekers t Eting Disorder specilty clinics 31. Medicl Morbidity People with Eting Disorders cn become seriously unwell nd mny will require ccess to hospitl tretment. Common resons for hospitlistion include medicl complictions (e.g., crdic bnormlities, electrolyte disturbnce, brdycrdi, hypotension), suicidl behviour, nd lck of response to outptient tretment in very underweight ptient. New South Wles dt hve suggested tht 11% re dmitted with life-thretening compliction 32, up to 61% if child inptients re considered only 33. Young people cn experience significnt impirment in growth nd physicl development when developing n Eting Disorder before completing puberty. Anorexi Nervos The strvtion syndrome tht ccompnies AN induces physicl chnges tht substntilly elevte risk of medicl problems. There re host of medicl complictions of AN, the most serious being deth due to crdic rrest. Medicl nd physicl consequences include fluid depletion, electrolyte imblnces, incresed sensitivity to the cold, growth of fine downy hir to ssist with wrmth retinment, muscle wstge, bloting, constiption, nd loss of hir from the sclp. Insufficient nutrient intke frequently results in clcium deficiency nd nemi, nd elevted cholesterol, bnorml lipid profiles, nd electrolyte disturbnce my occur. If strvtion is prolonged it cn hve very severe, longlsting impct on the physicl helth of the individul, impcting upon nerly ll bodily systems nd mjor orgns. AN cn dmge the hert, the liver, kidneys, stomch nd bowels, muscles nd bones, nd reproductive system. Arising from this dmge cn include helth problems such s kidney filure, hert filure, osteoporosis, infertility, nd even sudden crdic rrest 34. Children nd dolescents with AN cn experience dditionl physicl consequences, such s rrested growth nd development, nd even fter resolution of the Eting Disorder will, s dults, experience significntly higher levels of nxiety disorders, crdiovsculr symptoms, chronic ftigue, pin, depressive disorders, limittions in ctivities due to poor helth, insomni, neurologicl symptoms, nd suicide ttempts 35. Bulimi Nervos The most common physicl consequences of BN re dentl nd gum problems. Selfinduced vomiting erodes dentl enmel, contributes to cvities, cn disturb electrolyte levels, nd reduce the level of potssium in the blood. Low potssium concentrtion cn cuse wekness nd disturb electricl impulses in the hert. Other medicl nd physicl consequences include inflmmtion of the lining of the digestive trct, swollen slivry glnds, mouth sores, gstrointestinl bleeding, nd gstric rupture hs been reported to occur in some instnces. Eting Disorder Not Otherwise Specified Individuls with BED re t incresed risk of weight gin nd the physicl nd medicl complictions ssocited with overweight nd obesity 36. Conditions observed mong these individuls include Type II dibetes, high blood pressure, menstrul problems, nd gstrointestinl problems 37. Dt on women with BED indicte tht they experience higher rte of medicl problems thn women who re obese without BED 38. With respect to eting pthology, generl psychopthology, nd physicl helth, it is importnt to note tht there NEDC: An Evidence Review 6