Eating disorders; recognition and treatment - NICE (PDF)

National Institute for Health and Care Excellence Version 2.0 Eating disorders: recognition and treatment Appendices A - G Clinical Guideline Methods, evidence and recommendations May 2017 Final Developed by the National Guideline Alliance, hosted by the Royal College of Obstetricians and Gynaecologists   Eating disorders: recognition and treatment Contents © National Institute for Health and Care Excellence 2017. All rights reserved Eating disorders: recognition and treatment Disclaimer Healthcare professionals are expected to take NICE clinical guidelines fully into account when exercising their clinical judgement. However, the guidance does not override the responsibility of healthcare professionals to make decisions appropriate to the circumstances of each patient, in consultation with the patient and/or their guardian or carer. Copyright © National Institute for Health and Care Excellence 2017. All rights reserved  Eating disorders: recognition and treatment Contents © National Institute for Health and Care Excellence 2017. All rights reserved 4 Contents Appendices.......................................................................................................................... 5 Appendix A: Scope ...................................................................................................... 5 1 What the guideline is about ......................................................................................... 6 1.1 Who is the focus?.................................................................................................. 6 1.2 Settings................................................................................................................. 6 1.3 Activities, services or aspects of care.................................................................... 6 1.4 Economic aspects ................................................................................................. 7 1.5 Key issues and questions...................................................................................... 7 1.6 Main outcomes...................................................................................................... 8 2 Links with other NICE guidance and NICE pathways ................................................ 9 2.1 NICE guidance ...................................................................................................... 9 2.2 NICE Pathways ..................................................................................................... 9 3 Context........................................................................................................................ 10 3.1 Key facts and figures........................................................................................... 10 3.2 Current practice................................................................................................... 10 3.3 Policy, legislation, regulation and commissioning ................................................ 10 Appendix B: Declarations of Interest.......................................................................... 12 Appendix C: Special advisors to the committee ......................................................... 24 Appendix D: Stakeholders for the Guideline............................................................... 25 Appendix E: Researchers contacted to request information about unpublished or soon to be published studies ................................................................. 39 Appendix F: Review questions and protocols ............................................................ 40 Appendix G: Research recommendations .................................................................. 71 G.1 Psychological treatments for binge eating disorder....................................... 71 G.1.1Why this is important....................................................................... 71 G.2 Duration of psychological treatment.............................................................. 71 G.2.1Why is this important....................................................................... 72 G.3 Stepped care for psychological treatment..................................................... 72 G.3.1Why this is important....................................................................... 72 G.4 Treating an eating disorder in people with a comorbidity .............................. 72 G.4.1Why this is important....................................................................... 72 G.5 Treating eating disorders in men .................................................................. 73 G.5.1Why this is important....................................................................... 73  Eating disorders: recognition and treatment Scope © National Institute for Health and Care Excellence 2017. All rights reserved 5 Appendices 1 Appendix A: Scope 2 NATIONAL INSTITUTE FOR HEALTH AND CARE 3 EXCELLENCE 4 Guideline scope 5 Eating disorders: recognition and treatment 6 Topic 7 This guideline will replace the NICE guideline on eating disorders (CG9) and will be used to 8 develop the NICE quality standard on eating disorders. 9 Who the guideline is for 10 This guideline is intended for use by: 11  People with a diagnosis of an eating disorder (including anorexia nervosa, bulimia 12 nervosa, binge eating disorder, and eating disorders generally called 'atypical eating 13 disorders') and their families and carers. 14  Professional groups involved in the recognition and treatment of eating disorders and in 15 care for people with a diagnosis of an eating disorder. These include the following 16 professionals from primary and secondary care: psychiatrists, clinical psychologists, 17 mental health nurses, community psychiatric nurses, social workers, practice nurses, 18 dieticians , secondary care medical, dental, nursing and paramedical staff, occupational 19 therapists, pharmacists, paediatricians, other physicians, general medical and dental 20 practitioners, psychotherapists and family/other therapists. 21  Professionals in other health and non-health sectors who may have direct contact with or 22 be involved in providing health or other public services for people with a diagnosis of an 23 eating disorder. These may include professionals who work in the criminal justice and 24 education sectors. 25  People with responsibility for planning services for people with a diagnosis of an eating 26 disorder and their families and carers, including directors of public health, NHS trust 27 managers and managers in clinical commissioning groups. 28 NICE guidelines cover health and care in England. Decisions on how they apply in other UK 29 countries are made by ministers in the Welsh Government, Scottish Government, and 30 Northern Ireland Executive. 31 Equality considerations 32 NICE has carried out an equality impact assessment during scoping. The assessment: 33  lists equality issues identified, and how they have been addressed 34  explains why any groups are excluded from the scope, if this was done. 35 The guideline will look at inequalities relating to gender, age, ethnicity and geographical 36 location. 37  Eating disorders: recognition and treatment Scope © National Institute for Health and Care Excellence 2017. All rights reserved 6 1 What the guideline is about 1 1.1 Who is the focus? 2 Groups that will be covered 3  Children, young people and adults with an eating disorder (anorexia nervosa, bulimia 4 nervosa, binge eating disorder or atypical eating disorder), or a suspected eating disorder. 5 Groups that will not be covered 6  People with disordered eating because of a physical health problem or another primary 7 mental health problem of which a disorder of eating is a symptom (for example, 8 depression). 9  People with feeding disorders, such as pica or avoidant restrictive food intake disorders 10 (for example, food avoidance emotional disorder or picky/selective eating). 11  People with obesity without an eating disorder. 12 1.2 Settings 13 Settings that will be covered 14 The guideline will cover all settings in which care commissioned by health and social care is 15 provided, including health, social care and educational settings. 16 1.3 Activities, services or aspects of care 17 Key areas that will be covered 18 1 Identification, assessment and monitoring: 19  recognition and early identification of eating disorders (including formal recognition tools) 20  assessment in people with an eating disorder (including formal assessment tools) 21  monitoring in people with an eating disorder. 22  2 Interventions to treat eating disorders through all phases of the disorder including: 23  psychological interventions, including low-intensity interventions such as self-help and 24 Internet-based therapies, high-intensity interventions such as family therapy and family- 25 based treatments, and individual therapies such as psychodynamically informed 26 therapies, cognitive behavioural therapy (CBT), interpersonal psychotherapy and 27 behavioural interventions 28  pharmacological interventions (note that guideline recommendations will normally fall 29 within licensed indications; exceptionally, and only if clearly supported by evidence, use 30 outside a licensed indication may be recommended. The guideline will assume that 31 prescribers will use a drug’s summary of product characteristics to inform decisions made 32 with individual patients) 33  nutritional interventions, including tube feeding 34  physical interventions, such as transcranial magnetic stimulation and physiotherapy. 35  3 The management of physical health problems caused by an eating disorder. 36  4 Interventions for eating disorders in the context of common physical and 37 psychological comorbidities. 38  5 Interventions to support families and carers. 39  Eating disorders: recognition and treatment Scope © National Institute for Health and Care Excellence 2017. All rights reserved 7  6 Organisation and delivery of services to support practitioners in the effective and 1 competent delivery of interventions. 2  7 Consent and compulsory treatment. 3 Areas that will not be covered 4  1 The diagnosis or treatment of people with disordered eating in the context of a 5 separate physical or other primary mental disorder of which a disorder of eating is a 6 symptom (such as loss of appetite in depression) 7  2 The management of loss of appetite, psychogenic disturbance of appetite or other 8 conditions that involve significant weight loss but which are due to known physical illness. 9  3 The management of the wider range of eating disorders typically but not exclusively 10 occurring in children (for example, Pica or avoidant restrictive food intake disorders such 11 as food avoidance emotional disorder or picky/selective eating). 12  4 Obesity in the absence of an eating disorder. 13 1.4 Economic aspects 14 We will take economic aspects into account when making recommendations. We will develop 15 an economic plan that states for each review question (or key area in the scope) whether 16 economic considerations are relevant, and if so whether this is an area that should be 17 prioritised for economic modelling and analysis. We will review the economic evidence and 18 carry out economic analyses, using an NHS and personal social services (PSS) perspective, 19 as appropriate. 20 1.5 Key issues and questions 21 While writing this scope, we have identified the following key issues, and key questions 22 related to them: 23  1 Identification, assessment and monitoring: 24  What is the validity and reliability of the instruments, tools and methods used to identify 25 the early onset of eating disorders in populations and in clinical samples? 26  What is the validity and reliability of the instruments, tools and methods used to assess 27 and monitor eating disorders? 28  2 Interventions to treat eating disorders in children, young people and adults: 29  Does any group or individual psychological intervention produce benefits/harms on the 30 specified outcomes in people with eating disorders compared with treatment as usual, 31 wait-list controls or another psychological intervention? 32  Does any psychological intervention involving families and carers produce benefits/harms 33 on specified outcomes in people with eating disorders? 34  Does any pharmacological intervention produce benefits/harms on specified outcomes in 35 people with eating disorders? 36  Does any nutritional intervention produce benefits/harms on specified outcomes in people 37 with eating disorders? 38  Do physical interventions, such as transcranial magnetic stimulation or physiotherapy, 39 produce benefits/harm on specified outcomes in people with eating disorders? 40  3 The management of the physical symptoms and negative after effects of eating 41 disorders, including weight management: 42  Does any method of managing the physical symptoms and negative after effects of eating 43 disorders, such as low bone mineral density, produce benefits/harms on specified 44 outcomes in people with eating disorders? 45  Eating disorders: recognition and treatment Scope © National Institute for Health and Care Excellence 2017. All rights reserved 8  4 Interventions for eating disorders where there is comorbidity with other mental health 1 or physical health problems: 2  Does any intervention for other mental and physical health problems in people with eating 3 disorders (for example, interventions for diabetes) affect the presentation or management 4 of specified outcomes in people with eating disorders? 5  5 Interventions to support families and carers: 6  Does any intervention aimed at supporting families and carers produce benefits/harms on 7 specified outcomes in families and carers of people with eating disorders? 8  6 Organisation and delivery of services: 9  Does the setting (inpatient, outpatient or other specific setting) for treating eating disorders 10 produce benefits/harms in people with eating disorders? 11  Do different ways of coordinating care produce benefits/harms for people with eating 12 disorders? 13  7 Consent and compulsory treatment: 14  What factors/indicators should be considered when assessing whether a person with an 15 eating disorder should be admitted for compulsory treatment (including any form of 16 restrictive interventions usually implemented in refeeding). 17 1.6 Main outcomes 18 The main outcomes that will be considered when searching for and assessing the evidence 19 are: 20  All-cause mortality. 21  Remission and long-term recovery. 22  Relapse. 23  General functioning, measured by return to normal activities, or by general mental health 24 functioning measures such as Global Assessment of Functioning (GAF). 25  Cognitive distortion (evidence of ongoing preoccupation with weight/shape/food/eating). 26  Weight and body mass index. 27  Family functioning. 28  Quality of life. 29  Cost effectiveness. 30  Resource use. 31  Growth/bone density. 32  Service user experience. 33  Eating disorders: recognition and treatment Scope © National Institute for Health and Care Excellence 2017. All rights reserved 9 2 Links with other NICE guidance and NICE 1 pathways 2 2.1 NICE guidance 3 NICE guidance that will be updated by this guideline 4 This guideline will replace the existing NICE guideline on eating disorders (CG9). 5 NICE guidance about the experience of people using NHS services 6 NICE has produced the following guidance on the experience of people using the NHS. This 7 guideline will not include additional recommendations on these topics unless there are 8 specific issues related to eating disorders. 9  Patient experience in adult NHS services (2012) NICE guideline CG138 10  Service user experience in adult mental health (2011) NICE guideline CG136 11  Medicines adherence (2009) NICE guideline CG76 12 2.2 NICE Pathways 13 When this guideline is published, the recommendations will be added to NICE Pathways. 14 NICE Pathways bring together all related NICE guidance and associated products on a topic 15 in an interactive topic-based flow chart. 16 A draft pathway outline on eating disorders, based on this scope, is included below. It will be 17 adapted and more detail added as the recommendations are written during guideline 18 development. 19 20 The pathway will link to the NICE pathways on nutrition support in adults and behaviour 21 change. 22  Eating disorders: recognition and treatment Scope © National Institute for Health and Care Excellence 2017. All rights reserved 10 3 Context 1 3.1 Key facts and figures 2  Estimates of the incidence and prevalence of eating disorders vary, depending on the 3 population studied and the methodology. The prevalence of anorexia nervosa is estimated 4 to be about 0.3% across all age groups and up to 1.7% in adolescence; 90% of people 5 diagnosed with anorexia nervosa are women. The annual incidence in primary care for 6 anorexia nervosa is 14 per 100,000 per year in women. The prevalence of bulimia 7 nervosa is estimated to be about 0.8%. Again, 90% of people diagnosed with bulimia 8 nervosa are women. Binge eating disorder has a prevalence of 2.2% and a female to 9 male ratio of around 3:1. 10  Other eating disorders include 'atypical eating disorders' (also known as eating disorders 11 not otherwise specified [EDNOS] and other specified feeding and eating disorders 12 [OSFED]). These include subthreshold cases of anorexia nervosa, bulimia nervosa and 13 binge eating disorder, and other specified disorders (for example, night eating syndrome 14 and purging disorder). Although they are less well researched, such atypical cases are 15 estimated to make up approximately 50% of all cases of eating disorder. 16  Because eating disorders are less common in men, and are more likely to be 'atypical', 17 they can go undetected. Eating disorders are also underdiagnosed in people of normal 18 weight, people who are overweight and in black, Asian and minority ethnic group 19 populations, despite similar prevalence rates. 20  Severe eating disorders can result in long-term ill health or death 21 The existing NICE guideline on eating disorders (CG9) was 11 years old in January 2015 22 and was developed before the publication of the 2004 guidelines manual. Consequently it 23 contains no review protocols, no clear methodology of how evidence synthesis was 24 achieved, no evidence tables, and no statement linking the evidence to the 25 recommendations or documentation of decision-making. In addition, an arbitrary lower age 26 limit of 8 years was used for the guideline population. 27 We are updating CG9 using the methods and processes set out in 2014 in Developing NICE 28 guidelines: the manual. The updated guideline will cover the identification, treatment and 29 management of eating disorders as defined in the World Health Organization's International 30 Classification of Diseases (ICD) and the American Psychiatric Association's Diagnostic and 31 Statistical Manual of Mental Disorders (DSM–5). These include anorexia nervosa, bulimia 32 nervosa, binge eating disorder and eating disorders generally called 'atypical eating 33 disorders'. 34 The updated guideline will be used to develop a NICE quality standard. 35 3.2 Current practice 36 Current practice is for healthcare professionals and service users with eating disorders to 37 refer to the existing NICE guideline on eating disorders (CG9). However, there is new 38 evidence that may change current recommendations on psychotherapy. 39 3.3 Policy, legislation, regulation and commissioning 40 Legislation, regulation and guidance 41  The Children Act 1989 42  The Mental Health Act 1983 43  The Mental Capacity Act 2005 44  Eating disorders: recognition and treatment Scope © National Institute for Health and Care Excellence 2017. All rights reserved 11  The Human Rights Act 1998. 1 Commissioning 2  Guidance for commissioners of eating disorder services. Joint Commissioning Panel for 3 Mental Health, 2013. 4 Further information 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23  Eating disorders: recognition and treatment Declarations of Interest © National Institute for Health and Care Excellence 2017. All rights reserved 12 Appendix B: Declarations of Interest 1 Guideline Committee 2 Name Job title and organisation Declaration of interest Type of interest Action taken Anthony Bateman Consultant Psychiatrist and Psychotherapist and Honorary Senior Lecturer. Visiting Professor in the Psychoanalysis Unit at University College London. None n/a None Jane Dalgliesh Nurse Practitioner/Team Manager/Head of Service Eating Disorders Service, South Essex University Foundation Trust None n/a None Ivan Eisler Emeritus Professor of Family Psychology and Family Therapy, Kings College Institute of Psychiatry, Psychology and Neuroscience. Consultant Clinical Psychologist and Joint Head of Child and Adolescent Eating Disorders Service, South London and Maudsley NHS Foundation Trust. Lead for Psychological Treatments, CAMHS, South London and Maudsley NHS Foundation Trust. Published a significant number of academic papers/chapters on psychological treatments for eating disorders. This includes papers on the use of family interventions and published studies on psychodynamic psychotherapy, CBT and cognitive analytic therapy. Also published researched and expressed opinions on specialist and non-specialist services for child and adolescent eating disorders. Personal, non- financial, specific None Ivan Eisler Emeritus Professor of Family Psychology and Family Therapy, Kings College Institute of Psychiatry, Psychology and Neuroscience. Consultant Clinical Psychologist and Joint Head of Child and Adolescent Eating Disorders Service, South London and Maudsley NHS Foundation Trust. Member of the curriculum group for Systemic Family Practice for the Children’s and Young People’s Increasing Access to Psychological Treatments (CYP IAPT) and co-writer of the CYP IAPT specialist ED training module. Evidence has been submitted to the Personal, non- financial, specific None  Eating disorders: recognition and treatment Declarations of Interest © National Institute for Health and Care Excellence 2017. All rights reserved 13 Name Job title and organisation Declaration of interest Type of interest Action taken Lead for Psychological Treatments, CAMHS, South London and Maudsley NHS Foundation Trust. House of Commons Health Select Committee CAMHS Inquiry as well as to the NHS England London Region Group on the organisation of Child and Adolescent Eating Disorders Services. Christopher Fairburn Welcome Principal Research Fellow, University of Oxford. Professor of Psychiatry, University of Oxford. Honorary Consultant Psychiatrist, Oxford Health NHS Foundation Trust. Governor, MQ – Research for Mental Health. Governor, Oxford Mindfulness Foundation Author of research papers, review articles and books that have commented on the effectiveness of various treatments for eating disorders. Royalties received from publishers of the books concerned. Personal, financial, specific None Christopher Fairburn Welcome Principal Research Fellow, University of Oxford. Professor of Psychiatry, University of Oxford. Honorary Consultant Psychiatrist, Oxford Health NHS Foundation Trust. Governor, MQ – Research for Mental Health. Governor, Oxford Mindfulness Foundation Co-author of one of the studies included in the evidence review on comorbidities of eating disorders and another study included in the assessment and monitoring review. Personal, non- financial, specific Withdrew from discussion of evidence and only answered questions in relation to the study for clarity Christopher Fairburn Welcome Principal Research Fellow, University of Oxford. Professor of Psychiatry, University of Oxford. Honorary Consultant Psychiatrist, Oxford Health NHS Foundation Trust. Governor, MQ – Research for Mental Health. Governor, Oxford Mindfulness Foundation Co-author of a study included in the evidence review on bulimia nervosa. Personal, non- financial, specific Withdrew from discussion of evidence and only answered questions in relation to the study for clarity Christopher Fairburn Welcome Principal Research Fellow, University of Oxford. Author of CBT-ED manuals related to the Personal, non- financial, specific Withdrew from discussion of  Eating disorders: recognition and treatment Declarations of Interest © National Institute for Health and Care Excellence 2017. All rights reserved 14 Name Job title and organisation Declaration of interest Type of interest Action taken Professor of Psychiatry, University of Oxford. Honorary Consultant Psychiatrist, Oxford Health NHS Foundation Trust. Governor, MQ – Research for Mental Health. Governor, Oxford Mindfulness Foundation psychological interventions reviews. evidence and only answered questions in relation to the study for clarity Christopher Fairburn Welcome Principal Research Fellow, University of Oxford. Professor of Psychiatry, University of Oxford. Honorary Consultant Psychiatrist, Oxford Health NHS Foundation Trust. Governor, MQ – Research for Mental Health. Governor, Oxford Mindfulness Foundation Invited to be part of a group looking at completing an NMA for anorexia nervosa. Personal, non- financial, specific None Christopher Fairburn Welcome Principal Research Fellow, University of Oxford. Professor of Psychiatry, University of Oxford. Honorary Consultant Psychiatrist, Oxford Health NHS Foundation Trust. Governor, MQ – Research for Mental Health. Governor, Oxford Mindfulness Foundation Held (paid and unpaid) training workshops for clinicians on eating disorders; on eating disorder treatment in general; and on specific treatments for eating disorders (CBT; IPT; guided self-help). Personal, financial, specific None Christopher Fairburn Welcome Principal Research Fellow, University of Oxford. Professor of Psychiatry, University of Oxford. Honorary Consultant Psychiatrist, Oxford Health NHS Foundation Trust. Governor, MQ – Research for Mental Health. Governor, Oxford Mindfulness Foundation Funding from Welcome Trust to develop an online means of training therapists in a specific treatment for eating disorders, CBT-E, and in a treatment for depressions (behavioural activation). The training is cost-free Non-personal, financial, specific None  Eating disorders: recognition and treatment Declarations of Interest © National Institute for Health and Care Excellence 2017. All rights reserved 15 Name Job title and organisation Declaration of interest Type of interest Action taken Christopher Fairburn Welcome Principal Research Fellow, University of Oxford. Professor of Psychiatry, University of Oxford. Honorary Consultant Psychiatrist, Oxford Health NHS Foundation Trust. Governor, MQ – Research for Mental Health. Governor, Oxford Mindfulness Foundation Author of a book for sufferers from eating disorders (Overcoming Binge Eating). Receive royalties from the publisher. Personal, financial, specific None Lee Hudson Consultant Paediatrician Great Ormond St Hospital, London. Consultant Paediatrician, Ellen Mead Eating Disorders Unit, Holcombe Hill, London. Honorary Senior Lecturer, University College London Institute of Child Health. Co-author of one of the studies included in the physical complications review. Personal, non- financial, specific Withdrew from discussion of evidence and only answered questions in relation to the study for clarity Lee Hudson Consultant Paediatrician Great Ormond St Hospital, London. Consultant Paediatrician, Ellen Mead Eating Disorders Unit, Holcombe Hill, London. Honorary Senior Lecturer, University College London Institute of Child Health. Co-lead of the MARSIPAN group Personal, non- financial, specific Withdrew from discussion of evidence and only answered questions in relation to the study for clarity Lee Hudson Consultant Paediatrician Great Ormond St Hospital, London. Consultant Paediatrician, Ellen Mead Eating Disorders Unit, Holcombe Hill, London. Honorary Senior Lecturer, University College London Institute of Child Health. Work privately as a paediatrician in eating disorders in a private eating disorders clinic Personal, financial, specific None Mike Hunter Consultant Psychiatrist Clinical Director (Inpatient Services) and Associate Medical Director (Research and Strategy) Sheffield Health and Social None n/a None