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Best Practice Guidelines WUK BPG Best Practice Guidelines Te management of lipoedema 2017 Diagnosis and assessment Lipoedema management Life style support and self care Compression therapy Non-surgical and surgical interventions BEST PRACTICE GUIDELINES: EXPERT WORKING GROUP: THE MANAGEMENT OF Tanya Coppel, Specialist Lymphoedema Physiotherapist, LIPOEDEMA Belfast Health & Social Care Trust, Belfast PUBLISHED BY: Julie Cunneen, Macmillan Clinical Lead for Wounds UK Lymphoedema Service/Nurse Consultant, Moseley Hall Hospital, Birmingham A division of Omniamed, 1.01 Cargo Works Sharie Fetzer, Chair, Lipoedema UK, London 1–2 Hatfields, London SE1 9PG, UK Tel: +44 (0)203735 8244 Kristiana Gordon, Consultant in Dermatology and Web: www.wounds-uk.com Lymphovascular Medicine, St George’s Hospital, London Denise Hardy, Lymphoedema/Lipoedema Nurse Consultant, Kendal Lymphology Centre, Kendal, Cumbria; Nurse Adviser, Lipoedema UK/ Lymphoedema Support Network (LSN), Cumbria; Co- Chair of the Expert Working Group © Wounds UK, March 2017 Tis document has been developed Kris Jones, Patient; Joint Managing Director & Nurse by Wounds UK and is supported byActiva Healthcare, BSN Consultant, LymphCare UK; Nurse Consultant, Medical, Haddenham Healthcare, Lipoedema UK Lipoedema UK, medi UK, Sigvaris and Talk Lipoedema. Angela McCarroll, Trustee, Talk Lipoedema; Patient, Northern Ireland Caitriona O’Neill, Lymphoedema Care Lead Nurse, Accelerate CIC, London Sara Smith, Senior Lecturer in Dietetics and Nutrition, Queen Margaret University, Edinburgh Cheryl White, Lymphoedema Specialist Physiotherapist, Cheshire Anne Williams, Lymphoedema/Lipoedema Nurse Consultant, Lecturer in Nursing, Queen Margaret University, Edinburgh; Trustee, Talk Lipoedema, Edinburgh; Co-Chair of the Expert Working Group Tis publication was coordinated by Wounds UK with the Expert Working Group. Te views REVIEW PANEL: Rebecca Elwell, Macmillan Lymphoedema CNS, Univer- presented in this document are sity Hospitals of North Midlands NHS Trust, Staffordshire the work of the authors and do not necessarily reflect the views of the Peter Mortimer, Professor of Dermatological Medicine, supporting companies. Consultant Dermatologist, St George’s University of London How to cite this document: Wounds UK. Best Practice Alex Munnoch, Consultant Plastic Surgeon and Clinical Guidelines: The Management of Lead, Ninewells Hospital, Dundee Lipoedema. London: Wounds UK, 2017. Dirk Pilat, General Practitioner; Medical Director for Available to download from: ELearning at the Royal College of General Practitioners www.wounds-uk.com (RCGP), London Melanie Tomas MBE, National Clinical Lead for Lymphoedema, NHS Wales and the Lymphoedema Network Wales INTRODUCTION Developing best practice guidelines for the management of lipoedema People with lipoedema in the UK face Te meeting participants recognised a significant challenges. Many are not general paucity of clinical evidence relating GUIDE TO USING THIS recognised by healthcare professionals as to the management of lipoedema. Te DOCUMENT Each section of the having the condition or are misdiagnosed. conclusions of the meeting formed the basis document helps Awareness of lipoedema among medical for this document, which draws, where healthcare practitioners practitioners is poor, and little clinical possible, on relevant literature. Where to provide appropriate research is focused on the condition. To evidence is lacking, expert opinion has been support and effective date, no good quality guidelines for the used to inform the guidelines and make treatment and care for management of the disease have been recommendations. Te content was subject patients with lipoedema. published, resulting in inconsistent and to review by the Expert Working Group and Te key points for each frequently inappropriate care for people additional reviewers before being finalised. section summarise with lipoedema. the information most Tis document will be of interest to anyone relevant to clinical Even when lipoedema is diagnosed correctly, involved in delivering support and clinical practice accessing appropriate care within the NHS services to people with lipoedema, including may be difficult because of poor general practitioners, lymphoedema understanding of treatment and referral therapists, community nurses, plastic routes, and geographical variations in clinic surgeons, dietitians, commissioners, availability, funding and capacity. third-sector organisations and more. Lipoedema is a chronic, incurable disease Tere is still a considerable amount to learn that can have a severe impact on quality of about lipoedema. Undoubtedly, the next few life, and physical and psychosocial years will bring rapid advances in wellbeing. Some patients are so seriously understanding of the pathophysiology of affected that they lead very restricted lives, lipoedema and the most effective ways of sometimes to the extent of being unable to managing the condition. As a result, the leave their homes. Te complexity of the Group recognises that this document is likely issues faced by patients with lipoedema to need to be reviewed within three years. necessitates interprofessional, multidisciplinary care with an emphasis on Te Group hopes that the document will be supporting self management and working in useful to people with lipoedema, and the partnership with the person to identify wide range of professionals who have realistic goals and to manage expectations. contact with them. Tis document is an early step towards achieving tangible Tese best practice guidelines on lipoedema benefits for patients, enhancing recognition were inspired by a group of clinicians who and diagnosis of the condition by first started discussing the need for clear professionals and the public, improving guidance in 2015. Te discussions access to best practice management, and culminated in a meeting in September 2016 providing scope for future development of that had the specific aim of developing lipoedema services in the UK. guidelines on management that improve the lives and outcomes of people with Anne Williams and lipoedema. Te meeting was ground Denise Hardy breaking: not only did it bring together key Co-Chairs opinion leaders and experts involved in the treatment of lipoedema from all around the UK, but, significantly, it also included people with lipoedema representing UK third sector organisations. BEST PRACTICE GUIDELINES: THE MANAGEMENT OF LIPOEDEMA 3 EPIDEMIOLOGY AND PATHOPHYSIOLOGY OF LIPOEDEMA SECTION 1: EPIDEMIOLOGY AND PATHOPHYSIOLOGY OF LIPOEDEMA Lipoedema was first described in 1940 and suggests: cases may be ‘hidden’ because of Box 1. Synonyms for is a chronic incurable condition involving a their mild nature or because the person is lipoedema (Schmeller & pathological build-up of adipose tissue reluctant to contact health services. Other Meier-Vollraith, 2007; (Allen & Hines, 1940). It typically affects the cases may be unrecognised or misdiagnosed Langendoen et al, 2009; thighs, buttocks and lower legs, and by health services. Common misdiagnoses Herbst 2012a; Cornely, sometimes the arms, and may, although not include obesity or lymphoedema (Box 2) 2014) always, cause considerable tissue (Goodliffe et al, 2013), although both ■ Adiposalgia enlargement, swelling and pain. It may conditions may co-exist with lipoedema. ■ Adiopoalgesia significantly impair mobility, ability to ■ Lipalgia perform activities of daily living, and Cause ■ Lipedema (American psychosocial wellbeing. Current Te precise mechanisms responsible for the spelling) conservative management involves development of lipoedema are unknown, ■ Lipohyperplasia dolorosa ■ encouraging self-care, managing symptoms, but it is likely that multiple factors are Lipohypertrophy dolorosa improving functioning and mobility, involved (Okhovat & Alavi, 2014). ■ providing psychosocial support, and Lipomatosis dolorosa of the legs preventing deterioration in physical and Lipoedema often first presents during ■ Painful column legs mental health and wellbeing. puberty, although oral contraceptive use, ■ Painful fat syndrome pregnancy and the menopause also appear ■ Riding breeches Lipoedema is predominantly a chronic to be triggers. Tese observations suggest syndrome adipose tissue disorder (the word lipoedema that hormonal change may be involved ■ Stovepipe legs. means ‘fat swelling’), with clinically apparent in initiating the characteristic build-up of oedema due to fluid accumulation in the adipose tissue (Fonder et al, 2007; Bano et tissues occurring as a secondary feature in al, 2010; Godoy et al, 2012). Onset of the some individuals (Todd, 2010; Herbst, disease after periods of significant weight Box 2. Lymphoedema and 2012a; Reich-Schupke et al, 2013; Herbst et gain have also been reported (personal lipoedema (Harwood et al, 2015). Although most commonly called communication, K Gordon). al, 1996; Lymphoedema lipoedema, the condition has a variety of Framework, 2006; Goodliffe et al, 2013) other names (Box 1). Tere is also evidence of a genetic predisposition to lipoedema. A family Patients with lipoedema Prevalence history of the condition has been found may be misdiagnosed as Lipoedema almost exclusively affects in 15%–64% of patients (Harwood et having lymphoedema. women, but a few cases have been reported al, 1996; Child et al, 2010; Schmeller & Lymphoedema results in men (Chen et al, 2004; Langendoen et al, Meier-Vollrath, 2007). Te genetic variants from malfunction of the 2009). Relatively little epidemiological involved have not been identified fully, lymphatic system, whereas
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