INTERNATIONAL CONSENSUS BEST PRACTICE …

1 best PRACTICE FOR THE MANAGEMENT OF LYMPHOEDEMAINTERNATIONAL CONSENSUSLYMPHOEDEMA FRAMEWORKAN INTERNATIONAL PERSPECTIVEBEST PRACTICE FOR THE MANAGEMENT OF LYMPHOEDEMAS upported by an educationalgrant from views expressed in thispublication are those of theauthors and do not necessarilyreflect those of images in Figures 2, 16, 18and 23 are courtesy ofProfessor PS Mortimer. MEP LTD, 2006 ISBN 0-9547669-4-6 Published byMedical Education Partnership(MEP) Ltd53 Hargrave RoadLondon N19 5SH, UKTel: +44 (0)20 7561 5400 Email: rights reserved. No reproduction, copy ortransmission of this publication may be madewithout written permission. No paragraph ofthis publication may be reproduced, copiedor transmitted save with written permissionor in accordance with the provisions of theCopyright, Designs & Patents Act 1988 orunder the terms of any licence permittinglimited copying issued by the CopyrightLicensing Agency, 90 Tottenham Court Road,London W1P CONSULTANT EDITORC hristine Moffatt, Professor of Nursing and Co-director, Centre for Research andImplementation of Clinical PRACTICE , Faculty ofHealth and Social Sciences, Thames ValleyUniversity, London, UKCONSULTANT EDITORSD ebra Doherty, Senior Lecturer and Clinical NurseSpecialist in Lymphoedema;Phil Morgan, Post-doctoral Research Fellow.

2 Centre for Research and Implementation of ClinicalPractice, Faculty of Health and Social Sciences,Thames Valley University, London, UKTHE LYMPHOEDEMA FRAMEWORKThe Lymphoedema Framework is a UK basedresearch partnership launched in 2002 that aimsto raise the profile of lymphoedema and improvestandards of care through the involvement ofspecialist practitioners, clinicians, patient groups,healthcare organisations, and the wound careand compression garment Framework SecretariatCentre for Research and Implementation ofClinical PRACTICE Thames Valley University, 32-38 Uxbridge Road,London, UKTel: +44 (0)20 280 5050. Web: Lymphoedema Framework would like tothank the following for their valuableparticipation in the CONSENSUS process thatformed the basis of this document:All involved in the Working GroupsBritish Lymphology Society (BLS)Centre for Research and Implementation ofClinical PRACTICE , Thames Valley UniversityIndustry Consortium*King s FundLymphoedema Support Network (LSN)Members of the INTERNATIONAL Advisory BoardParticipating UK NHS Primary Care Trusts*List provided in Appendix 1 Managing Editor Lisa MacGregorHead of Wound Care Suzie CalneEditorial Project Manager Kathy DayDesign and layout Jane WalkerPrinted by Viking Print Services, UKTo reference this document cite the following:Lymphoedema Framework.

3 best PRACTICE for theManagement of London: MEP Ltd, DOCUMENT HAS BEEN ENDORSED BY:American Society of Lymphology (ASL, USA)British Lymphology Society (BLS, UK)Deutsche Gesellschaft f r Lymphologie (DGL,Germany)Fysioterapeuters Faggruppe for Lymf behandling(FFL, Denmark)Japanese Society of Lymphology (JSL, Japan)Lymphedema Association of North America(LANA, USA)Lymphoedema Support Network (LSN, UK)MLDUKN ational Lymphedema Network (NLN, USA)Nederlands Lymfoedeem Netwerk (NLNet, TheNetherlands)Norsk Lymf demforening (NLF Norsk, Norway) sterreichische Lymph-Liga (Austria)Professor C Campisi, President of the ItalianSociety of Lymphangiology (SIL) and of the Latin-Mediterranean Chapter of the InternationalSociety of Lymphology (ISL)Professor N Piller on behalf of the LymphoedemaAssociation of Australia (LAA, Australia)Schweizerische Gesellschaft f r Lymphologie(SGL, Switzerland)Sociedad Espa ola de Rehabilitaci n y MedicinaFisica (SERMEF, Spain)Soci t Fran aise de Lymphologie (SFL, France)Svensk F rening f r Lymfologi (SFL, Sweden)

4 Svenska dem F rbundet (Sweden)The editors of the Lymphoedema Frameworkrecognise that the standards of lymphoedemacare advocated are based on the UK model andmay not be adaptable to the healthcare systemsof all other countries. Some of the organisationslisted above endorse the document as aprofessional resource to advance lymphoedemadiagnosis and OF RECOGNITIONThe American Society of Lymphology (ASL, USA)and its National and INTERNATIONAL BoardMembers support the conclusion of this doc-ument that standards of education and treatmentmust be established for the benefit of patientswith lymphoedema and the physicians chargedwith overseeing their therapist and medical INTERNATIONAL Society of Lymphology (ISL)recommends the Lymphoedema Frameworkdocument as a valuable, useful, and illustrativeeducational resource for general practitionersand the public and as a thoughtful, detailedcompendium of established practices within theUnited Lymphatic Research Foundation (LRF, USA)

5 Endorses the concept of creating a framework for the clinical care of patients withlymphoedema and congratulates thisextraordinary effort to do PRACTICE FOR THE MANAGEMENT OF LYMPHOEDEMAINTRODUCTIONIDENTIFYING THE PATIENT AT RISKASSESSMENTTREATMENT DECISIONSSKIN CARE AND CELLULITIS/ERYSIPELASLYMPHATIC MASSAGEINTERMITTENT PNEUMATIC COMPRESSIONMULTI-LAYER INELASTIC LYMPHOEDEMA BANDAGINGCOMPRESSION GARMENTSEXERCISE/MOVEMENT AND ELEVATIONPSYCHOSOCIAL SUPPORTPALLIATIVE CARESURGERYOTHER TREATMENTSAPPENDICESREFERENCES1361524293 1323947484950505253 best PRACTICE FORTHE MANAGEMENT OF LYMPHOEDEMAINTERNATIONAL CONSENSUSBEST PRACTICE FOR THE MANAGEMENT OF LYMPHOEDEMAD avid Addiss, medical Epidemiologist, ParasiticDiseases Branch, Centers for Disease Control andPrevention, Atlanta, USAJane Armer, Professor, Sinclair School of Nursing;Director, Nursing Research, Ellis Fischel CancerCenter; Co-director, Health CommunicationResearch Center, University of Missouri-Columbia,Columbia, USAR ebecca Billingham, Lymphoedema NurseSpecialist, Hartshill Orthopaedic and Surgical Unit,University Hospital of North Staffordshire, Stoke-on-Trent, UK.

6 Chair, British Lymphology Society H kan Brorson, Consultant, The LymphoedemaUnit, Department of Plastic and ReconstructiveSurgery, Lund University, Malm UniversityHospital, Malm , SwedenCorradino Campisi, Professor of General Surgery,Director of Section of Lymphology andMicrosurgery, Department of Surgery, Unit ofLymphatic Surgery, University Hospital SanMartino, Genoa, ItalyRobert J Damstra, Dermatologist, Department ofDermatology, Phlebology and Lymphology, NijSmellinghe Hospital, Drachten, The NetherlandsJudit Dar czy, Professor, Department ofDermatology and Lymphology, St StephanHospital, Budapest, HungaryJoseph Feldman, President, LymphologyAssociation of North America, Wilmette, USAE telka F ldi, medical Director, F ldiklinik,Hinterzarten, GermanyIsabel Forner Cordero, Physical Medicine andRehabilitation Specialist, Lymphoedema Unit,Hospital Universitario La Fe, Valencia, SpainVaughan Keeley, Consultant in PalliativeMedicine, Derby Hospitals Foundation Trust,Derby, UKJohn Macdonald, FACS President, Associationfor the Advancement of Wound Care,Department of Dermatology and CutaneousSurgery, Miller School of Medicine, University ofMiami, Miami, USAP eter Mortimer, Professor of DermatologicalMedicine, Cardiac and Vascular Sciences(Dermatology Unit), St George's, University ofLondon, London, UKSR Narahari, Director, Institute of AppliedDermatology, Kasaragod, Kerala, IndiaMoriya Ohkuma, Professor, Department ofDermatology, Sakai Hospital, Kinki University,School of Medicine, Osaka, JapanHugo Partsch, Professor of Dermatology, medical University, Vienna, AustriaNeil Piller, Professor, Department of Surgery,School of Medicine, Flinders medical Centre,Bedford Park.

7 Director, LymphoedemaAssessment Clinic, Flinders Surgical Oncology,Flinders medical Centre, Bedford Park, SouthAustraliaIsabelle Qu r , Professor, Vascular Medicine,H pital St Eloi, Montpellier, FranceStanley Rockson, Associate Professor ofMedicine; Chief of Consultative Cardiology;Director, Stanford Program for Atherosclerosisand Cardiovascular Therapies; Director StanfordCenter for Lymphatic and Venous Disorders,Stanford University School of Medicine, Stanford,California, USAK ristin Ruder, Specialist in OncologicalPhysiotherapy and Lymphoedema, T nsbergLymf dem Klinik/Skandinavisk Forum forLymfologi, T nsberg, NorwayTerence Ryan, Emeritus Professor ofDermatology, Oxford University and OxfordBrookes University, Oxford, UKWinfried Schneider, medical Director, Klinik Haus am Schlo park , Bad Berleburg, GermanyMargaret Sneddon, Macmillan Senior UniversityTeacher, Nursing and Midwifery School,University of Glasgow, Glasgow, UKAnna Towers, Director, Palliative Care Medicine,Department of Oncology, McGill University,Montreal, CanadaSt phane Vignes, Internist, Head, LymphologyUnit, H pital Cognacq-Jay, Paris.

8 FranceINTERNATIONALADVISORY BOARDINTRODUCTIONBEST PRACTICE FOR THE MANAGEMENT OF LYMPHOEDEMA 1 Lymphoedema is a progressive chroniccondition that affects a significant number of people and can have deleterious effects onpatients' physical and psychosocial though it may be greatly ameliorated byappropriate management, many patientsreceive inadequate treatment, are unawarethat treatment is available or do not knowwhere to seek help. Several recent systematicreviews have highlighted the distinct lack ofevidence for the optimal management oflymphoedema1-3. By presenting a model forbest PRACTICE in lymphoedema in adults, thisdocument aims to raise the profile of thecondition and improve the care that THIS DOCUMENTThe guidance provided here was derivedfrom a UK national CONSENSUS on standardsof PRACTICE for people who are at risk of orwho have lymphoedema (Box 1). Theconsensus process (Box 2) was launched in2002 and was driven by the LymphoedemaFramework with input from national patientsupport groups, patients withlymphoedema, national professionallymphoedema groups, clinical experts andindustry (Appendix 1).

9 Production of thisdocument included review by aninternational panel of experts andendorsement by key national recommendations resulting from theconsensus approach are included whererelevant. Each recommendation has beenclassified according to the UK NHS HealthTechnology Assessment model for guidelinedevelopment (Box 3) document will be reviewed andupdated after five years. Key referenceshave been included; a complete list of thereferences used in the preparation of thetext can be found at: 1: Identification of people atrisk of or with lymphoedemaSystems to identify people at risk of orwith lymphoedema, regardless of cause,will be implemented and monitored toensure that patients receive high qualityeducation and lifelong careStandard 2: Empowerment of people atrisk of or with lymphoedema Individual plans of care that foster self-management will be developed inpartnership with patients at risk of orwith lymphoedema (involving relativesand carers where appropriate), in anagreed format and languageStandard 3.

10 Provision of lymphoedemaservices that deliver high quality clinicalcare that is subject to continuousimprovement and integratescommunity, hospital and hospice basedservicesAll people at risk of or withlymphoedema will have access to trainedhealthcare professionals, includinglymphoedema specialists, who will workto agreed standards for comprehensiveongoing assessment, planning,education, advice, treatment andmonitoring. Care will be of a highstandard and subject to continuousquality improvementStandard 4: Provision of high qualityclinical care for people withcellulitis/erysipelasAgreed protocols for the rapid andeffective treatment of cellulitis/erysipelas, including prevention ofrecurrent episodes, will beimplemented and monitored byhealthcare professionals who havecompleted recognised training in thissubjectStandard 5: Provision of compressiongarments for people withlymphoedemaAgreed protocols for assessment forand the provision of compressiongarments for people withlymphoedema, or where warranted,those at risk of lymphoedema, will beimplemented and monitoredStandard 6.