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Strategy for lymphoedema care

• British Lymphology Society •

Introduction

  • Lymphoedema is chronic swelling due primarily to a failure of lymph drainage. It arises from a congenitally determined lymphatic abnormality or from damage to lymphatic structures by inflammation, including that caused by infection, tumour, surgery or radiation. It is essentially incurable but the major manifestations, namely swelling and infection (cellulitis), can be improved and controlled. This document establishes minimum standards of care that should be offered by any lymphoedema service in the UK and Ireland

Objective

  • To ensure that any lymphoedema sufferer has access to the correct advice and treatment, which fulfils a basic minimum standard

Background

  • Lymphoedema differs from all other forms of chronic oedema, in being due not solely to water accumulation in the tissues, but also to a solid component comprising fibrosis, fat and inflammation. It is the solid component in the swelling that makes treatment so difficult. In addition, most of the underlying causes are irreversible
  • Traditionally, lymphoedema has been managed surgically by reducing (debulking) operations, or more recently by microvascular surgery (lympho-venous shunts). Unfortunately, only in a very small number of cases does surgery produce any long-lasting benefit, and it is generally considered no better than conservative treatment.
  • Although research is ongoing, drug therapy remains of limited value. As a result, patients are often told that nothing can be done and no positive steps are taken to improve matters. A nihilistic attitude then prevails from the medical profession and a handicapped and disillusioned patient results

Treatment

Minimum provision of care

  • Medical (conservative) treatment can, in the majority of cases, improve quality of life considerably. Central to management is getting the patient to understand his or her condition and know what not to do. Only then can a high level of motivation and compliance with treatment be generated
  • Maintenance therapy encompasses four components:
    • skin care to maintain a good tissue condition and reduce the risk of infection
      • cellulitis: due to the important role of the lymph system in immune response, patients with lymphoedema are vulnerable to infection. The effects can be particularly unpleasant and can include flu-like symptoms, a rash, pain and increased swelling. Prompt administration of antibiotics is essential. A prophylactic approach should be adopted for recurrent attacks
    • external support/compression in the form of elastic compression garments to reduce new lymph formation and enhance lymph drainage by improving muscle pump efficiency
    • a programme of exercise and movement to maximise lymph drainage
    • simple lymphatic drainage (SLD) is based on the principles of manual lymphatic drainage (MLD) (see below). It involves the use of simple hand movements and is designed to be easily accessible to patients and their relatives. It can be carried out by the patient, carer, or therapist and is generally used twice daily
  • Reassessment and monitoring of progress by objective means, e.g. limb volume measurement, is essential for proper management

Strategy for lymphoedema care continued

Additional treatment

  • Decongestive lymphatic therapy (DLT) For moderate to severe forms of lymphoedema, it is desirable to employ an intensive phase of DLT on a daily basis over 2–4 weeks. DLT combines a package of treatment modalities, e.g. multi-layer lymphoedema bandaging (MLLB), MLD, skin care and exercise. This aims to bring the condition under control by facilitating a reduction in limb volume, restoring shape and improving both skin condition and tissue status, thus improving long-term results. Treatment modalities are prescribed according to the patient's needs and offered by a trained therapist. Following DLT, patients should be re-entered into a maintenance therapy programme
  • MLD is a very gentle type of skin massage carried out by a trained therapist. The techniques are designed to move the skin in specific directions, based on the underlying structure and physiology of the lymphatic system. MLD may be given daily or sometimes twice daily. A course of therapy may last ≥2 weeks and may be repeated at intervals of 3 months to 1 year
  • MLLB Bandages are applied within a multi-layer system. They provide a semi-rigid encasement of the tissues
  • Sequential pneumatic compression has been established for some years. Proof of effectiveness is lacking and care needs to be taken in case fluid is forced too rapidly from the limb into the adjacent part of the body
  • Surgery may still be desirable in certain circumstances, e.g. eyelid or genital swelling, extensive weeping lymphangiectasia, coexistent superficial venous incompetence, or where a limb is grossly swollen or infected. In these situations, referral to a surgeon experienced in the particular requirements of lymphoedema is recommended

Patients' needs

  • The patient with lymphoedema should receive:
    • an explanation of the likely underlying cause, i.e. proper diagnosis, and advice on existing treatment from a qualified therapist
    • the provision of care according to the minimum standards outlined
    • the option of additional treatment, if appropriate and desirable
    • the offer of more information and advice through a regional representative of BLS who specialises in lymphoedema or through a lymphoedema support group

GP needs

  • As the first port of call for the patient, and as the coordinator of that patient's healthcare, the GP is responsible for ensuring that the patient's needs are fulfilled. The GP must ensure:
    • the correct diagnosis has been made (remembering that most peripheral oedema is due to cardiac, renal, hepatic or venous disease). If necessary, referral to an appropriate hospital specialist should be made
    • the provision of care according to the minimum standards outlined, in particular a supply of appropriate hosiery with replacements every 4-6 months or as deemed necessary by a lymphoedema specialist
  • To achieve this the GP must be well informed and know where to obtain further information
  • These patients are at high risk of cellulitis and recurrent cellulitis; full details on the management of cellulitis in lymphodema patients can be found at www.thebls.com

full guidelines available from…
British Lymphology Society, British Lymphology Society, 10 Saint Aidans Close, Cheltenham, Gloucestershire, GL51 0HL (enclose an SAE) Tel – 01242 245200, Fax: 01245 245200,
Email: info@thebls.com Website: www.thebls.com

British Lymphology Society. Strategy for lymphoedema care. July 2001, updated February 2009

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eGuidelines.co.uk (22 May 2012)
© 2012 MGP Ltd
First included: Oct 97, Updated Oct 00, Oct 01, Jun 07, Feb 08
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