Lymphoedema: an underestimated health problem

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Lymphoedema: an underestimated health problem

Postby patoco » Mon Nov 28, 2011 10:58 am

Lymphoedema: an underestimated health problem

C.J. Moffatt 1 , P.J. Franks 1 , D.C. Doherty 1 , A.F. Williams 1 , C. Badger 2 , E. Jeffs 3 , N. Bosanquet 4 and P.S. Mortimer 2
+ Author Affiliations

From the 1Centre for Research and Implementation of Clinical Practice, Faculty of Health & Human Sciences, Thames Valley University, London, 2St George’s Hospital Medical School, London, 3The Haven Trust, London, 4Department of Bio-engineering, Imperial College, London, UK
Address correspondence to Professor C.J. Moffatt, Centre for Research and Implementation of Clinical Practice, Faculty of Health & Human Sciences, Thames Valley University, 32–38 Uxbridge Road, London W5 2BS. e-mail:

Received January 20, 2003.
Revision received August 7, 2003


Background: Lymphoedema/chronic oedema is an important cause of morbidity in the population, but little is known of its epidemiology and impact on patients or health services.

Aim: To determine the magnitude of the problem of chronic oedema in the community, and the likely impact of oedema on use of health resources, employment and patient’s quality of life.

Design: Questionnaire-based survey.

Methods: Health professionals from dedicated lymphoedema services, specific out-patient clinics, hospital wards and community services (GP clinics and district nurses) were contacted to provide information on patients from within South West London Community Trust. A subset of the identified patients was interviewed.

Results: Within the catchment area, 823 patients had chronic oedema (crude prevalence 1.33/1000). Prevalence increased with age (5.4/1000 in those aged > 65 years), and was higher in women (2.15 vs. 0.47/1000). Only 529 (64%) were receiving treatment, despite two specialist lymphoedema clinics within the catchment area. Of 228 patients interviewed, 78% had oedema lasting > 1 year. Over the previous year, 64/218 (29%) had had an acute infection in the affected area, 17/64 (27%) being admitted for intravenous antibiotics. Mean length of stay for this condition was 12 days, estimated mean cost £2300. Oedema caused time off work in > 80%, and affected employment status in 9%. Quality of life was below normal, with 50% experiencing pain or discomfort from their oedema.

Discussion: Chronic oedema is a common problem in the community with at least 100 000 patients suffering in the UK alone, a problem poorly recognized by health professionals. Lymphoedema arising for reasons other than cancer treatment is much more prevalent than generally perceived, yet resources for treatment are mainly cancer-based, leading to inequalities of care.

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Lymphoedema is a chronic condition characterized by oedema, usually of one or more limbs and in some cases involving the trunk, head or genital area. While it is acknowledged as a serious complication following treatments for cancer, there has been little appreciation that lymphoedema may affect many other types of patient where the cause is not oncology-related, and provision of care has focused on patients following treatment for cancer. There is no proven drug treatment for lymphoedema. Management aims to reduce or delay the progression of swelling and prevent associated infection. This is usually achieved using a combination of skin care, external pressure (bandaging or hosiery), isotonic exercise and massage.1,,2 The proof of concept for using physical means to stimulate a failing lymph drainage has a sound physiological basis, but the quality of evidence on the relative effectiveness of therapies is poor. Few randomized controlled trials have been published, and none has evaluated patients’ treatment preferences or effects on quality of life.3

At present, service delivery is based on the relationship of lymphoedema with cancer, and patients with other forms of lymphoedema are often denied access to care. As part of the National Service Framework for cancer services, lymphoedema treatment is highlighted for provision.4 This two-tiered system has developed due to a lack of appreciation of the true prevalence of lymphoedema within the general population, leading to lymphoedema being a low priority in an already over-stretched health service.

It is difficult to make recommendations about service delivery when little is known about either the magnitude of the problem or the deficits of care. Current epidemiology estimates are based frequently on small selected populations with specific clinical problems such as breast cancer.5 Little is known of the numbers of patients being managed in general practice or by community services. Many of the existing lymphoedema services are based in hospices or oncology departments of acute hospitals, by their nature restricting access to other patient groups. The patients’ representative body, the Lymphoedema Support Network (LSN), has identified major deficits in care delivery across the country.6 Anecdotal reports suggest that patients travel many miles for diagnosis and treatment of their problem.

The present study is the first stage of a strategy to develop effective lymphoedema services within the UK, using best available evidence on cost-effective care. The objective of this epidemiology study was to identify all patients with chronic oedema, likely to be lymphoedema, of > 3 months duration who were known to, or being treated by, health professionals within a specified geographical area at the time of survey. Ideally, the diagnosis of lymphoedema is made on clinical grounds and confirmed by lymphoscintigraphy.7 For the purposes of this epidemiological study, lymphoscintigraphy on all suspected cases was impractical and therefore the diagnosis was made according to set clinical criteria, namely: (i) persistent oedema of > 3 months duration; (ii) minimal response to overnight elevation or diuretics; and (iii) the presence of skin changes indicating early elephantiasis (thickened skin, hyperkeratosis and papillomatosis). Criticism that chronic oedema due to other aetiologies was included can be defended on the basis that (a) patients with systemic disorders likely to cause oedema, e.g. acute heart failure, were excluded from the study and (b) all other forms of oedema, whatever the underlying cause, are due to an imbalance between capillary filtration and lymph drainage.8 Increases in filtration should be compensated for by an increase in lymph drainage. Any oedema therefore implicates the lymphatic system to some extent, even though it may not be primarily at fault.9


The research partnership included clinicians, researchers, organisational consultants and the LSN, who shared responsibility for the development and delivery of the project. The study was carried out in the former South West London Community Trust (SWLCT) in 2000. At the time of study, the Trust was responsible for delivering care to a population of approximately 619 000, of whom 14% were over the age of 65, and 15% were from ethnic minority groups. In addition to the community services, the area was served by two specialist lymphoedema services (St George’s Hospital and the Royal Marsden Hospital, Fulham Road and Sutton). Acute general services were also provided by St Helier and Epsom Hospitals and Care of the Elderly at Bolingbroke and Epsom Hospitals. All local ethics committees were contacted and gave consent for the study to be undertaken in their clinical areas.

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