Early diagnosis of lymphoedema helps to reduce its psychological and social impact
Many nurses have a limited knowledge of lymphoedema but its impact on patients is considerable. Accurate diagnosis is crucial to prevent or minimise complications
Garry Cooper BSC, SCPHN, DipHe Nursing, is Macmillan lymphoedema nurse specialist at Walsall lymphoedema service, Walsall Community Health.
Cooper G (2010). Early diagnosis of lymphoedema helps to reduce its psychological and social impact. Nursing Times;106: early online publication.
Lymphoedema is a little known condition that often goes unrecognised and its impact is underestimated. This article looks at how to recognise lymphoedema, the consequences of misdiagnosis and various treatment options.
Keywords Lymphoedema, Cellulitis, Papillomas, Compression hosiery
- This article has been double-blind peer reviewed
Primary lymphoedema affects between 1 in 6,000 to 1 in 10,000 people (Lymphoedema Framework, 2006; Rockson, 2001). Secondary lymphoedema is estimated to affect 100,000 people in the UK (Moffatt et al, 2003). The differences between these two types are outlined in Box 1.
Box 1. Types of lymphoedema
- Primary lymphoedema -an abnormality of development of the lymphatics.
- Secondary lymphoedema - damage to the lymphatics by an extrinsic process such as surgery, radiotherapy, trauma or infection.
Lymphoedema is a subject that patients, and in some cases healthcare professionals have limited knowledge about. The International Society of Lymphology (2003) defines the condition as the accumulation of fluid and other elements - for example, protein - in the tissue spaces, due to an imbalance between interstitial fluid production and transport. As a result of this imbalance, lymphoedema can occur in any part of the body, due to lymphatic failure, or through damage or trauma (Lymphoedema Support Network, 2010). This article examines the causes of lymphoedema and discusses the reasons why the scale of the condition is underestimated.
Reasons for under reporting
Many leading healthcare professionals support the notion that lymphoedema is more prevalent within the UK than current estimates (Rockson and Rivera, 2008; Moffatt, 2007). One of the reasons the condition is underestimated is that there are insufficient lymphoedema services available within the UK (Morgan and Moffatt, 2007). It can also be argued that healthcare professionals have a limited knowledge and awareness of the condition.
Rockson (2007) and Ward et al (2009) suggested that a lack of knowledge and awareness of the condition, results in patients not receiving appropriate diagnosis and treatment.
Currently, there is no standardised education in England on lymphoedema for health professionals, but there is an internationally agreed document on recognising and treating the condition (Lymphoedema Framework, 2006). Northern Ireland and Wales has guidelines (Welsh Assembly Government 2010, Clinical Resource Efficiency Support Team (CREST), 2008) but England and Scotland have yet to address the condition in a structured way. Existing guidelines recognise the impact of lymphoedema and strengthens the argument that healthcare professionals need access to educational material, and programmes on lymphoedema. This may help to identify the numbers of people affected with the condition.
Limited awareness and knowledge about lymphoedema, can contribute to the idea that it is solely a cancer related condition, leading to services that focus purely on this area (Morgan and Moffatt, 2007). This perception has led to inequity in the service provision to those with non cancer related lymphoedema (Moffatt, 2007; Williams et al, 2005). Due to this disparity between cancer and non cancer related lymphoedema, it is likely the impact of the condition is under reported (Sitzia et al,1998). This has an impact not only on the accurate recording of lymphoedema numbers, but also on patients whose condition is not related to a cancer diagnosis.
Inappropriate services or lack of service provision can also contribute to underestimating the impact of lymphoedema. Services are currently commissioned based upon population needs analysis. However, because of limited awareness or knowledge of lymphoedema, commissioners may not be able to gather robust and detailed data (Morgan and Moffatt, 2007). Moffatt (2007) also noted that within the UK there are locations that have no lymphoedema service provision, or are solely focused on cancer related lymphoedema.
If the current estimates of primary and secondary lymphoedema are used as a basis for prediction (CREST, 2008), it can be presumed that in any town or city there are people who have yet to be diagnosed with lymphoedema. Without the provision of a lymphoedema service, these potential patients may continue to be misdiagnosed, contributing to the overall underestimation of the condition.
The importance of recognising the condition extends beyond the need to have accurate estimates, as it can cause complications for patients if they do not receive treatment. These complications can have lasting effects if treatment of the condition is not instigated promptly and have a major impact upon the patient psychologically, socially and financially (Passik and McDonald, 1998).
The psychological and social impact of lymphoedema can vary according to the patient and their diagnosis. Patients with cancer perceive lymphoedema as a constant reminder of their cancer diagnosis, while non cancer patients may view it in terms of altered body image (Woods, 2000). This has led to the development of a range of psychological conditions, for example depression, stress and anxiety (Passik and McDonald, 1998). The psychological impact of lymphoedema can lead to patients isolating themselves from other people, and can also cause relationship difficulties (Woods, 2000).
Controlling the physical impact of lymphoedema can assist in reducing the psychological and social impact of the condition. Physically the complications of lymphoedema may involve minor to severe increases in limb size leading to skin changes, for example the development of papillomas, skin folds and increased episodes of infections (Lymphoedema Framework, 2006; CREST, 2008). This can lead to mobility difficulties due to the excessive volume of the limb and increased pain (Twycross, 2000; Woods, 2000). If lymphoedema is diagnosed early, the physical complications can be minimised, but this is dependent upon its causes and patients ability to accept their condition.
From a financial perspective, the impact of lymphoedema on patients can lead to long term disability and increased difficulties continuing with, or obtaining employment (Moffatt, 2007). For example, infection associated with lymphoedema will take longer to resolve (British Lymphology Society, 2010). This will lead to increased sickness and absences from work, or may prevent patients from obtaining and completing work. This issue is particularly pertinent given the current climate of increasing unemployment, and the government agenda to reduce the financial burden of people on incapacity benefit (Wintour et al, 2010). The impact of lymphoedema cannot be underrated, but by ensuring prompt and effective diagnosis of the condition its long term impact can be minimised.
Signs and symptoms
To highlight the importance of early diagnosis, Box 2 shows the signs and symptoms of lymphoedema. These signs indicate whether the patient has lymphoedema, but are not be the sole basis for diagnosis as other co-morbidities may present with similar symptoms, such as renal failure and heart failure (CREST, 2008). Lymphoedema also has a number of different stages, which will assist in identifying the severity of the condition (International Society of Lymphology, 2003).
Box 2. Signs and symptoms
- Limb swelling.
- Complaints of heaviness.
- Tingling sensation.
- Skin tight and shiny.
- Skin change (hyperkeratosis, papillomatosis).
- Repeated infection.
Source: Lymphoedema Framework (2006)
Patients diagnosed with lymphoedema can expect to receive either a single to combination of treatments depending upon cause, severity and co-morbidities. Decongestive lymphatic therapy (DLT) - also known as complex decongestive therapy (CDT) - is split into either an intensive or maintenance phase (CREST, 2008). Patients with mild cases of lymphoedema will only require the maintenance phase. There is no standard costing for delivering treatment as it is dependent upon the service model used and patient need. Box 3 illustrates the two phases.
Box 3. Decongestive lymphatic therapy
Phase 1 Intensive (2-6 weeks):
Manual Lymphatic Drainage (MLD);
Multilayer Lymphoedema Bandaging (MLLB).
Phase 2 Maintenance
Simple lymphatic drainage (if appropriate);
Manual lymphatic drainage (if appropriate).
Source: CREST (2008)
Patients can expect to receive skin care, exercise, manual or simple lymphatic drainage, compression bandaging and hosiery (Lymphoedema Framework, 2006) (see Box 4). There is still insufficient, robust trial evidence on each component (Szuba et al, 2002; CREST, 2008) but currently an international consensus supports DLT in the treatment of lymphoedema (Lymphoedema Framework, 2006).
Box 4. Treatments
Manual lymphatic drainage aims to remove excess fluid from the limb by stimulating the lymphatic system.
Simple lymphatic drainage is a simplified version of MLD, which the patient completes.
Compression bandaging aims to provide low resting and high working pressures, to enhance lymph circulation.
Exercise aims to enhance muscle pump activity and to increase lymph circulation.
Skin care aims to maintain skin integrity and elasticity through the application of emollients.
Source: CREST (2008); Lymphoedema Framework (2006)
The aim of treatment is to reduce and manage lymphoedema, and then transfer care of the condition back to the patient (CREST, 2008; Lymphoedema Framework, 2006). This will involve educating the patient about lymphoedema, and may require regular reviews to ensure their condition is stable prior to discharge. However, if the patient’s condition deteriorates they may never be discharged and may require further support. While lymphoedema is a long term condition, through empowering the patient they can be supported to manage it and to function fully within society.
If patients are identified as having signs of lymphoedema, they should be referred to their local lymphoedema service. This will ensure that their diagnosis is confirmed and treatment can be started, helping them to avoid further complications, as well as reducing the cost implications if patients are not treated effectively.
However, in areas where there is no lymphoedema service, health professionals need access to education about lymphoedema so that the care of patients can be managed effectively. If the demand for a lymphoedema service is evident in an area, healthcare professionals or even patient groups could make a business case for a service to be commissioned within their area.
Clearly lymphoedema is an underestimated condition, which has the ability to impact on a patient in many ways. Underestimating the impact of this condition has led to inequity in service provision within the UK. Only by increasing awareness, knowledge and access to lymphoedema services can the true estimation of the condition and its impact be understood. This will require all key stakeholders, including patients, healthcare professionals and commissioners, to work together to achieve this goal.
This case study highlights the problem of failing to diagnose lymphoedema promptly.
Two years ago, Mr George (not his real name), a 40 year old man was diagnosed with primary lymphoedema, which was affecting his left leg. He had suffered with left leg oedema since he was 14 years old. During those years he visited his GP on numerous occasions, each time with no clear diagnosis or referral to a lymphoedema or vascular service.
Mr George’s GP had prescribed diuretics to reduce the oedema. Diuretics are not recommended in the treatment of lymphoedema because the cause of the oedema is related to lymphatic failure, rather than conditions such as congestive heart failure. However, there are some cases where there are multiple co-morbidities where a trial with diuretics may improve patient symptoms (Twycross, 2000; Lymphoedema Support Network, 2010). Due to the length of time between developing lymphoedema and his diagnosis Mr George had experienced extensive skin changes, repeated infections and his left leg was 30% bigger than his right leg.
Mr George had been admitted to hospital four times, on each occasion requiring one week admission for intravenous antibiotics, followed by a course of oral antibiotics. Mr George’s ability to work had been hindered by reduced mobility relating to the size of his leg, and the amount of time lost due to sickness. He was also experiencing severe depression and did not wish to leave the house due to the size of his leg.
The current cost of hospital admission due to the complication of cellulitis is £700 per day (Todd et al, 2010). George’s 7 day admission is estimated to have a total cost of £4,900. However the total cost for four admissions to hospital, based on 7 days equates to £19,600. This is does not take into account the price of the GP consultation and the repeated prescriptions of antibiotics. The cost of hospital admission could have been avoided if he had been treated earlier.
After being assessed and treated by the lymphoedema service, the size of his leg was reduced to a level in which it could be maintained in compression hosiery, which led to increased mobility. George also experienced fewer infections which improved his quality of life.
George’s case highlights the impact that lymphoedema has on a patient who experiences a delay in diagnosis. It also demonstrates the positive impact that lymphoedema services can provide.
Baskerville P(1989) Primary lymphoedema. Surgery; 65:1550–5.
British Lymphology Society (2010) Consensus Document on the Management of Cellulitis in Lymphoedema. Cheltenham: British Lymphology Society.
Clinical Resource Efficiency Support Team (CREST) (2008) Guidelines for the Diagnosis, Assessment and Management of Lymphoedema. Belfast: CREST.
International Society of Lymphology (2003) The diagnosis and treatment of peripheral lymphedema. Consensus document of the International Society of Lymphology. Lymphology 2003; 36: 2, 84-91.
Lymphoedema Framework (2006) International consensus best practice for the management oflymphoedema. London: Medical Education Partnership Ltd.
The Lymphoedema Support Network (2010) Living with Lymphoedema.
Moffatt C et al (2003) Lymphoedema: an underestimated health problem. QJM; 96: 731–738.
Moffatt C (2007) Developing a lymphoedema service. London: Medical Education Partnership Ltd.
Morgan P, Moffatt C (2007) Making the case for developing a lymphoedema service. London: Medical Education Partnership Ltd.
Passik S, McDonald M (1998) Psychosocial aspects of upper extremity lymphoedema in women treated for breast carcinoma. Cancer; 83:12, 2817-20.
Rockson S, Rivera K (2008) Estimating the population burden of lymphedema. Annals of the New York Academy of Sciences; 1131:147–154.
Rockson S(2007) Bioimpedance analysis in the assessment of lymphedema diagnosis and management. Journal of Lymphoedema; 2: 1, 44-48.
Rockson S(2001) Lymphoedema. American Journal of Medicine;110: 4, 288-95.
Sitzia J et al (1998) Characteristics of new referrals to twenty-seven lymphoedema treatment units. EuropeanJournal of Cancer Care; 7: 255-62.
Szuba A et al (2002) Decongestive lymphatic therapy for patients with breast carcinoma related lymphedema. A randomized, prospective study of a role for adjunctive intermittent pneumatic compression. Cancer; 95: 11, 2260-7.
Todd et al (2010) Helping patients self-manage their lymphoedema. Journal of Lymphoedema; 5: 1, 91-97.
Twycross R (2000) Pain in Lymphoedema. in Twycross, R (ed) Lymphoedema. Oxford: Radcliffe Medical Press Ltd.
Ward L et al (2009) Operational equivalence of bioimpedance indices and perometry for the assessment of unilateral arm lymphedema. Lymphatic Research Biology; 7:81–5.
Welsh Assembly Government (2010) Strategy for Lymphoedema in Wales. Designed for Lymphoedema.Cardiff: Welsh Assembly Government.
Wintour P et al (2010). Welfare crackdown begins with drive to reduce incapacity benefit claims. The Guardian;28 June: 1-4.
Woods M (2000) Psychological aspects of lymphoedema. in Twycross R (ed) Lymphoedema. Oxford: Radcliffe Medical Press Ltd.
Williams et al (2005) Lymphoedema: estimating the size of the problem. Palliative Medicine; 19: 300-13.