SMASAC Short Life Working Group on Lymphoedema - Lymphoedema Care in Scotland, Achieving Equity and Quality

Section 1: The Size and Nature of the Problem

Studies of the prevalence of lymphoedema in the UK have suggested that between 1.33 and 3.99 in 1,000 people of all ages are affected by lymphoedema, with increasing prevalence in people over the age of 65 (Moffatt et al, 2003; Moffatt and Pinnington, 2012). The incidence of primary lymphoedema is approximately 1 in 6,000 births (Dale, 1985). We can therefore estimate that between 7,000 and 21,000 people are affected by secondary lymphoedema and approximately 10 children are born each year with primary lymphoedema in Scotland. The wide range reflects the relative lack of good data and these figures are likely to be an underestimate. The prevalence of lymphoedema in breast cancer patients has been reported as between 12% and 60% (Mortimer et al, 1996; Schrenk et al, 2000; Meric et al, 2002; Ozaslan and Kuru, 2004) and in patients treated for gynaecological cancers as between 28% and 47% (Hong et al, 2002; Ryan et al, 2003).

Lymphoedema, particularly if not well controlled, carries significant human, personal, financial and societal costs. Pain associated with lymphoedema is underestimated: one study identified it as a significant problem for 50% of people with lymphoedema (Moffatt et al, 2003). The same study identified that 29% of patients experienced cellulitis and required hospitalisation for systemic antibiotics. Inadequate treatment increases risk of complications including fibrosis, papillomatosis (the development of warty growths on the skin consisting of dilated lymphatics and fibrous tissue) and lymphorrhoea (leakage of lymph fluid through the skin), in addition to increasing swelling, immobility and functional limitations (Sneddon et al, 2008). There may be significant psychological morbidity, social isolation and limitation of life choices, including employment opportunities (Moffatt et al, 2003; Sneddon et al, 2008). The morbidity associated with poorly treated lymphoedema not only decreases the quality of life (Morgan et al, 2005), but also increases dependence on health and social services and costs of care provision. Conversely, accurate early diagnosis and control of the physical impact of lymphoedema at an early stage can reduce the social and psychological impact of the condition.

The burden and costs associated with lymphoedema care have the potential to increase significantly in the next decade as the prevalence of lymphoedema is likely to rise in tandem with expected increases in at-risk groups, including older people who are less mobile, those who are obese and some cancer patients.

Estimating the number of people affected by lymphoedema in Scotland is difficult. Hospital coding of lymphoedema is known to be incomplete and coding by GP practices is not systematic. Under-recognition and under-treatment of lymphoedema also mean that data from healthcare systems are likely to underestimate the true prevalence and burden of disease.

Appendix 2 shows more data on health service provision for lymphoedema in Scotland.

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