Audit of childhood lymphoedema in the United Kingdom undertaken by members of the Children’s Lymphoedema Special Interest Group

Lymphoedema can be defined as a chronic swelling of one or more parts of the body due to a failure in lymph drainage. There is no curative treatment for this condition and the objective of Children’s Lymphoedema Special Interest Group (CLSIG) is to raise awareness of the condition and promote effective treatment. Although the majority of referrals to lymphoedema services are for the assessment and management of adults with lymphoedema, babies and children with lymphoedema and congenital abnormalities, such as Milroy disease (an autosomal dominant congenital disease affecting the lower limbs), have been recognised since as far back as 1892 (Milroy, 1892). Available evidence indicates that childhood lymphoedema is rare and there are few healthcare professionals with experience of diagnosing and treating lymphoedema in children (Mansour and Sharland, 1990; Todd, 2010a). The CLSIG) was formed in 2009 to gain more information about the number of children with this condition, to establish agreed methods of management and service provision, and to increase the about the gender of the child, familial pattern of the condition, age of onset, site(s) of the body affected, as well as known episodes of cellulitis. Lymphoedema diagnosis and types of investigation, if available, were recorded, as were details of the type of professional who had referred the children to lymphoedema services. No personal details were submitted regarding the children and each clinician had a unique identifying code known only to them, to which they added a number for each child that was submitted. The data collection forms were submitted either electronically or on paper to one of the authors who collated and analysed all data. The process of collecting data and the audit form were initially trialled by team members who submitted data between February and November 2010, at which point some minor revisions were made to the data collection form. The second phase of audit collection was then commenced with the aim of collecting information on children who were not known to members of the CLSIG, but who were treated by other members of the British Abstract