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Audit to strategy: development of a national children and young people lymphoedema service

02 April 2022
18 min read
Volume 3 · Issue 2


Lymphoedema in children and young people (CYP) can cause significant impact affecting physical, psychological and social wellbeing. This audit of 286 CYP with Lymphoedema (2015–2018) is the first national cohort reported and provides new information on patient reported outcome (PROM) changes over time. Conservative therapy produced statistically significant change in outcome measures relating to swelling, infection, appearance and compression garments. Almost half of the children had primary lymphoedema of varying types. An overall prevalence of 31 per 100 000 CYP with lymphoedema was found among a population aged 0–25 over a 3-year period. This finding suggests a higher occurrence of lymphoedema in children and young people than previously reported and is important for service planning and health professionals' education.

Lymphoedema in children and young people (CYP) can affect physical, psychological and social wellbeing and cause significant impact on daily life (Moffatt and Murray, 2010). Lymphoedema results from the failure of the lymphatic system to drain lymph fluid from the interstitial spaces (International Lymphoedema Framework [ILF], 2010). The term encompasses a range of symptoms including swelling, pain, decreased mobility and skin conditions (Morgan et al, 2005). CYP with lymphoedema have experienced issues with bullying, difficulty finding fashionable clothes and shoes that fit, altered personal relationships with family and in school (Hanson et al, 2018). Complicating factors include the risk of cellulitis and the psychosocial issues from having a visible but rare condition (Quéré et al, 2021).

As with adults, lymphoedema can be secondary to trauma or other pathologies but the majority in childhood are due to primary malformation and/or dysfunction of the lymphatic system (Gordon et al, 2020). Despite advances in the possibility of molecular and genetic diagnosis of primary lymphoedema (e.g. Milroy disease), diagnosis for many, particularly late-onset (e.g. Meige) or syndromic and systemic types (e.g. generalised lymphatic dysplasia), diagnosis for many, particularly late-onset or syndromic and systemic types, has been delayed by years (Gordon et al, 2020). True prevalence in CYP is unknown but for almost four decades, it has been based on an estimated average annual incidence of 1.15 per 100 000 (Smeltzer et al, 1985). Local variance may depend on study methods and regional service provision. For example, a regional comparison of overall prevalence (adults and children) in the West Midlands and Southwest of England found regional differences in prevalence (3.58 per 1 000 and 2.29 per 1 000 respectively) but in both regions children represented only 1% of the overall caseload (Cooper and Bagnall, 2016). However, as children services develop and accrue data, figures suggest that true incidence may be much higher (Todd et al, 2014).

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