Head and neck lymphoedema service provision in the UK: a survey of practice

As the incidence of head and neck cancer (HNC) is increasing, patients are living for longer with late effects of HNC treatment, one of which is head and neck lymphoedema (HNL). Whilst HNL has been hugely under-reported and under-treated, recent studies have identified up to 90% of patients who have HNC treatment can develop HNL. This can be as devastating as the cancer diagnosis and treatment itself, but last many years longer, impacting on quality of life (QOL), swallowing function, nutrition, hydration, social isolation, depression and appearance. It is important to determine availability of services and treatments for patients with HNL and understand the differences in health care services provided in these settings to identify gaps in provision.

A two-part Qualtrics questionnaire was distributed to health professionals involved in the HNC Multi-Disciplinary Team via social media platforms, HNC-related organisation websites/accounts and a UK HNC Support Group.

The survey received 169 responses, 134 of which were analysed as the final data set once test and incomplete entries were eliminated. Participant narratives were described using content analysis and descriptive statistics.

This survey suggests a large proportion of HNC patients are not being referred to services compared with the documented incidence of HNL in this patient group after treatment. This disparity in assessing and treating HNL across the UK is consistent with available published literature. Barriers to referring and accessing services are multi-factorial for referrers and patients alike.