A qualitative national focus group study of the experience of living with lymphoedema and accessing local multiprofessional lymphoedema clinics

Aim. The aim of this study was to explore people’s experiences of living withlymphoedema and to assess the impact of access to local lymphoedema clinics ontheir condition and thus their lives.Background. A chronic condition caused by reduced lymphatic function,lymphoedema leads to swelling, pain and mobility problems and can adverselyaffect quality-of-life. It is of international concern as its prevalence is rising. Yetlymphoedema awareness is limited, diagnostic delay common and access tospecialist treatment restricted. The concept of local lymphoedema clinics isgaining support and in 2011 the All Wales Lymphoedema Service was founded.However, empirical investigation of local lymphoedema services remains limited.Design. A qualitative exploratory study consisting of focus group interviews inevery Welsh lymphoedema clinic (n=8).Methods. A convenience sample of adults living with lymphoedema in Wales wasrecruited. Data were collected in digitally recorded focus groups during July andAugust 2013. Interviews were fully transcribed and analysed using a qualitativecontent approach.Findings. Fifty-nine people participated in eight focus groups. Analysis revealedthree themes: Living with lymphoedema is a battle; delays in obtaining a correctdiagnosis and the positive impact of lymphoedema clinics on participants’ lives.Locally accessible clinics made meaningful differences to peoples’ lymphoedema,engendered positive outcomes and improved engagement with and adherence tolymphoedema self-management.Conclusions. Local specialist lymphoedema clinics can make a positive difference.They may be cost-effective and further investigation, including economicevaluation is necessary