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

Abstract

The aim of this study was to explore people's experiences of living with lymphoedema and to assess the impact of access to local lymphoedema clinics on their condition and thus their lives. A chronic condition caused by reduced lymphatic function, lymphoedema leads to swelling, pain and mobility problems and can adversely affect quality-of-life. It is of international concern as its prevalence is rising. Yet lymphoedema awareness is limited, diagnostic delay common and access to specialist treatment restricted. The concept of local lymphoedema clinics is gaining support and in 2011 the All Wales Lymphoedema Service was founded. However, empirical investigation of local lymphoedema services remains limited. A qualitative exploratory study consisting of focus group interviews in every Welsh lymphoedema clinic (n=8). A convenience sample of adults living with lymphoedema in Wales was recruited. Data were collected in digitally recorded focus groups during July and August 2013. Interviews were fully transcribed and analysed using a qualitative content approach. Fifty-nine people participated in eight focus groups. Analysis revealed three themes: Living with lymphoedema is a battle; delays in obtaining a correct diagnosis 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 to lymphoedema self-management. Local specialist lymphoedema clinics can make a positive difference. They may be cost-effective and further investigation, including economic evaluation is necessary.