Women’s and practitioners’ views of early intensive decongestive lymphoedema treatment for breast cancer-related arm lymphoedema: a focus group study

Purpose To explore the experiences and opinions of women with breast cancer-related arm lymphoedema (BCRL), a common sequela of breast cancer treatment, and of lymphoedema practitioners regarding current lymphoedema treatment in the UK, priority outcomes and assessment methods, and acceptability of a future trial of lymphoedema treatment and use of intensive-decongestive lymphoedema treatment (DLT) for women presenting with BCRL. Method Two focus groups were conducted with 13 women and three focus groups with 13 lymphoedema practitioners. Discussions were transcribed and analysed using framework analysis. Results Usual UK lymphoedema care was self-treatment with hosiery. Women and practitioners supported the notion of early intervention although practitioners reported lack of capacity to provide intensive-DLT. All groups considered arm volume an important outcome but were unsure what treatment outcomes could be expected. Participants supported the need for a trial to identify effective treatment for women with previously untreated BCRL but could not describe criteria for a good clinical outcome. Conclusions Study findings demonstrate the need and desire of women and practitioners for robust research to determine the most effective treatment for women with early-BCRL, that is, within 12 months of BCRL onset, including intensive-DLT. However, UK lymphoedema services lack capacity to provide intensive-DLT, so the potential to conduct a future trial of effectiveness is likely to be limited. Implications for Cancer Survivors Women with arm BCRL can expect to receive self-treatment with hosiery. There is a need to identify effective treatment for women with arm lymphoedema and criteria for a good clinical outcome.