An international survey to explore outcome measures in chronic oedema and lymphoedema.

There is a lack of agreement on treatment outcomes for chronic oedema and lymphoedema. The International Lymphoedema Framework (ILF) is undertaking a project to understand this. An international survey using a range of methods was developed and deployed through SurveyMonkey and social media. A total of 8014 respondents from 61 countries participated, including 48.5% professionals (medicine, 18.7%; nursing, 21%; physiotherapy, 39.6%; occupational therapy, 7.8%; other professions, 12.9%) and 51.4% patients. The maximum number of responses were received from the Netherlands (14.5%), followed by France (12.6%) and the UK (11.7%). The social media campaign reached 47 countries, with patients forming two-thirds of the respondents (67%). Professionals' and patients' knowledge deficits were evident, and both groups rated limb volume as the most important outcome measure; they also stated that it was the main indicator treatment efficacy. Limb volume stability was considered as the main outcome for intensive treatment and a marker of stability in long-term management. Quality of life and symptom control were also reported as important outcome measures. Based on the survey findings, the authors concluded that outcome measures are not well understood or consistently used in the treatment of chronic oedema or lymphoedema. Further, limb volume is the main outcome measure, but other measures such as quality of life and symptom control are also important.