Lymphedema in Canada: a qualitative study to help develop a clinical, research, and education strategy.

Objective: The aim of this study was to gather data from Canadian stakeholders to help construct a national strategy and agenda for lymphedema management.

Methods: The Canadian Lymphedema Framework, a collaboration of medical academics, lymphedema therapists, patient advocates, and others, used participatory action research and Open Space Technology to identify issues and build consensus at a national meeting of lymphedema stakeholders. Proceedings were videotaped and underwent content analysis. Existing Canadian documentation on lymphedema services was analyzed. Using those data sources, the Canadian Lymphedema Framework drafted a development strategy.

Results: Of 320 invited stakeholders (patients, therapists, physicians, industry representatives, and health policymakers), 108 participated in a day-long videotaped meeting discussing strategies to improve the management of lymphedema and related disorders in Canada. Participants identified barriers, challenges, and issues related to the need to raise awareness about lymphedema with patients, physicians, and the public. Five priority areas for development were articulated: education, standards, research, reimbursement and access to treatment, and advocacy. The main barrier to development was identified as the lack of clear responsibility within the health care system for lymphedema care.

Conclusions: Data from stakeholders was obtained to solidly define priority areas for lymphedema development at a national level. The Canadian Lymphedema Framework has created a working plan, an advisory board, and working groups to implement the strategy.