Children and Young People with Lymphedema: The Education Need of Health Care Professionals

Introduction: The education need of health care professionals (HCP) to provide good quality care to children and young people with lymphedema (CYPwL) was unknown. While understanding of pediatric lymphedema grows, families still report delays in accessing appropriate treatment and HCP have reported being ill-prepared.

Methods: A questionnaire was designed by phased process of literature search, focus group, and online consensus with international experts. The online survey, available in six languages, was distributed to HCP working with CYPwL by professional groups.

Results: Questionnaires were received from 507 responders from 33 countries. Specific education on the treatment of CYPwL is needed, even when HCP are adult lymphedema trained according to 80% of respondents. Greatest consensus on best practice was that a multidisciplinary team (MDT) with specialist knowledge is required to treat CYPwL, but almost one in five HCP working with CYPwL have no, or rare, access to such a team. Reducing infections and adapting compression/treatment for age and development were deemed most essential. A variety of learning resources are needed including films, videos, and webinars from clinical experts.

Discussion and Conclusion: This is the first international survey of the education need of HCP regarding CYPwL which include pathology, treatment, psychosocial care, and education of other professionals. Uppermost was knowing how to reduce infections and adapt compression and other treatments for age and development. Access to an experienced MDT was considered essential to support good clinical decision-making. Multimodal approaches are needed to address identified education need. Further research in individual countries and professions is recommended.