Abstract
Background: Lymphedema in children and adolescents is a rare and chronic condition. The management of their lymphedema is mainly driven by the adaptation of treatments used in adults. The aim of our study was to explore the needs and challenges the children and adolescents face during their management with the aim of finding ways to satisfy these needs and organize an hospital-based centre accordingly with an educational program. Methods and Results: Patients and their families were given the opportunity to meet other patients, their families and professionals during social activities organised annually and during two international camps. They were invited to take part in different semi structured focus groups and interviews. All patients and families described a long journey and relief when the diagnosis was obtained followed by the shock of being told that it was a chronic condition. Meeting other children with the condition was a relief. The impact of lymphedema on body shape and genitals was a source of distress. Rejection of the compression was part of journey. Lymphedema management had an impact on all the family members including siblings. Parents were responsible for their child self-management in young children which was described as demanding. It was followed by a complex transition phase to self-management. The impact was not the same according to the age the lymphedema had started. Conclusion: Acceptance and management of lymphedema is complex and invades many aspects of families' life. Self-management is demanding. Based on these results, the management of lymphedema in the centre included meeting other children and families and an educational program based on individual needs and follow-up. Clinical Trials.gov ID:NCT01922635.