Children and young people with lymphoedema: Quality of life tool validation
Lymphoedema is a very rare disease in children and young people that can make the young person feel that they are ‘alone in the world’. The International Lymphoedema Framework is wanting to validate a Quality of Life tool to give greater understanding of how this condition affects the life of the person who has it. If you have a child aged 5-12 years or a young person aged 13-21 years who has lymphoedema their help in this would be very valuable. Please encourage them to answer the questionnaires at the link below. The questionnaire takes about 15 minutes to answer. Information about it can be found once the link has been accessed.
ILF Children’s project
Primary lymphoedema is a rare and orphan disease due to a failure in the embryonic lymphatic system development. It can cause large body distortions, physical disability and psychological suffering that deeply affect the quality of life of patients and their families. Children often feel different and “alone in the world” with their condition.
In order to help children with Lymphoedema, the International Lymphoedema Framework (ILF) and the Partenariat Français du Lymphoedème (PFL – the French Lymphoedema Framework) are working together on the Children’s Project.
The ILF and PFL are continuously working on further development and implementation of a structured therapeutic education program for children and their families. The purpose of this program is to empower children, families and their carers (doctors and physiotherapists).
The ILF Children’s strategy has many streams of work including improving access to correct information for families and the identification of the clinical implications of important problems such as cellulitis that occurs frequently in children from a young age.
An important aspect of the Children’s project is the organisation of international educational camps for children and young adults with lymphoedema. The first one was held in Montpellier, France in June 2012. The camp was based on a model that had been running for over 10 years in Montpellier. Nine children and young adults from four different countries attended the camp and took part in the many Therapeutic Education Workshops and Creative and Leisure Activities. They not only learned a lot about self-management of their condition but more importantly, had lots of fun. The participants also contributed to the shooting of the film “Children and lymphoedema”, an educational tool designed to explain to children what primary lymphoedema is, including testimonials on some of the children’s most important questions about their condition.
In 2017, a second international ILF camp was run in Turin, Italy, in partnership with the Italian Lymphoedema Framework and organised superbly by Elodie Stasi and the Italian team. 23 children with their siblings and parents from France, Italy, Canada, South Africa and Southern Ireland attended the camp. This was a deeply moving event with over 80 people attending including the therapy teams from France, Italy and Ireland.
The camp involved therapeutic workshops as well as many fun activities and new developments such as new approaches to aqua-exercise for children and climbing events that were immensely enjoyed by the children (although viewed with some trepidation from parents). The children and parents were faced with the enormous challenge of mosquito bites that caused huge problems for many including one child who developed cellulitis. This reinforced our need to understand the risk of these issues and the fear this causes parents and proved a surprise to the clinicians attending.
In 2018, ILF invited children and their families to join a special day on 9 June in Rotterdam during the ILF 2018 Conference. The Children’s Day offered sports, psyche, relaxing, nutrition, lifestyle and creativity – all around the theme ‘Journey through the lymphatic system’.
During 2017, the ILF undertook a mixed methods research project to try and understand the challenges of self-management for children, adolescents, parents and professionals.
The difficulty of parents finding accurate information about lymphoedema was once again identified as a huge problem as was the debate of whether surgery plays a role in treatment and the ongoing quest for cure. Isabelle Quere is undertaking a consensus project to clarify some of these issues and the ILF will develop new educational materials with these findings.
During the camp in Turin in 2017, a quality of life tool, initially developed in France, was further validated in English and Italian. In 2018 this work was extended in Rotterdam (for Dutch children who attended the ILF conference) and through the Danish Framework with Susan Norregaard holding a day meeting with the children and families from her country. This was the start of development of outcome measures dedicated to children.