Aim
To estimate the national prevalence and impact of lymphoedema in children and young adults (aged up to 30 years) within the Danish population, using a staged approach and mixed methods.
Objectives
To define:
- the underlying mechanisms leading to lymphoedema caused by cancer and other causes
- the aetiology according to clinical, genetic and psychosocial characteristics using an international algorithm
- the associated co-morbidities and complications.
To examine:
- the natural and family history of lymphoedema
- the cost burden associated with lymphoedema on patients and families
- the impact on functional status
- the impact on quality of life.
To identify
- health indices for all groups
- the impact on families as a whole.
Study Setting
National study coordinated by the Copenhagen Wound Healing and lymphoedema Centre at Bispebjerg Hospital, Denmark
Progress to Date
The study has full ethical approval (project H-19083222 ) and has recruited 84 children since its inception.
Screening of the data registry commenced, and a random sample has been identified to be included in the study. All those included will be prospectively followed up at 6 monthly intervals throughout the project and clinical, cost and quality of life data (EQ5D and disease specific tools) captured.
