Date: 04 June 2021

Lympho QOL update

So far it has been accessed by 379 children or young people and completed by 299 of these. It has reached people in 26 countries. Recently the ILF was approached by Spain to ask if the questionnaire could be translated into Spanish thus joining the other 7 languages it is already available in. Not only did this seem a good opportunity within Europe but a Spanish translation would also reach out to so many South American countries too. In view of this Nottingham University (UK) ethics department were approached to request an extension of the current timing. This was granted and the study will now remain open until February 2022.

But, we were also concerned about how little information we had on the wellbeing of children and young people in some of the poorer resource countries. Covid hasn’t helped in this, and delayed our obtaining access, but Medics from the Institute of Applied Dermatology have agreed to translate the questionnaire into 3 dialects that will eventually be used within that country.

We continue to value your interest and help in promoting this piece of research and would urge you to do as much as you can to make it known. The links to the questionnaire for each country are as follows:

Thanks for your help!

Children and young people with lymphoedema have for too long not had a voice — so what an opportunity this is.

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