In the midst of this strange new world we are living in we wanted to update you on the progress of LYMPHOQOL, the Quality of Life Questionnaire that the International Lymphoedema Framework is presently validating.
Firstly, may we thank you for all your help in ensuring that families know about this project and encouraging them to access the questionnaire at the Survey Monkey site. It is through your intervention and the power of social media that almost 300 young people from 22 countries have connected online with many showing an interest in being involved in future research projects.
The survey is now available in 7 languages which opens it up to a greater audience. The languages are – French, English, Danish, German, Italian, Turkish, and Dutch. The original questionnaires have been translated and back translated to ensure accuracy and understanding in each language. It has been a much longer and a more complicated process than we had originally thought but our thanks go to all of you involved in this which enables us to approach many more people.
The Kidscape questionnaire is already accessible in multitude languages.
There have been contrasting methods used in different countries to promote the questionnaire – for instance Wales encouraged families to complete hard copies of the questionnaire during a fun day for families, Denmark are asking families to complete the questionnaire during clinic appointments, and many of you are contacting through phone, emails, and letters. However you are doing it, it’s working!!
We intend to keep the survey open for the foreseeable future as there are still responses coming in on a daily basis. Could we ask you to continue advertising it so we can ensure that when it comes to the analysis we have the best sample size possible. This, we believe, is a really important piece of work to help all of us understand and thus help children and young people with lymphoedema.
The links to the survey are:-
With best wishes,
Susie Murray on behalf of the Lymphoqol team.