A New Project …

FROM THE ROYAL FREE and UCL Medical School.

Silcworm Satisfaction In Life for Children With Own Report Measures What does this study hope to do? Quality of Life measures help to assess wellbeing. Currently there is no online child friendly measure to assess the quality of life of children aged 4 to 10 that can be used to help assess the treatment of their long term medical condition(s). We hope that this game will be useful in a clinical setting and be very popular with children given that it can be accessed online. The project has ethics approval from University College London (UCL). What can you expect from this study? As a parent/guardian you will be asked to complete a consent form on behalf of your child/children. You are welcome to see and play the game if you wish. If your child’s condition is not listed please enter it in the free text box at the side. If you wish to try the game yourself please write ‘test’ in the condition box.Your child/children will play the e-SILCWORM game on a website and give their feedback to a set of questions as they move through the game. We are looking for child volunteers who have been diagnosed with an illness/condition who are developing normally and are aged between 4-10 years. We are hoping to study around 1000 child patients in total. Please note that there are no risks and/or discomforts in relation to this research. We hope that children and their families enjoy taking part, as have families in similar projects in the past. The data obtained in this research project will be handled with complete privacy and access to research records shall be limited to the research team. Who shall benefit? The treatment of children who are exposed to on-going medical monitoring and treatment should be assessed in a thorough, but enjoyable, manner. Quality of life is now one such measure which can assess medical care. Therefore, we hope that e-SILCWORM will help medical and other allied health professionals to understand more about the effect of long term medical treatment for young children and therefore contribute towards their better care. If you have further questions and/or worries, please email silcworm@ucl.ac.uk.