THE SOLE QUESTIONNAIRE: DEVELOPMENT AND VALIDATION OF A NEW INSTRUMENT FOR MEASURING QUALITY OF LIFE IN CHILDREN WITH NEUROMUSCULAR DISORDERS

Improving quality of life is one of the main objectives of medicine. This is particularly true in the case of chronic pathologies, such as childhood-onset neuromuscular diseases. While numerous instruments are available for evaluating quality of life in adults, few such instruments exist that can be applied in children. The aim of our study is to develop and validate a new instrument designed to measure quality of life in children: the SOLE (Strips of Life with Emoticons) Questionnaire. In developing this questionnaire, we decided to focus on the most significant moments in a childs day and to represent them in cartoon strips drawn by an illustrator of childrens books. Faced with these different situations, the child is required to indicate how he feels by applying stickers showing facial expressions representing, very simply, basic emotions. Through administration of this questionnaire, which children are likely to see as a game, we feel that it should prove possible to gather directly childrens own feelings, even those of very young and less intellectually developed children, regarding their quality of life. Our project will involve a number of centres highly experienced in the diagnosis and treatment of neuromuscular diseases in childhood, and the aim is to administer a preliminary version of our SOLE Questionnaire to a group of children and teenagers (aged 5-18 years) affected by neuromuscular disorders – a group large enough to give us the input we need to create the definitive version of the instrument and to validate it through appropriate statistical analysis techniques.It is thus hoped to put at the disposal of the medical community a new instrument evaluating childrens quality of life, both as their neuromuscular disease progresses and in the context of clinical and drug trials. It will be possible, in the future, to create variants of the SOLE Questionnaire, specifically designed to evaluate quality of life in other chronic childhood diseases.