Quality of Life in Short Stature Youth
How do short statured children and adolescents feel about themselves and how do their parents view their children’s quality of life?
The present handbook describes the development in psychometric testing of a questionnaire to assess the quality of life of children and adolescents with short stature and their parents. In a process conducted simultaneously in five countries, focus groups yielded relevant statements which were included in a preliminary questionnaire to be rated by patients and parents, then revised, forward and backward translated into the different languages and psychometrically assessed in a field test. The handbook provides an introduction into the intercultural development of instruments to assess patient reported outcomes. Using pediatric short stature as an example it demonstrates how such an instrument can be developed and implemented into clinical and research contexts.