A new survey to measure how localized scleroderma affects children and adolescents

Summary Localized scleroderma, also called morphoea, is a rare condition affecting about three in 100,000 people. It typically causes changes to the skin and underlying tissue, sometimes as deep as the muscle or bone. The authors, from the U.S.A., wanted to develop a survey that would let children and adolescents tell researchers and doctors about how localized scleroderma affects their daily life. The authors first identified a number of important ways localized scleroderma can affect children and adolescents. They then created survey questions asking about these problems. Next, the authors had children and adolescents with localized scleroderma fill out the survey to see if they could read and understand the questions and instructions. The authors also asked children if there were any questions missing from the survey. The authors found that overall the survey performed well. Children and adolescents aged 8‐18 years could read the questions and understand the survey. Children and adolescents also suggested that three questions be added to the survey to make it more complete. The final version of the survey included questions about how a child's skin feels (e.g. if it hurts or itches), limitations in their daily activities, how they feel about their body, their relationships with friends and strangers, and finally how their medications make them feel. This survey, The Localized Scleroderma Quality of Life Instrument, is the first of its kind. Doctors and researchers can use it to better understand what life is like for children and adolescents with localized scleroderma. This is a summary of the study: A novel patient‐reported outcome for paediatric localized scleroderma: a qualitative assessment of content validity