Adaptation and validation of a patient-reported outcome measure capturing Long COVID symptom burden in adolescents: The Symptom Burden Questionnaire for Long COVID in Young People (SBQ-LC-YP)

What s the problem? Long-term symptoms of COVID-19 infection are called 'Long COVID'. Up to 14% of children and young people who catch COVID-19 have Long COVID symptoms 3-months later. People with Long COVID report over 200 different symptoms. Long COVID questionnaires are available for adults, but these do not measure impacts unique to young people such as effects on schoolwork or development. There are no Long COVID symptom questionnaires for young people. What s the solution? The Symptom Burden Questionnaire™ for Long COVID measures Long COVID symptoms in adults. It was designed with patient input according to international guidance. We aim to adapt this questionnaire to make it suitable for young people (11-17 years). Adapting this questionnaire will help understand Long COVID in young people and be used to see if treatments work. How will we do this? First, we will adapt the questionnaire to make sure it includes symptoms important to young people. Second, we will test the questionnaire to understand how well it measures Long COVID symptoms. Part 1: 15-20 healthcare professionals, researchers, parents, and adults with Long COVID will review the questionnaire to check if it is suitable for young people. We will remove unsuitable questions and add new questions if needed. We will interview 28 young people with Long COVID (aged 11-17 years) and their parents/carers (n = 28). A young person can choose to be interviewed with their parent/carer or on their own. Each young person will complete the questionnaire. They will tell us what it was like to answer the questions and if the questions ask about symptoms important to them. We will ask if anything important is missing. We will ask parents/carers for their views. We will use this information to adapt the questionnaire. Part 2: 500 young people with Long COVID and 250 parents/carers will answer the adapted questionnaire using their mobile phone, computer, or paper form. We will use their answers to improve the questionnaire's design and to describe how well it measures Long COVID symptoms in young people. We will do this using statistical tests. Patient and public involvement and engagement People with Long COVID helped to design this research. Young people with Long COVID and parents/carers will work with us on each part of the study. How will we share the results? We will present the results at conferences and publish them in a scientific journal. We will share them with young people, parents/carers, schools, health professionals, and the public. The questionnaire will be available for researchers and healthcare professionals to use. They can use the questionnaire in research studies and in clinics to measure the impact of Long COVID and to find out if treatments for Long COVID work.