About the Health-Related Quality of Life (HRQoL) Sub-Study: The aim of this sub-study is to help us understand how much the toxicities that happen during treatment impact the quality of life of children with ALL and their families. This will allow us to develop better support strategies for children and their families.
What does participation involve? Participation in the HRQoL Sub-Study is optional, and parents of children 5-18, as well as children 8-18 years, are eligible to participate. After consenting to participate in the ASSET Registry Study, parents and their children are invited to participate in the HRQoL Sub-Study.
Once they consent to participate, parents will receive a welcome email from the study team, which will include contact information if they have any questions. If the child is 8 years of age or older at the time of study enrolment, he or she will also be invited to complete the survey at the same time point as their parent.
Parents/children are invited to complete surveys every two months, for the first two years of the child's treatment, and surveys every 6 months for 3 years following that, through the child's completion of treatment. We expect these surveys will take 15-30 minutes to complete. We ask young people and their parents to fill in these surveys so we can understand their/their child’s quality of life in relation to their treatment side effects. If parents or young people feel upset or distressed while answering the questionnaires, they will be able to indicate whether they would like further support and a member of the research team will contact them to have a chat.
The surveys ask questions about: 1.Parents' and children's emotional well-being 2.Parents' and children's healthcare satisfaction 3.The impact of children's physical health on their daily activities 4.Use of supportive resources, such as psychologists or social workers
We hope that the results of this sub-study will help us to tailor support strategies to meet the needs of children diagnosed with ALL and their families.
