Children with Cancer (under 8 years old)

Care for childhood cancer(s) has greatly improved over the last decades exceeding 85% 5-year survival in countries with optimal health-care resources. Although treatment regimens are optimized to reduce unpleasant side effects, many paediatric cancer patients still experience significantly decreased physical, mental, emotional, and social health due to their disease and its treatment. The assessment of health-related quality of life (HRQOL) is a critical outcome measure for anti-cancer treatment in children. Research has indicated that children as young as 5 years old can reliably and validly self-report if age-appropriate instruments are being used. However, questionnaires have to be age-specific and developed in accordance with the child’s developmental stage.

While several questionnaires have been developed to assess the health-related quality of life (HRQoL) in children with cancer, recent research has highlighted several issues in terms of content validity and questionnaire development. A systematic review on self-reporting in children younger than 8 years in particular, raised concerns about the internal consistency, reliability, and validity of PRO measures for this age-group. Based on the research evidence, age-appropriate EORTC QLG tools are required to assess the HRQOL of children with cancer aged below 8 years. For children below 5 years, we propose an ObsRO-version only, while for children 5 to < 8 years, a PRO and ObsRO version should be available.

The current study is designed to capture the HRQoL issues relevant and important to children with cancer. This study will also provide an evaluation of optimal response formats for children aged 5-8 years to inform recommendations to the EORTC Quality of Life group (QLG) on a suitable HRQoL assessment approach for this age group.

• The systematic review to identify possible relevant issues for children < 8 years has been completed.
• Memory Cards and a body chart have been designed to facilitate interviews with children < 8 years.
• One collaborating centre has started recruitment with the remaining collaborating centres working on their ethics applications.

Current status:

Phase 1. We are conducting the interviews with children, parents and HCPs to identify the most relevant HRQoL issues for children with cancer below 8 years.

• We expect to publish the results of the systematic review by 2026
• We expect to be finished with recruitment in all collaborating centres by June 2026
• We expect to start Phase 2 by September 2026

For further information about the study or to express an interest in collaboration, please contact:

David Riedl  david.riedl@i-med.ac.at

Anne-Sophie Darlington A.Darlington@soton.ac.uk

Treatment for children with cancer has improved greatly over the last decades. Thus, it is important to find out how these effective treatments affect the children’s physical and mental well-being too. A good way to find this out is to use questionnaires. Although several questionnaires have been specifically developed for children with cancer, some researchers are unsure if they include all important aspects. For this study, we will look at existing questionnaires and studies to find out if they include all aspects that are important to children with cancer. Additionally, we will talk with children with cancer, their parents and their doctors to find out if there is anything we might not have covered so far.