Development of an age specific EORTC questionnaire to assess the health-related quality of life (HRQOL) of children with cancer aged 8–14 years – a mixed-methods content elicitation phase I & II EORTC QLG study

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BACKGROUND: Experiencing cancer can be physically and psychosocially challenging in the short- and long-term. Integrating Patient-Reported Outcome Measurements (PROMs) to capture these challenges can support patient-centered care and may reduce morbidity and mortality. However, age-appropriate tools remain scarce for children and adolescents. We report on the development phases I/II of the EORTC QLQ-CHI questionnaire tailored for children 8-14 years. METHODS: Following the EORTC QLG module development guidelines, qualitative semi-structured interviews were conducted in children aged 8-14 years undergoing active cancer treatment, parents and healthcare professionals (HCPs). Participants rated the relevance of issues identified in a previous systematic review (Phase Ia) and provided preferences on response format and recall period (Phase Ib). During expert round tables, key issues were converted into items (Phase II). RESULTS: Interviews were completed with 47 children, 45 parents, and 22 HCPs from six countries. Among all children (mean age=10.8 ± 1.9 years; 57.4% female), 55.3% had haematological cancers. Of the initially identified issues, 57 were identified as key issues by comparing children's, parents' and HCPs feedback. Children preferred four response options (70.0%) and a shorter recall period (43.3%). Through expert round tables (Phase II), items were assigned to a more symptom-oriented core scale and an additional scale for psychosocial concerns. The provisional questionnaire consists of 50 items. CONCLUSION: This study represents the first step in developing the EORTC QLQ-CHI (8-14 years). Next steps include pilot testing, validation (Phase III and IV), co-development of a corresponding measure for children < 8 years and an observer-rating version.

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