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.
Using interviews with 47 children receiving cancer treatment, 45 parents, and 22 healthcare professionals across six countries, the study developed a provisional 50-item EORTC health-related quality-of-life questionnaire for children aged 8–14 years.
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Using interviews with 47 children receiving cancer treatment, 45 parents, and 22 healthcare professionals across six countries, the study developed a provisional 50-item EORTC health-related quality-of-life questionnaire for children aged 8–14 years.
Research significance
The evidence supports the content-development stage of an age-appropriate patient-reported outcome measure; it is reasonable but not yet demonstrated to hypothesize that, after pilot testing and validation, the measure could identify symptoms and psychosocial concerns that inform supportive care, reduce morbidity, or improve treatment monitoring.
Source abstract
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.