Introduction: To provide appropriate interventions for young people with advanced cancer, self-reported questionnaires assessing quality of life (QoL) are crucial. This study aims to develop and test electronic versions of two short self-reported questionnaires (for children aged 8–12 and adolescents aged 13–18).
Methods: We adapted the paper-and-pencil versions of Advance QoL into electronic versions using the REDCap platform. We tested the electronic versions and evaluated their social validity (acceptability, relevance, and satisfaction) through semi-structured cognitive interviews with 20 children (median age 9) and adolescents (median age 15) with cancer. Recruitment and data collection involved two refinement phases, using cognitive interviews to guide adaptations. To analyse responses from the social validity questionnaire, we used the content validity index (CVI), median and range.
Results: From the interviews, we identified 22 codes, organised into five themes: (1) content-related elements, such as lack of information regarding a radar chart displayed in the questionnaire; (2) format-related elements, including the unnoticed 24-h time window; (3) technology-related elements, such as the correct date format; (4) positive features (e.g., length, comprehensiveness, user-friendliness); and (5) children-specific elements such as distractibility and attention spans. These insights guided modifications to optimise Advance QoL‘s electronic use. CVI indices showed high social validity among the participants (children: two out of three CVI indices were ≥ 0.78; adolescents: all three CVI indices were ≥ 0.78).
Conclusion: Feedback was largely positive. We addressed minor issues using REDCap’s features. In its present state, Advance QoL is comprehensible, usable, and considered pertinent by patients. It offers a unique opportunity to collect the self-reported data of a very ill population, thereby providing targets for care.