Developing and Testing Electronic Versions of the Advance QoL Tools for Collecting Self-Reports of Quality of Life in Children and Adolescents With Advanced Cancer.
Lye-Ann Robichaud, Nikita Guarascio, Michel Duval and 6 others
PMID 41486367WHAT IT FOUND
Children and adolescents with cancer found electronic quality-of-life questionnaires easy, clear, quick and motivating, but some preferred paper because typing was hard.
Nurses can offer both formats and check timing, setting and ability to self-report.
Key findings
01Young people generally agreed or strongly agreed that the electronic questionnaire was acceptable, relevant, clear and useful, but children's ratings varied more than adolescents'.
02Young people found the electronic Advance QoL versions easier, clearer, quicker and more motivating than paper, but some preferred paper because of handwriting.
03The main technical problem was a date field that required a specific format and blocked progress; it was resolved between rounds.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
The sample was small and selected by convenience, so it may not represent young people with advanced cancer. Eligibility was broadened beyond advanced cancer, so the findings may not apply exactly to the intended advanced cancer group. Participants completed the questionnaire during a recorded interview, not in usual care, so real-world use is not proven. No girls were recruited in the child age group. The autonomy domain may reflect a North American perspective. The authors say validity, reliability and sensitivity still need study. Some children needed help typing or had a parent present, which may have influenced answers.
Declared interests
The study was funded by Fondation du CHU Sainte-Justine, Réseau québécois de recherche en soins palliatifs et de fin de vie, Coast-to-Coast Canada Foundation, and Canadian Institutes of Health Research. The authors declared no conflicts of interest.
The easy way to misread this
Do not read this as proof that the electronic questionnaire improves care or has been validated. It was a small usability test with convenience sampling, and the authors say validity, reliability and sensitivity still need study.