ArticleScandinavian journal of caring sciences2026
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.
Article in Scandinavian journal of caring sciences, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
1 citing paper in PubMed.
- 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.Scandinavian journal of caring sciences · 2026Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
9 authors.
Funding
Abstract
introductionTo 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).
methodsWe 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.
resultsFrom 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).
conclusionFeedback 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.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.