SynthesisThe patient2020
A Systematic Review of the Use and Quality of Qualitative Methods in Concept Elicitation for Measures with Children and Young People.
Synthesis in The patient, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers.
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
12 citing papers in PubMed.
- Measurement Properties and Quality of Maternal Breastfeeding Instruments: A Scoping Review.Journal of human lactation : official journal of International Lactation Consultant Association · 2026Article
- Measuring health-related quality of life in infants and toddlers: conceptual challenges and proposed recommendations.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026Article
- 'How low can you go?' Developers' perspectives on involving young children in the development of patient reported outcome measures.Journal of patient-reported outcomes · 2025Article
- Content validation of the Angioedema Quality of Life Questionnaire (AE-QoL) in a population of adult and adolescent patients with hereditary angioedema (HAE).Journal of patient-reported outcomes · 2025Article
- The adolescent experience of hereditary angioedema: a qualitative study of disease burden and treatment experience.Orphanet journal of rare diseases · 2025Article
- The development of a capability wellbeing measure in economic evaluation for children and young people aged 11-15.Social science & medicine (1982) · 2024Article
- A tradeoff between safety and freedom: Adults' lived experiences of ARFID.Journal of eating disorders · 2024Article
- Key Insights into Developing Qualitative Concept Elicitation Work for Outcome Measures with Children and Young People.The patient · 2024Article
- Is well-becoming important for children and young people? Evidence from in-depth interviews with children and young people and their parents.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2024Article
- User Comprehension and EHR Integration of theAMIA ... Annual Symposium proceedings. AMIA Symposium · 2024Article
- The role of parental health and distress in assessing children's health status.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2022Article
- Same same-but different: using qualitative studies to inform concept elicitation for quality of life assessment in telemedical care: a request for an extended working model.Health and quality of life outcomes · 2021Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
3 authors.
Funding
Abstract
backgroundQualitative research is recommended in concept elicitation for patient-reported outcome measures to ensure item content validity, and those developing measures are encouraged to report qualitative methods in detail. However, in measure development for children and young people, direct research can be challenging due to problems with engagement and communication.
objectivesThe aim of this systematic review was to (i) explore the qualitative and adapted data collection techniques that research teams have used with children and young people to generate items in existing measures and (ii) assess the quality of qualitative reporting.
methodsThree electronic databases were searched with forward citation and reference list searching of key papers. Papers included in the review were empirical studies documenting qualitative concept elicitation with children and young people. Data on qualitative methods were extracted, and all studies were checked against a qualitative reporting checklist.
resultsA total of 37 studies were included. The quality of reporting of qualitative approaches for item generation was low, with information missing on sampling, data analysis and the research team, all of which are key to facilitating judgements around measure content validity. Few papers reported adapting methods to be more suitable for children and young people, potentially missing opportunities to more meaningfully engage children in concept elicitation work.
conclusionsResearch teams should ensure that they are documenting detailed and transparent processes for concept elicitation. Guidelines are currently lacking in the development and reporting of item generation for children, with this being an important area for future research.
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What OpenQuestion holds
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.