ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2025
"If we ask, we must act": co-designing the implementation of the EQ-5D-Y-5L as a Paediatric Patient Reported Outcome Measure in Routine hospital Outpatient Care for Kids to meaningfully impact clinical visits (P-PROM ROCK Phase 2).
Article in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.
What it found
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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.
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Who cites it
3 citing papers in PubMed.
- Qualitative insights from patient/caregivers, and clinicians on routine use of the EQ-5D-Y-5L in clinical paediatric care-results from a pilot feasibility and acceptability trial.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026Trial
- Use of Parent- and Patient-Reported Outcome Measures in Pediatric Specialty Clinics: A Pilot Randomized Clinical Trial.JAMA network open · 2026Trial
- Challenges with interviewer administration of EQ-5D questionnaires in a large-scale population survey in China: a qualitative analysis.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026Article
Corrections and comments
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Authors and funding
21 authors.
Funding
Abstract
purposeTo co-design use of the EQ-5D-Y-5L, a generic Paediatric Patient Reported Outcome Measure (P-PROM), in Routine Outpatient Care for Kids (ROCK), maximising its impact on patient-clinician visits.
methodsThis Phase 2 co-design study was guided by the co-design framework for public service design and Double Diamond model. Data collection involved facilitated workshops (building on Phase 1), followed by feedback and optimisation sessions. Participants included service providers (doctors, nurses, allied health and medical record staff), adolescents, and caregivers with lived experience of providing or receiving outpatient care at a tertiary paediatric hospital in Australia.
resultsFive co-design workshops, nine feedback, and two optimisation sessions were conducted with nine service providers, two adolescents, and three caregivers. Co-design participants created resources to introduce EQ-5D-Y-5L as a 'general health tracking questionnaire' and explain its purpose. EQ-5D-Y-5L responses were designed to be displayed by item. A display of results over time was also designed. A patient empowerment approach was taken with regards to flagging specific EQ-5D-Y-5L items for discussion with clinicians, whereby patients or caregivers control which items are flagged. To ensure clinical review and action of EQ-5D-Y-5L responses, resources, including clinician training, clinician decision support tool, and matching patient booklet and resource pathway, were co-designed. Combined, these design elements make up the P-PROM ROCK Program.
conclusionConsumer engagement produced important insights that would've otherwise been missed, ensuring the P-PROM ROCK Program empowers patients. For generic P-PROMs to meaningfully impact patient-clinician visits, supports and resources are required to ensure clinical review and action.
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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 Socratic graph.