# 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

## TL;DR

A study explored how a health questionnaire for children, called EQ-5D-Y-5L, was accepted and used in clinical care, finding it improved communication and care when used properly.

## Contribution

The study provides qualitative insights into the feasibility and acceptability of using the EQ-5D-Y-5L questionnaire in pediatric clinical care.

## Key findings

- The simplicity and ease of the P-PROM ROCK Program were critical for its completion and use in clinical care.
- Discussing questionnaire results during appointments improved communication and provided new perspectives on children's health.
- Short appointments and lack of reminders were barriers to fully utilizing the questionnaire's benefits.

## Abstract

To qualitatively understand the experiences of patient/caregivers, and clinicians of piloting a generic Paediatric Patient Reported Outcome Measure (P-PROM), the EQ-5D-Y-5L, in Routine Outpatient Care for Kids (ROCK), known as the P-PROM ROCK Program.

Semi-structured interviews and focus groups were conducted online and in-person between April-June 2024. Participants were eligible if they received (patient/caregiver) or delivered (clinician) the P-PROM ROCK Program in the pilot feasibility and acceptability randomised clinical trial. Interviews were audio recorded and transcribed. Detailed notes were generated for focus groups. Transcripts and notes were coded and summarised into themes using thematic analysis.

Nine interviews (n = 9 patient/caregivers) and two focus groups (n = 7 clinicians) were conducted. Participants shared that the simplicity and ease of the co-designed P-PROM ROCK Program (including EQ-5D-Y-5L, personalised PROMpt, patient and clinician resources, and integration with systems) was critical to completion and use of EQ-5D-Y-5L in clinical care. When P-PROM results were discussed in appointments, participants shared how this improved communication, resulted in more holistic care, and provided parents with new perspectives on their child’s health. P-PROM results were not always discussed, and participants suggested reminder systems to minimise this. Additionally, short appointments and highly specialised clinical scope were barriers to holistic care. Finally, participants found the intervention too brief and wanted longer to better understand its benefits and limitations.

The simplicity and ease of P-PROM programs are essential to their uptake and impact in clinical care. The P-PROM ROCK Program requires further refinements and piloting to truly understand its impact.

ISRCTN16030620, https://www.isrctn.com/ISRCTN16030620.

The online version contains supplementary material available at 10.1007/s11136-026-04202-2.

Child health questionnaires ask about a child’s overall health and wellbeing. These questionnaires can sometimes be called ‘paediatric patient reported outcome measures’ or ‘health-related quality of life questionnaires’. They can be useful in clinical care as they provide doctors and nurses with information about how a child’s overall health is going from the patient’s view. Working with patient/caregivers and clinicians, we designed a way to use one of these questionnaires in routine clinical care. We then conducted a study to understand if asking patients to complete this questionnaire was acceptable and if it helped to improve the care they received. The point of this study was to talk with the children, parents and clinicians who took part in the study to understand their experiences. We found that it is acceptable to include these questionnaires in clinical care, especially when the questionnaire is simple and there are easy to understand resources available for families and clinicians. We also found that these questionnaires can help improve clinical care by making it more holistic. However, this is only possible when clinicians discuss the questionnaire responses with the family, which can sometimes be tricky when they are running short on time.

The online version contains supplementary material available at 10.1007/s11136-026-04202-2.