Aim: 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.
Methods: 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.
Results: 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.
Conclusion: 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.
Trial registration: ISRCTN16030620, https://www.isrctn.com/ISRCTN16030620 .
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