Pediatrics · Medical Literature
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.
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 .
Clinical relevance
Among paediatric outpatients and their caregivers, as well as the clinicians who care for them, what are the qualitative experiences of participating in a pilot program that integrates the EQ-5D-Y-5L generic Paediatric Patient Reported Outcome Measure (P-PROM) into routine outpatient clinical care? __SNAPSHOT__ {"studyDesign":"Qualitative sub-study (semi-structured interviews and focus groups) nested within a pilot feasibility and acceptability randomised clinical trial (ISRCTN16030620)","setting":"Paediatric outpatient care setting; country not explicitly reported in abstract (contextually consistent with Australia based on the broader P-PROM ROCK program literature); interviews conducted both online and in-person","sampleSize":"n=16 total participants: 9 patient/caregiver interviews; 2 clinician focus groups (n=7 clinicians)","population":"Patients/caregivers who received, and clinicians who delivered, the P-PROM ROCK Program within the parent pilot randomised clinical trial; specific patient age range, diagnoses, and clinical subspecialties not reported in abstract","intervention":"The P-PROM ROCK Program: a co-designed implementation package comprising the EQ-5D-Y-5L instrument, a personalised PROMpt (flagging tool allowing patients/caregivers to identify items for clinician discussion), patient and clinician resources, clinician decision support tools, and electronic health record integration","comparator":"Not applicable (qualitative thematic analysis of experiential data; no quantitative comparator arm assessed in this sub-study)","primaryOutcome":"Qualitative themes capturing patient/caregiver and clinician experiences with feasibility, acceptability, and perceived impact of the P-PROM ROCK Program in routine outpatient care, derived via thematic analysis","followUp":"Interviews and focus groups conducted over approximately two months (April–June 2024); duration of individual participation in the parent trial not reported in abstract","fundingSource":"Not reported in abstract"}
Key findings
This qualitative sub-study identified several convergent themes across patient/caregiver interviews and clinician focus groups. First, the simplicity and ease of use of the co-designed P-PROM ROCK Program—encompassing the EQ-5D-Y-5L questionnaire, personalised PROMpt, supporting resources, and system integration—was identified as critical to program completion and uptake in clinical care. Second, when P-PROM results were actively discussed during appointments, participants reported improved patient-clinician communication, more holistic care, and new parental perspectives on their child's health. Third, important barriers were identified: P-PROM results were not consistently reviewed in appointments, and participants recommended implementing reminder systems to mitigate this gap. Short appointment durations and narrow specialty-specific clinical scope were also perceived as structural barriers to holistic care delivery. Fourth, both patient/caregiver and clinician participants felt the pilot intervention period was too brief to fully evaluate its benefits and limitations. No quantitative outcome data, effect sizes, p-values, or confidence intervals were generated or reported in this qualitative sub-study. NNT/NNH are not applicable.
Practice implications
This study establishes that a carefully co-designed, system-integrated P-PROM program using the EQ-5D-Y-5L is perceived as feasible and acceptable by both paediatric patients/caregivers and clinicians in a routine outpatient setting. Perceived benefits—improved communication, holistic care, and caregiver insight—were contingent on active clinician engagement with PROM results during the clinical encounter; passive collection without discussion appeared insufficient. The study does not establish clinical effectiveness, does not demonstrate impact on health outcomes, and does not determine whether quality of life or patient satisfaction measurably improved. Generalisability is substantially limited by the very small sample (n=16), the brief pilot period, and the fact that the patient age range, diagnoses, and clinical subspecialties represented are not reported in the abstract. Findings apply to settings where implementation support, co-designed resources, and electronic integration are available; resource-limited or high-volume outpatient environments may face additional structural barriers. Only the abstract was available for this review, which limits the ability to assess sampling strategy, data saturation, participant demographics, and full thematic detail. Practice should not change on the basis of this study alone; it should be viewed as hypothesis-generating and informative for the design of a larger, adequately powered implementation trial. __LIMITATIONS__ Extremely small qualitative sample (n=9 patient/caregivers; n=7 clinicians in 2 focus groups), raising concerns about data saturation and representativeness,Participants were self-selected from a pilot RCT, introducing likely volunteer and satisfaction bias toward more favorable experiences,Brief pilot intervention period: participants explicitly reported insufficient time to assess the program's full benefits and limitations,P-PROM results were not consistently discussed in appointments, creating heterogeneity in the 'exposure' experienced by participants,Patient age range, clinical diagnoses, and subspecialties are not reported in the abstract, precluding assessment of generalisability,No quantitative outcomes collected; findings are experiential and cannot be used to infer clinical effectiveness,Focus group data relied on detailed notes rather than verbatim transcripts, which may introduce summarisation bias,Setting (likely a single institution in Australia) may limit generalisability to different health systems, resource environments, or cultural contexts,Funding source not reported; potential conflicts of interest cannot be assessed,Only the abstract was available for this review; full methodological detail including COREQ reporting, sampling strategy, and member-checking cannot be evaluated __BOTTOM_LINE_CATEGORY__ promising_but_preliminary __BOTTOM_LINE__ This small qualitative sub-study suggests that a co-designed, system-integrated EQ-5D-Y-5L P-PROM program is perceived as feasible and acceptable by paediatric outpatient families and clinicians, with potential to improve communication and care holism when results are actively discussed. Structural barriers—including inconsistent result review, time-limited appointments, and narrow specialty scope—require mitigation before broader implementation. Confirmation in a larger, adequately powered implementation trial with objective clinical and patient-reported outcome endpoints is needed before practice change can be considered.