Parent- and paediatric patient-reported outcome measure show promise in specialist care

Integrating parent- and paediatric patient-reported outcome measures (P-PROM) into routine specialist paediatric outpatient clinics is feasible and acceptable to caregivers and clinicians, according to a pilot trial, but wider implementation will require refinement and further evaluation.

Research conducted between February and June 2024, and published in JAMA Network Open, assessed the feasibility and acceptability of implementing a generic P-PROM at the point of care and explored its impact on quality of care and child health-related quality of life (HRQOL).

The measure used was the EuroQol 5-Dimensional Questionnaire for Youth, 5 Levels (EQ-5D-Y-5L), a standardised tool that captures children’s self-reported or proxy-reported HRQOL across five domains: mobility, self-care, usual activities, pain or discomfort, and anxiety or depression – each rated on five levels of severity.

Determining HRQOL

The non-blinded, parallel-group trial was conducted across four specialist outpatient clinics for children with asthma, sleep disorders, encopresis and chronic constipation at The Royal Children’s Hospital in Melbourne, Victoria, Australia.

Of 170 eligible children aged four to 17 years, 87 (51.2%) were randomised to either the P-PROM intervention group (n=43) or standard care (n=44).

The eligible cohort included 44 girls (50.6%), with a mean age of 8.8 years. Caregivers (n=37) were predominantly female (94.3%) and had a mean age of 41.8 years. A total of 14 clinicians, including physicians and nurses, participated and reported a mean of 9.7 years’ experience in specialist clinics.

Children or caregivers in the intervention arm completed the EQ-5D-Y-5L via an online portal up to seven days before their appointment or on paper in the waiting room ahead of the appointment if this was not possible.

Responses were integrated into the electronic medical record and flagged for discussion during consultations, with clinicians receiving training, clinical decision support and resources to support patient actions.

The control group received standard outpatient care without the use of the P-PROM.

P-PROM supported consultation discussions

Feasibility was high, with 93.0% (40/43) of intervention participants completing the P-PROM. Of those who completed the questionnaire, 63.2% selected at least one domain for discussion, with pain or discomfort being the most selected (31.6%).

Acceptability was reported by 89.2% of caregivers and 64.3% of clinicians, although fewer participants expressed a desire to continue using the tool (51.4% of caregivers and 35.7% of clinicians).

Use of the P-PROM was associated with increased discussion of relevant HRQOL domains, particularly pain, and higher caregiver-reported satisfaction with clinicians (mean score 93.1 vs 85.9 in controls; mean difference 7.2; P=0.02).

Emotional support scores were also higher in the intervention arm (mean difference 6.4; P=0.04). No significant changes in child HRQOL were observed over the four-week follow-up period.

Clinicians reported that the P-PROM added between one and 10 minutes to consultations, and 27.3% felt it interfered with appointment priorities. However routine use of the EQ-5D-Y-5L in paediatric specialist care was generally deemed to be practical and was well-received.

As a small, non-blinded pilot study, the trial was not powered to detect differences in secondary outcomes. The authors also flagged short follow-up, potential changes in clinician behaviour across study arms, exclusion of non-English-speaking families, and a reliance on study team support as further limitations.

They also acknowledged the need for a larger, adequately powered trial with extended follow-up to evaluate effects on clinical outcomes, HRQOL and service delivery over time.

Additionally, further refinement of the P-PROM is needed to enhance clinician confidence and facilitate integration into workflows, the authors added.

Reference
Jones R et al. Use of Parent- and Patient-Reported Outcome Measures in Pediatric Specialty Clinics. A Pilot Randomized Clinical Trial. JAMA Netw Open 2026;9(2):e2558973.