Feasibility found for outcome measures at pediatric specialty clinics

A new study published in JAMA Network Open has highlighted feasibility and acceptability for collecting EuroQoL 5-Dimensional Questionnaire for Youth, 5 Levels (EQ-5D-Y-5L), in routine outpatient specialty care.¹

Overall health-related quality of life (HRQOL) is often measured in children using pediatric patient-reported outcome measures (P-PROMs) completed by either the child or a caregiver.² These measures are often used in clinical trials, routine specialty pediatric clinical care, and adult chronic care.¹

“There is a lack of clarity regarding the potential impacts of P-PROMs on specialty clinical care,” wrote investigators.

Implementing the EQ-5D-Y-5L

The study was conducted to determine the feasibility and acceptability of a P-PROM for children receiving outpatient care at specialty clinics. Participants included pediatric patients aged 4 to 17 years with a specialty appointment between February 19 and May 14, 2025. These patients were randomly assigned 1:1 to an intervention or control group.

Exclusion criteria included being unable to communicate in English and having a “social flag” in the electronic medical record (EMR). Clinicians were also invited to participate in the study, codesigning the intervention alongside patients and parents.

Based on its short length and prior qualitative work, the EQ-5D-Y-5L was used for the intervention. This P-PROM contained 5 items including mobility, self-care, usual activities, pain or discomfort, and worried, sad, or unhappy.

Outcomes and participant demographics

Patients completed the EQ-5D-Y-5L up to 7 days before their appointment through the EMR patient portal. If deemed capable by their caregivers, children aged at least 7 years could complete the questionnaire themselves. Additional caregiver surveys were completed at baseline, 1 days after the appointment, and 4 weeks after the appointment.

The acceptability and feasibility of the EQ-5D-Y-5L for patients, caregivers, and clinicians were reported as the primary outcome. Survey questions were used to evaluate acceptability, while feasibility was determined based on P-PROM completion rates. Discussion of relevant HRQOL domains was reported as the secondary outcome.

There were 43 patients randomly assigned to the intervention arm and 44 to the control arm. Completion of the 1-day follow-up survey was reported by 86.2% of this population and 4 weeks of follow-up surveys by 83.9%. Patients were aged a mean 8.8 years while their caregivers were aged a mean 41.8 years.

Acceptability among caregivers, clinicians, and patients

EQ-5D-Y-5L was reported acceptable or completely acceptable by 89.2% of caregivers and 64.3% of clinicians. However, a desire to use this P-PROM in the future was reported by only 51.4% and 35.7%, respectively.

The burden of completing EQ-5D-Y-5L was also acceptable, with 85.7% of caregivers and 90.9% of clinicians reporting that it took little to no effort. This was supported by 77.8% of patients reporting it was easy or very easy.

Only 51.4% of caregivers found the P-PROM to be useful, vs 63.6% of clinicians. However, it helped 66.7% of children speak with their clinician. Areas of intervention deemed less acceptable included clinician confidence in using P-PROMs and clarity about how the intervention can improve care.

Feasibility and HRQOL outcomes

Significant feasibility was reported, with 93% of patients in the intervention arm completing the P-PROM. Of these, 40% completed it on paper. Clinicians also reported how much time EQ-5D-Y-5L added to the appointment, with 9.1% saying no time, 36.4% 1 to 2 minutes, 27.3% 5 to 8 minutes, and 27.3% 8 to 10 minutes.

HRQOL data was available for 98.6% of patients, with no differences in HRQOL reported between baseline and follow-up among either the intervention or control arm. Mean differences were 0.004 and –0.014 in these groups, respectively.

At baseline, the intervention group had a significantly greater mean HRQOL score vs the control group, at 0.71 vs 0.66, respectively. Overall, this data highlighted the feasibility and acceptability of EQ-5D-Y-5L among patients, caregivers, and clinicians.

“Further research should explore, in an adequately powered trial, the quantitative impacts of the intervention on quality of care and outcomes as well as impacts over time,” wrote investigators.

References

1. Jones R, Devlin N, McLean K, 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. doi:10.1001/jamanetworkopen.2025.58973
2. Huang IC, Revicki DA, Schwartz CE. Measuring pediatric patient-reported outcomes: good progress but a long way to go. Qual Life Res. 2014;23(3):747-750. doi:10.1007/s11136-013-0607-2