Objective To explore feasibility of using child/young person patient-reported outcome measures (PROMs) routinely in practice, using vision-specific instruments and paediatric ophthalmology as the exemplar.
Methods Participants comprised patients aged 8–17 years, with visual impairment or low vision (visual acuity of the logarithm of the minimum angle of resolution (logMAR) worse than 0.3 in the better eye), attending the Department of Ophthalmology at Great Ormond Street Hospital, London, UK. All participants completed age-appropriate PROMs before attending their outpatient appointment. Half were randomly assigned to completion at home, with the choice of paper-and-pencil or electronic format. The other half were invited to complete PROMs during their hospital appointment, and randomly assigned to completion format. All participants completed a face-to-face survey exploring their attitudes and preferences. Analysis comprised survival analysis, and direct comparisons of proportions, with complementary qualitative data analysis.
Results 93 patients participated. 48 (98%) completing PROMs at home chose the paper-and-pencil format. Completion at home took longer than at hospital (median=20, vs 14 min, p<0.001). Visual acuity was associated with completion time (p=0.007) and missing data (p=0.03). Overall, 52 (60%) reported a preference for completion at home but there was no clear preference for format (37 (43%) preferred either format).
Conclusion PROM completion at home ahead of hospital appointments may be preferable for collecting complete, high-quality datasets. Despite equipoise on preference for format, the majority of those completing at home chose the traditional paper-and-pencil format, despite impaired sight. These findings should inform implementation of child/young person PROMs into routine practice.
- general paediatrics
- paediatric practice
- patient perspective
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Collaborators Child Vision PROMs group (Ameenat Lola Solebo, Phillippa Cumberland, Naomi Dale, Peng Tee Khaw, Gillian Lewando-Hundt, Alki Liasis, Anthony Moore and Alison Salt) and the study advisory group (Corie Brown, Jackie Osborne, Paula Thomas and Jude Thompson).
Contributors JR and VT conceptualised and designed the study. AOR designed the survey, prepared materials, recruited participants and collected all data. AOR and MC-B performed data analysis. The manuscript was written by AOR, VT and JR, with MC-B contributing to the final version.
Funding This study was funded by the Great Ormond Street Children’s Charity (ref. V0418). It was undertaken at the University College London (UCL) Great Ormond Street Hospital Institute of Child Health and Great Ormond Street Hospital, which receive a proportion of funding from the Department of Health’s National Institute for Health Research (NIHR) Biomedical Research Centres funding scheme. Members of the team are supported by the Ulverscroft Foundation. JR is an NIHR Senior Investigator.
Disclaimer The views expressed in this article are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.
Competing interests None declared.
Patient consent for publication Not required.
Ethics approval The study was approved by the National Health Service Research Ethics Committee for UCL Great Ormond Street Institute of Child Health and Great Ormond Street Hospital, London, UK (REC reference: 17/LO/1484) and followed the tenets of the Declaration of Helsinki.
Provenance and peer review Not commissioned; externally peer reviewed.
Data availability statement Data are available on reasonable request. Aggregated data are available on request to the corresponding author.
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