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  • Feasibility of using patient-reported outcome measures with visually impaired children/young people attending paediatric ophthalmology clinics

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Original research
Feasibility of using patient-reported outcome measures with visually impaired children/young people attending paediatric ophthalmology clinics
  1. Alexandra O Robertson1,
  2. Valerija Tadić2,
  3. Mario Cortina-Borja1,
  4. Jugnoo Rahi1,3,4,5
  5. For the Child Vision PROMs group
    1. 1 Population, Policy and Practice Research and Teaching Department, UCL Great Ormond Street Institute of Child Health Population Policy and Practice, London, UK
    2. 2 School of Human Sciences, University of Greenwich, London, UK
    3. 3 Great Ormond Street Hospital NHS Foundation Trust, London, UK
    4. 4 National Institute for Health Research (NIHR) Biomedical Research Centre at Moorfields Eye Hospital NHS Foundation Trust and UCL Institute of Ophthalmology, London, UK
    5. 5 Ulverscroft Vision Research Group, London, UK
    1. Correspondence to Professor Jugnoo Rahi, Population, Policy and Practice Research & Teaching Department, UCL Great Ormond Street Institute of Child Health Population Policy and Practice, London, UK; j.rahi{at}ucl.ac.uk

    ABSTRACT

    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
    • measurement
    • ophthalmology
    • paediatric practice
    • patient perspective

    Data availability statement

    Data are available on reasonable request. Aggregated data are available on request to the corresponding author.

    https://doi.org/10.1136/archdischild-2020-318991

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      Data availability statement

      Data are available on reasonable request. Aggregated data are available on request to the corresponding author.

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      Footnotes

      • Twitter @alexrobertson20

      • 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.

      • Provenance and peer review Not commissioned; externally peer reviewed.

      • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.