September 2016
Volume 57, Issue 12
Open Access
ARVO Annual Meeting Abstract  |   September 2016
Patient-reported outcome measures (PROMs) of vision-related quality of life (VQoL) and functional vision (FV) for children and young people (CYP) aged 8-18 years.
Author Affiliations & Notes
  • Alexandra Robertson
    UCL Institute of Child Health , London, United Kingdom
  • Valerija Tadic
    UCL Institute of Child Health , London, United Kingdom
  • Gillian Hundt
    University of Warwick, Coventry, United Kingdom
  • Jugnoo S Rahi
    UCL Institute of Child Health , London, United Kingdom
    National Institute for Health Research (NIHR) Biomedical Research Centre at Moorfields Eye Hospital NHS Foundation Trust and UCL Institute of Ophthalmology, London, United Kingdom
  • Footnotes
    Commercial Relationships   Alexandra Robertson, None; Valerija Tadic, None; Gillian Hundt, None; Jugnoo Rahi, None
  • Footnotes
    Support  The Child Health Research Appeal Trust (CHRAT) studentship, Fight for Sight charity grant 1321/1322.
Investigative Ophthalmology & Visual Science September 2016, Vol.57, 5605. doi:
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      Alexandra Robertson, Valerija Tadic, Gillian Hundt, Jugnoo S Rahi; Patient-reported outcome measures (PROMs) of vision-related quality of life (VQoL) and functional vision (FV) for children and young people (CYP) aged 8-18 years.. Invest. Ophthalmol. Vis. Sci. 2016;57(12):5605.

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      © ARVO (1962-2015); The Authors (2016-present)

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Abstract

Purpose : Recently, we reported development and validation of 2 child-centred PROMs assessing VQoL and FV of CYP aged 10-15 years with visual impairment (VI). Here we report the initial qualitative stage of adaptation of the measures for a wider age range (8-18 years).

Methods : Subjects were CYP with VI, randomly selected from patient databases in 2 Ophthalmology Departments in London, UK.

Individual qualitative interviews were completed with 12 children aged 6-9 years and 17 young people aged 16-19 years. Qualitative analysis was conducted to identify areas of overlap, discrepancy and omissions in the existing measures. This resulted in development of new age-specific, and where necessary re-phrasing of existing items.

Individual cognitive interviews with 12 children aged 7-10 years and 15 young people aged 13-18 years, supplemented by parental feedback and the study group (Delphi) consensus was used to reduce, evaluate and refine the items in terms of importance, comprehensibility, difficulty and response format. The archived qualitative interviews from the foundation research with 10-15 year old CYP were re-read to re-examine the age-appropriate cut offs for the new instruments.

Results : The existing instrument content was largely relevant across a wider age range. Minor modifications were implemented to acknolwedge age-specific concerns and changes in number of and emphasis in the wording of items resulting in 2 age-specific suites of VQoL and FV instruments for 8-12 and 13-18 year olds. No changes were required in the response options format for either instrument. Both are scored using a 4-point Likert-type scale, ranging from 1 (not at all) to 4 (exactly) in the VQoL instrument and 1 (very easy) to 4 (very difficult ot impossible) in the FV instrument.

Conclusions : A developmentally-sensitive approach to constructing self-report PROMs to measure the impact of VI in childhood and adolescence is critical in order to accurately capture age-specific needs and concerns of visually impaired CYP. Following their upcoming piloting and validation ensuring the instruments are psychometrically robust, the new VQoL and FV measures for CYP aged 8-18 years will be suitable for routine use as adjuncts to objective clinical tests (e.g. acuity) and contribute to a comprehensive capture of the impact of VI on CYP.

This is an abstract that was submitted for the 2016 ARVO Annual Meeting, held in Seattle, Wash., May 1-5, 2016.

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