Elsevier

Ophthalmology

Volume 120, Issue 12, December 2013, Pages 2725-2732
Ophthalmology

Original article
Development of the Functional Vision Questionnaire for Children and Young People with Visual Impairment: The FVQ_CYP

https://doi.org/10.1016/j.ophtha.2013.07.055Get rights and content

Objective

To develop a novel age-appropriate measure of functional vision (FV) for self-reporting by visually impaired (VI) children and young people.

Design

Questionnaire development.

Participants

A representative patient sample of VI children and young people aged 10 to 15 years, visual acuity of the logarithm of the minimum angle of resolution (logMAR) worse than 0.48, and a school-based (nonrandom) expert group sample of VI students aged 12 to 17 years.

Methods

A total of 32 qualitative semistructured interviews supplemented by narrative feedback from 15 eligible VI children and young people were used to generate draft instrument items. Seventeen VI students were consulted individually on item relevance and comprehensibility, instrument instructions, format, and administration methods. The resulting draft instrument was piloted with 101 VI children and young people comprising a nationally representative sample, drawn from 21 hospitals in the United Kingdom. Initial item reduction was informed by presence of missing data and individual item response pattern. Exploratory factor analysis (FA) and parallel analysis (PA), and Rasch analysis (RA) were applied to test the instrument's psychometric properties.

Main Outcome Measures

Psychometric indices and validity assessment of the Functional Vision Questionnaire for Children and Young People (FVQ_CYP).

Results

A total of 712 qualitative statements became a 56-item draft scale, capturing the level of difficulty in performing vision-dependent activities. After piloting, items were removed iteratively as follows: 11 for high percentage of missing data, 4 for skewness, and 1 for inadequate item infit and outfit values in RA, 3 having shown differential item functioning across age groups and 1 across gender in RA. The remaining 36 items showed item fit values within acceptable limits, good measurement precision and targeting, and ordered response categories. The reduced scale has a clear unidimensional structure, with all items having a high factor loading on the single factor in FA and PA. The summary scores correlated significantly with visual acuity.

Conclusions

We have developed a novel, psychometrically robust self-report questionnaire for children and young people—the FVQ_CYP—that captures the functional impact of visual disability from their perspective. The 36-item, 4-point unidimensional scale has potential as a complementary adjunct to objective clinical assessments in routine pediatric ophthalmology practice and in research.

Financial Disclosure(s)

The author(s) have no proprietary or commercial interest in any materials discussed in this article.

Section snippets

Methods

The study was approved by the National Health Service Research Ethics Committee for UCL Institute of Child Health and Great Ormond Street Hospital, United Kingdom, and followed the tenets of the Declaration of Helsinki.

Development of the FVQ_CYP followed 3 distinct phases. Item generation for the instrument (phase 1) was based on the rich qualitative interview data, followed by pre-testing (phase 2) and piloting of the FVQ_CYP (phase 3) with VI children. Participating children gave informed

Phase 1

The list of 712 function-relevant statements was systematically reduced to a draft 58-item questionnaire, with some specific features. First, to be contextually meaningful to children, the items were organized into 4 activity categories, that is, home, school, sports and leisure, and mobility, each introduced by the statement: “We want to find out how your eyesight affects your activities at [activity category, e.g., home].” This contrasts with other adult and child instruments organized by VF

Discussion

We have developed a novel self-report FVQ_CYP instrument for children aged 10 to 15 years to capture their self-assessed ability to complete vision-dependent tasks, which is psychometrically robust and relatively short and easy to complete. It has good construct validity, with FV summary scores correlating significantly with visual acuity. The FVQ_CYP is a unidimensional scale (i.e., capturing a single latent trait that is FV) with high measurement precision, which is targeted well to children

Acknowledgment

We would like to acknowledge all the colleagues from the following hospitals who helped with patient identification and recruitment: Birmingham Children's Hospital, Bradford Royal Infirmary, Bristol Eye Hospital, Addenbrooke's Hospital, Royal Derby Hospital, St James's University Hospital, Pinderfields General Hospital, Royal Victoria Infirmary, University Hospital of North Staffordshire, Royal Devon and Exeter Hospital, Torbay Hospital, Southend Hospital, University Hospital of Wales and West

References (29)

  • J.S. Rahi et al.

    Capturing children and young people's perspectives to identify the content for a novel vision-related quality of life instrument

    Ophthalmology

    (2011)
  • J.S. Rahi et al.

    Severe visual impairment and blindness in children in the UK

    Lancet

    (2003)
  • Department of Health

    Equity and Excellence: Liberating the NHS. Cm7881

    (2010)
  • Patient-Centered Outcomes Research Institute

    National Priorities and Research Agenda

    (2013)
  • A. Darzi

    High Quality Care for All: NHS Next Stage Review Final Report

    (2008)
  • N.J. Devlin et al.

    Getting the Most Out of PROMs

    (2010)
  • Department of Health

    Guidance on the Routine Collection of Patient Reported Outcome Measures (PROMs)

    (2009)
  • NVivo Qualitative Data Analysis Software. Version 9

    (2010)
  • C. Silver et al.

    Using Software in Qualitative Research: A Step-by-Step Guide

    (2007)
  • M. Herdman et al.

    Expert consensus in the development of a European health-related quality of life measure for children and adolescents: a Delphi study

    Acta Paediatr

    (2002)
  • M. Marella et al.

    The psychometric validity of the NEI VFQ-25 for use in a low-vision population

    Invest Ophthalmol Vis Sci

    (2010)
  • J.C. Hayton et al.

    Factor retention decisions in exploratory factor analysis: a tutorial on parallel analysis

    Organ Res Methods

    (2004)
  • G. Rasch

    Probabilistic Models for Some Intelligence and Attainment Tests. Copenhagen: Institute for Educational Research

    (1992)
  • A. Tennant et al.

    The Rasch measurement model in rheumatology: what is it and why use it? When should it be applied, and what should one look for in a Rasch paper?

    Arthritis Care Res

    (2007)
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    • A Patient-reported Outcome Measure of Functional Vision for Children and Young People Aged 8 to 18 Years With Visual Impairment

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      Individual in-depth, interviews were conducted with children younger than 10 and young people older than 15 years to investigate the relevance of issues covered by the FVQ_CYP items (from the 10-15 year olds' instrument7) to those outside the age range of 10-15 years, and to identify any new age-specific issues. We used our existing data from the development of the original FVQ_CYP, involving 32 interviews with 10-15 year olds,7 as the foundation for data collection, and reached data saturation after 12 interviews with children and 17 interviews with young people. Interviews were transcribed and coded using NVivo10.11

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    Financial Disclosure(s): The author(s) have no proprietary or commercial interest in any materials discussed in this article.

    Funding: The study was funded by a Fight for Sight Project Grant (1321/1322). Further support was received from the following sources: Guide Dogs for the Blind Association, National Institute of Health Research (NIHR) Biomedical Research Centre at Moorfields Eye Hospital NHS Foundation Trust and University College London Institute of Ophthalmology, and NIHR Central and East London Comprehensive Research Network. The study was undertaken at University College London Institute of Child Health/Great Ormond Street Hospital and Moorfields Eye Hospital/at University College London Institute of Ophthalmology, both of which receive a proportion of funding from the Department of Health's NIHR Biomedical Research Center's funding scheme. Members of the team are supported by the Ulverscroft Foundation. The Centre for Paediatric Epidemiology and Biostatistics at Institute of Child Health also benefited from funding support from the Medical Research Council in its capacity as the Medical Research Council Center of Epidemiology for Child Health.

    The FVQ_CYP is available on request from the corresponding author. Copyright statement: The FVQ_CYP should not be reproduced or modified without the corresponding author's permission. Copyright © 2013 University College London (UCL) Institute of Child Health.

    Group members available online in Appendix 1 (http://aaojournal.org).

    Appendix 1. Members of the VQoL Group: Phillippa Cumberland, Naomi Dale, Peng Khaw, Anthony Moore, Alison Salt, and David Taylor. Members of the study advisory group: Corie Brown, Marianne Craig, Christine Ennals, Sarah Keeley, Lucy Kidd, Jackie Osborne, Nidhi Sobti, Paula Thomas, and Jude Thompson.

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