June 2017
Volume 58, Issue 8
Open Access
ARVO Annual Meeting Abstract  |   June 2017
Refinement of a new patient-reported outcome measure for pediatric eye conditions
Author Affiliations & Notes
  • Suzanne M Wernimont
    Ophthalmology, Mayo Clinic, Rochester, Minnesota, United States
  • Yolanda S. Castaneda
    Retina Foundation of the Southwest, Dallas, Texas, United States
  • David A Leske
    Ophthalmology, Mayo Clinic, Rochester, Minnesota, United States
  • Sarah R Hatt
    Ophthalmology, Mayo Clinic, Rochester, Minnesota, United States
  • Laura Liebermann
    Ophthalmology, Mayo Clinic, Rochester, Minnesota, United States
  • Christina S Cheng-Patel
    Retina Foundation of the Southwest, Dallas, Texas, United States
  • Eileen E Birch
    Retina Foundation of the Southwest, Dallas, Texas, United States
    UT Southwestern Medical Center, Dallas, Texas, United States
  • Jonathan M Holmes
    Ophthalmology, Mayo Clinic, Rochester, Minnesota, United States
  • Footnotes
    Commercial Relationships   Suzanne Wernimont, None; Yolanda Castaneda, None; David Leske, None; Sarah Hatt, None; Laura Liebermann, None; Christina Cheng-Patel, None; Eileen Birch, None; Jonathan Holmes, None
  • Footnotes
    Support  NIH Grants EY024333 (JMH, PI & EEB, Co-I) and EY022313 (EEB), Research to Prevent Blindness, and the Mayo Foundation.
Investigative Ophthalmology & Visual Science June 2017, Vol.58, 1348. doi:
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      Suzanne M Wernimont, Yolanda S. Castaneda, David A Leske, Sarah R Hatt, Laura Liebermann, Christina S Cheng-Patel, Eileen E Birch, Jonathan M Holmes; Refinement of a new patient-reported outcome measure for pediatric eye conditions. Invest. Ophthalmol. Vis. Sci. 2017;58(8):1348.

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

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Abstract

Purpose : To determine the factor structure of a newly-developed patient-reported outcome measure (PROM) specifically designed to assess health-related quality of life (HRQOL) concerns and functional vision concerns affecting children and their parents.

Methods : In a previous phase, we interviewed 204 children and 328 parents across 10 diagnostic categories (esotropia, exotropia, hypertropia, amblyopia, refractive error, anterior segment, CNS, nystagmus, orbital, retina/optic nerve) to identify specific concerns. Interview transcripts were coded, yielding 6824 concerns and 589 individual questions. After binning and winnowing, master questionnaires were created with 97 items for the child (and proxy) and 69 items for the parent. In the current phase, the master questionnaires were administered to 147 children and 254 parents across the 10 diagnostic categories. Factor analysis was performed on the non-treatment related items (63 child items and 47 parent items) and, separately, on each group of treatment- related items, setting a threshold Eigenvalue of 1.0. Items under each factor were then reviewed for a common theme.

Results : The child questionnaire yielded 10 factors (Eigenvalues 19.8 to 1.1), with domains including school, daily activities, social, worry, feeling different, emotions, appearance and compensating. The treatment questions (grouped as glasses, patching, contact lens, and drops), each had one or two factors. The parent questionnaire yielded 5 factors (Eigenvalues 16.4 to 1.1) with domains including worry, family impact, social, limitations and appearance.

Conclusions : By following a rigorous patient-parent-derived approach to question development and refinement, we have created master questionnaires for children and their parents that have meaningful factor structures. These questionnaires will be further refined by Rasch analysis as part of our ongoing development of a patient-reported outcome measure for children with eye conditions, assessing HRQOL and functional vision.

This is an abstract that was submitted for the 2017 ARVO Annual Meeting, held in Baltimore, MD, May 7-11, 2017.

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