July 16, 2019
"Patient-reported outcome measures are increasingly recognized as important for assessing an individual's health and well-being," says Jonathan M. Holmes, M.D., with Ophthalmology at Mayo Clinic in Rochester, Minnesota. "In pediatric eye care, there are several vision-related survey instruments designed for specific eye conditions, but none that can be used across the spectrum of eye disease."
Since 2014, Dr. Holmes' research team at Mayo Clinic, in collaboration with Eileen E. Birch, Ph.D., and her team at Retina Foundation of the Southwest, Dallas, has been working to develop patient-reported outcome measures that reflect concerns about eye-related quality of life and functional vision. Initial results were published in Journal of AAPOS in 2016, 2017 and 2018. The complete Pediatric Eye Questionnaire (PedEyeQ) was published in American Journal of Ophthalmology in January 2019.
Stage 1: Research identifies concerns
Researchers initially enrolled 328 children. They interviewed children age 5 years and older (180 children) and all 328 parents to identify specific concerns. These children represented the range of eye conditions across 10 diagnostic categories: amblyopia, anterior segment, central nervous system-related vision loss, esotropia, exotropia, hypertropia, nystagmus, orbital condition, refractive error, and retina and optic nerve. The aim was to recruit 10 patients in each of three age groups (0 to 4 years, 5 to 11 years, 12 to 17 years), including racial or ethnic minorities.
The researchers reviewed transcribed interviews and coded specific eye-related quality-of-life and functional vision concerns, which they then reviewed to formulate questions to address specific child and parent concerns. The result was 614 individual child questions and 589 parent questions.
Stage 2: Developing the PedEyeQ
Stage 2 focused on development of a master questionnaire. Researchers aimed to identify no more than 100 questions for further refinement. The original questions were eliminated if they were similar to another question, confusing or unclear, or if the content was too narrow or had limited applicability across socioeconomic and cultural groups.
In 2017-2018, researchers enrolled a new cohort of 444 children (0 to 17 years old) across the 10 diagnostic categories to evaluate the master questionnaire. All parents and 277 children ages 5 to 17 years completed this master questionnaire. The final PedEyeQ was developed from analyses of responses on the master questionnaire; factor analysis defined specific unidimensional domains, and Rasch analysis established performance, calibration and scoring.
The researchers formatted questions to create three different questionnaires:
- Child (for completion by the child)
- Proxy (paralleling the child questionnaire but from the parent's perspective)
- Parent (the parent's own experience)
Child 5- to 11-year-old PedEyeQ included 40 total questions over four domains (functional vision, bothered by eyes or vision, social, and frustration or worry).
Child 12- to 17-year-old PedEyeQ included 39 total questions over four domains (functional vision, bothered by eyes or vision, social, and frustration or worry).
Proxy 0- to 4-year-old PedEyeQ included 29 total questions over three domains (functional vision, bothered by eyes or vision, and social).
Proxy 5- to 11-year-old PedEyeQ included 39 total questions over five domains (functional vision, bothered by eyes or vision, social, frustration or worry, and eye care).
Proxy 12- to 17-year-old PedEyeQ included 42 total questions over five domains (functional vision, bothered by eyes or vision, social, frustration or worry, and eye care).
Parent PedEyeQ included 35 total questions over four domains (impact on parent or family, worry regarding child's eye condition, worry regarding child's self-perception and interactions, and worry regarding child's visual function).
"By following a rigorous process, we have generated comprehensive questionnaires that can be used to assess the two broad areas of eye-related quality of life and functional vision in children of any age with any eye condition," says Dr. Holmes. "Our subsequent third stage of this research will evaluate construct validity, reliability and responsiveness of the derived questionnaires in a new patient population.
"In March 2019, we reported at the American Association for Pediatric Ophthalmology and Strabismus annual meeting that children with bilateral visual impairment have markedly reduced functional vision and eye-related quality-of-life scores, which was the first step in validating this new PedEyeQ instrument."
For more information
The new questionnaires are freely available on the Pediatric Eye Disease Investigator Group website.
Liebermann L, et al. Childhood esotropia: Child and parent concerns. Journal of AAPOS. 2016;20:295.
Liebermann L, et al. Bilateral childhood visual impairment: Child and parent concerns. Journal of AAPOS. 2017;21:183.
Hatt SR, et al. Patient-derived questionnaire items for patient-reported outcome measures in pediatric eye conditions. Journal of AAPOS. 2018;22:445.
Hatt SR, et al. Development of pediatric eye questionnaires for children with eye conditions. American Journal of Ophthalmology. 2019;200:201.