Development of Pediatric Eye Questionnaires for Children With Eye Conditions

Abstract

Purpose: To develop patient-derived Pediatric Eye Questionnaires (PedEyeQ) to separately assess eye-related quality of life (ER-QOL) and functional vision in children with eye conditions. Design: Questionnaire development study. Methods: 444 children (0 to <18 years old), across 10 diagnostic categories, were enrolled at two sites, All parents (n=444) and 277 children (5 to <18 years old) completed master questionnaires, developed from patient-derived concerns. Factor analysis was performed to identify unidimensional domains (Eigenvalue >1.0) and Rasch analyses (differential item functioning, targeting, fit) to reduce items (separate analyses for 0-4, 5-11 and 12-17 year olds and for each factor). Results: The Child 5-11 year-old PedEyeQ consisted of four unidimensional domains/ questionnaires: functional vision, bothered by eyes/vision, social, frustration/worry (10 items each). The Child 12-17 year-old PedEyeQ consisted of the same four domains (total 39 items). The Proxy 0-4 year PedEyeQ consisted of three questionnaires/domains: functional vision, bothered by eyes/vision, social (total 29 items). The Proxy 5-11 year-old consisted of five questionnaires/domains: functional vision, bothered by eyes/vision, social, frustration/worry, eyecare (total 39 items) as did the Proxy 12-17 year-old PedEyeQ (total 42 items). The Parent PedEyeQ, consisted of four questionnaires/domains: impact on parent/family, worry re child's eye condition, worry re child's self-perception and interactions, worry re child's visual function (total 35 items). Rasch look-up tables were created for scoring. Conclusions and Relevance: By following a rigorous approach we have developed Pediatric Eye Questionnaires for separately assessing functional vision and ER-QOL domains in children of any age and with any eye condition.

Collecting child-patient feedback: A systematic review on the patient-reported outcome measures for hospitalized children

“…[29][30][31][32][33][34][35][36][37] Seven (41.18%) of the included studies used their developed tools. 17,[38][39][40][41][42][43] The remaining studies (5.8%) did not mention whether the authors used their developed tools or not. 44 Of the 17 studies, only 10 (58.82%) explicitly stated using reliability and validity testing.…”

“…Research suggests that surveys employing lower reading levels (fifth to sixthgrade) is more appropriate for children 30 However, thirteen (76.48%) of the articles failed to consider the reading level during the child tool validation, which may also limit the wide acceptance of the studies. Additionally, policies regarding measures to reduce missing data were mentioned in only four (23.52%) of the included studies 30,35,38,40 Interviews were conducted in only six (35.29%) of the included studies, and among them, five (83.33%) of the studies used the appropriate methods and techniques to transcribe the interview. 17,36,[40][41]48 Further, among the included studies, eleven (64.71%) utilized pilot testing to increase the clarity and validity of the instrument items and content validity of interview questions.…”

An Age- and Stage-Appropriate Patient-Reported Outcome Measure of Vision-Related Quality of Life of Children and Young People with Visual Impairment

“…7 Hitherto, most PROMs for children and young people with ophthalmic conditions, including those designed to assess VQoL, comprise either a single instrument used across a very wide age-range 8,9 or age-specific versions without age-appropriate items or response formats. 10 Thus, they do not take account of the development of children's understanding of illness, health and quality of life (QoL) and how this changes as they mature, 11 and cannot capture developmental differences or age-specific needs in terms of content, response options and ability to complete independently. Our decision to set the minimum age threshold at 8 years reflects the age from which self-report becomes reliable and our maximum age threshold the age of transition into adult services.…”

Harmonization of Outcomes and Vision Endpoints in Vision Restoration Trials: Recommendations from the International HOVER Taskforce

“…The Pediatric Eye Questionnaire (PedEyeQ) is a recently developed set of questionnaires for children of different age groups (0-4, 5-11, and 12-17 years) that come in self-reported, proxy, and parent versions. 146 For the youngest age group, there is no self-reported version, and only one parent version exists; the proxy instrument therefore comes in three versions, and the self-reported instrument comes in two versions. Each instrument consists of up to 10 questions in three to five domains (functional vision, being bothered by vision loss, social impact, frustration/worry, and eye care), with concerns about these areas forming the domains in the parent questionnaire.…”