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Functional vision and quality of life in children with microphthalmia/anophthalmia/coloboma—a cross-sectional study

Dahlmann-Noor, A; Tailor, V; Abou-Rayyah, Y; Adams, G; Brookes, J; Khaw, PT; Bunce, C; ... Dave, S; + view all (2018) Functional vision and quality of life in children with microphthalmia/anophthalmia/coloboma—a cross-sectional study. Journal of American Association for Pediatric Ophthalmology and Strabismus , 22 (4) 281-285.e1. 10.1016/j.jaapos.2018.01.015. Green open access

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Abstract

Purpose: To determine the child's and parental perception of functional visual ability (FVA), vision-related and health-related quality of life (VR-QoL, HR-QoL) in children with microphthalmia/anophthalmia/coloboma (MAC). / Methods: Between June 25, 2014, and June 3, 2015, we carried out a cross-sectional observational study at Moorfields Eye Hospital, London, UK, enrolling 45 children 2-16 years of age with MAC attending our clinics, and their parents. To assess FVA, VR-QoL, and HR-QoL we asked participants to complete three validated tools, the Cardiff Visual Ability Questionnaire for Children (CVAQC), the Impact of Vision Impairment for Children (IVI-C) instrument, and the PedsQL V 4.0. The main outcome measures were the FVA, VR-QoL, and HR-QoL scores, reported by children and parents. / Results: In children with MAC, FVA is moderately reduced, with a median CVAQC score of −1.4 (IQR, −2.4 to 0.4; range, −3.0 [higher FVA] to +2.8 [lower FVA]). VR-QoL and HR-QoL are greatly reduced, with an IVI-C median score of 63 (IQR, 52-66; normal VR-QoL, 96), a median self-reported PedsQL score of 77 (IQR, 71-90; normal HR-QoL, 100) and parental score of 79 (IQR, 61-93), and a family impact score of 81 (67-93). Psychosocial well-being scores are lower than physical well-being scores. Parents and children have a different perception of the impact of the condition on the child's HR-QoL. / Conclusions: MAC has a significant impact on a child's FVA and QoL, similar to that described by children with acute lymphoblastic leukaemia and chronic systemic conditions. Children and families may benefit from psychosocial support.

Type: Article
Title: Functional vision and quality of life in children with microphthalmia/anophthalmia/coloboma—a cross-sectional study
Open access status: An open access version is available from UCL Discovery
DOI: 10.1016/j.jaapos.2018.01.015
Publisher version: https://doi.org/10.1016/j.jaapos.2018.01.015
Language: English
Additional information: This version is the author accepted manuscript. For information on re-use, please refer to the publisher’s terms and conditions.
UCL classification: UCL
UCL > Provost and Vice Provost Offices
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Div of Psychology and Lang Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Div of Psychology and Lang Sciences > Experimental Psychology
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Institute of Ophthalmology
URI: https://discovery.ucl.ac.uk/id/eprint/10047393
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