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.
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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.
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