Quality of life during occlusion therapy for amblyopia from the perspective of the children and from that of their parents, as proxy

BACKGROUND: Parents pity their amblyopic child when they think that they suffer from occlusion therapy. We measured health-related quality of life during occlusion therapy. METHODS: We developed the Amblyopia Parents and Children Occlusion Questionnaire (APCOQ). It was designed by a focus group of patients, orthoptists and ophthalmologists and consisted of twelve items concerning skin contact of patch, activities, contact with other children, emotions and awareness of necessity to patch. Parents filled out the Proxy Version shortly before the Child Version was obtained from their child. Child Version item scores were compared with Proxy Version item scores and related to the child’s age, visual acuity, refraction, angle of strabismus, and cause of amblyopia. RESULTS: 63 children were recruited by orthoptists, and their parents agreed to participate. Three children were excluded: one child with Down-syndrome, one child with cerebral palsy, and one child who had been treated by occlusion therapy. Included were 60 children (mean age 4.57 ± 1.34 SD) and 56 parents. Children had occluded 128 ± 45 SD days at interview. Prior to occlusion, 54 children had worn glasses. Cronbach’s α was 0.74 for the Child Version and 0.76 for the Proxy Version. Children judged their quality of life better than their parents did, especially pertaining to skin contact and activities like games and watching TV. Notably, 13 children with initial visual acuity ≥ 0.6 logMAR in the amblyopic eye experienced little trouble with games during occlusion. Quality of life in eight children with strabismus of five years and older correlated negatively (Spearman rank mean rho = -0.43) with angle of strabismus. Children with amblyopia due to both refractive error and strabismus (n = 14) had, relatively, lowest quality of life, also according to their parents, as proxy. Several children did not know why they wore a patch, contrary to what their parents thought. CONCLUSIONS: Children’s quality of life during occlusion therapy is affected less than their parents think, especially regarding skin contact, playing games and watching TV during occlusion. Quality of life correlates negatively with the angle of strabismus in children five years and older. Children do not know why they wear a patch, contrary to what their parents think. Notably, children with low visual acuity in the amblyopic eye, had little difficulty playing games.