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.

Differences in quality-of-life dimensions of Adult Strabismus Quality of Life and Amblyopia & Strabismus Questionnaires.

PURPOSE: The Adult Strabismus Quality of Life Questionnaire (AS-20) and the Amblyopia & Strabismus Questionnaire (A&SQ) both measure health-related quality of life in strabismus patients. We evaluated to what extent these instruments cover similar domains by identifying the underlying quality-of-life factors of the combined questionnaires. METHODS: Participants were adults from a historic cohort with available orthoptic childhood data documenting strabismus and/or amblyopia. They had previously completed the A&SQ and were now asked to complete the AS-20. Factor analysis was performed on the correlation-matrix of the combined AS-20 and A&SQ data to identify common underlying factors. The identified factors were correlated with the clinical variables of angle of strabismus, degree of binocular vision, and visual acuity of the worse eye. RESULTS: One hundred ten patients completed both questionnaires (mean age, 44 years; range, 38-51 years). Six factors were found that together explained 78% of the total variance. The factor structure was dominated by the first four factors. One factor contained psychosocial and social-contact items, and another factor depth-perception items from both questionnaires. A third factor contained seven items-only from the AS-20-on eye strain, stress, and difficulties with reading and with concentrating. A fourth factor contained seven items-only from the A&SQ-on fear of losing the better eye and visual disorientation, specific for amblyopia. Current visual acuity of the worse eye correlated with depth-perception items and vision-related items, whereas current binocular vision correlated with psychosocial and social-contact items, in 93 patients. CONCLUSIONS: Factor analysis suggests that the AS-20 and A&SQ measure a similar psychosocial quality-of-life domain. However, functional problems like avoidance of reading, difficulty in concentrating, eye stress, reading problems, inability to enjoy hobbies, and need for frequent breaks when reading are represented only in the AS-20. During the development of the A&SQ, asthenopia items were considered insufficiently specific for strabismus and were excluded a priori. The patients who generated the items for the AS-20 had, in majority, adulthood-onset strabismus and diplopia and were, hence, more likely to develop such complaints than our adult patients with childhood-onset strabismus and/or amblyopia.

Amblyopia and Strabismus Questionnaire (A&SQ): clinical validation in a historic cohort.

BACKGROUND: We recently developed the Amblyopia & Strabismus Questionnaire (A&SQ) to assess the quality of life in amblyopia and/or strabismus patients, and evaluated its content and criterion validity. The A&SQ was now validated clinically by correlating its outcome with past and current orthoptic parameters in a historic cohort of amblyopia and/or strabismus patients. METHODS: The cohort was derived from all 471 patients who were treated by occlusion therapy in the Waterland Hospital in Purmerend between 1968 and 1974 and born between 1962 and 1972. All children with insufficient visual acuity from the Waterland area had been referred to a single ophthalmologist and orthoptist. Of these, 203 were traced, and 174 filled out the A&SQ. In 137 of these, binocular vision, visual acuity, and angle of strabismus were reassessed 30-35 years after occlusion therapy. These clinical parameters were correlated with the five A&SQ domains: "distance estimation", "visual disorientation", "fear of losing the better eye", "diplopia", and "social contact and cosmetic problems". RESULTS: The current acuity at distance of the amblyopic eye and reading acuity of the amblyopic eye correlated significantly with all five A&SQ domains (significance level P = 0.01-P = 0.05). Weaker correlations were found for binocularity. In spite of the expectation that stereopsis should strongly correlate with the domain "distance estimation", and angle of strabismus with the domain "social contact and cosmetic problems", the acuity of the amblyopic eye was the overall dominant parameter. CONCLUSIONS: The adult acuity of the amblyopic eye seems the most important clinical determinant for quality of life in amblyopia and/or strabismus patients, even in domains of distance estimation, visual disorientation, and social contact and cosmetic problems, although intermediate determinants cannot be excluded.