Quality of life and functional vision concerns of children with cataracts and their parents

Purpose To identify specific health-related quality of life (HRQOL) and functional vision concerns affecting children with cataracts and common associated conditions as expressed by children or one of their parents (proxy), and HRQOL concerns affecting the parents themselves. Methods Individual semi-structured interviews were conducted with parents of children with cataracts (N = 31) and with the children themselves (ages 5-17 years; N = 16). Transcripts of recorded interviews were evaluated using NVivo software. Specific concerns were identified and coded, and broad themes were identified. The frequency of each theme was calculated, with the frequency of specific concerns within each theme. Results Regarding the child's experience, 6 themes were identified: Visual Function (mentioned by 16 of 16 children (100%) and by 26 of 31 parents (84%), Social (94 and 65%), Treatment (81 and 90%), Worry (75 and 10%), Emotions (63 and 68%), and Physical Discomfort (63 and 26%). Worry showed the largest discrepancy between child and their parent; although 75% children reported Worry, only 6% of parents reported that their child experienced Worry (P = 0.0009). Regarding the parents' own experience, 5 themes were identified: Worry (100%), Compensation for Condition (100%), Treatment (94%), Emotions (90%), and Affects Family (52%). Conclusions A wide range of concerns were identified from interviews of children with cataracts and their parents. Concerns reflect the impact of cataracts in physical, emotional, and social domains, and specific concerns will be used for the development of questionnaires to quantify the quality of life and functional vision effects of cataracts.