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Yolanda S. Castañeda, Christina S. Cheng-Patel, David A Leske, Suzanne M Wernimont, Sarah R Hatt, Laura Liebermann, Eileen E Birch, Jonathan M Holmes; Quality of life and functional vision concerns of children with cataracts and their parents. Invest. Ophthalmol. Vis. Sci. 2016;57(12):3086. doi: https://doi.org/.
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To identify specific health-related quality of life (HRQOL) and functional vision concerns affecting children with cataracts as expressed by children or one of their parents (proxy), and concerns affecting the parents themselves.
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, along with the frequency of specific codes within each theme.
Regarding the child’s experience 6 broad 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 (63% and 26%). For ages 5-17 years, there was good agreement between child and proxy concerns, with the exception of Worry; 12 of 16 (75%) children reported Worry but only 6% of proxies reported that their child experienced Worry (p=0.001). Children’s worries included worry that they might “damage or hurt my eye” or “hit my eye,” that “I may get blind” or “have to go into a surgery and be blind,” that “when I drive I could crash into someone because I can’t see out of this eye very well,” and that “as I get older, will my eyesight deteriorate.” Regarding the parents’ own experience, 5 broad themes were identified: Worry (100%), Compensation for Condition (100%), Treatment (94%), Emotions (90%), and Affects Family (52%).
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 pediatric cataracts.
This is an abstract that was submitted for the 2016 ARVO Annual Meeting, held in Seattle, Wash., May 1-5, 2016.
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