Laura Liebermann1, David A Leske1, Yolanda S Castañeda2, Sarah R Hatt1, Suzanne M Wernimont1, Christina S Cheng2, Eileen E Birch3, Jonathan M Holmes4. 1. Department of Ophthalmology, Mayo Clinic, Rochester, Minnesota. 2. Retina Foundation of the Southwest, Dallas, Texas. 3. Retina Foundation of the Southwest, Dallas, Texas; Department of Ophthalmology, University of Texas Southwestern Medical Center, Dallas, Texas. 4. Department of Ophthalmology, Mayo Clinic, Rochester, Minnesota. Electronic address: holmes.jonathan@mayo.edu.
Abstract
PURPOSE: To identify specific health-related quality of life (HRQOL) concerns affecting children with esotropia as expressed by children or one of their parents (proxy) and concerns affecting the parents themselves. METHODS: Sixty children with esotropia (0-17 years of age) and 1 parent for each child were prospectively enrolled. Individual semistructured interviews were conducted with children aged 5-17 years (n = 40) and 1 parent each for child ages 0-17 years. Transcripts of recorded interviews were evaluated using NVivo software. Specific concerns were identified from both child and parent interviews and coded. From these specific codes, broad themes were identified. Frequency of each theme was calculated, along with the frequency of specific codes within each theme. RESULTS: Regarding the child's experience 6 broad themes were identified: visual function (mentioned by 32 of 40 children (80%) and by 50 of 60 parents (proxy assessment of child, 83%), treatment (78% and 85%), emotions (65% and 67%), social (58% and 68%), physical (58% and 32%), and worry (45% and 7%). Regarding the parents' own experience, 5 broad themes were identified: treatment (59 of 60 parents, 98%), worry (97%), emotions (82%), compensation for condition (80%), and affects family (23%). CONCLUSIONS: A wide range of concerns were identified from interviews of children with esotropia and their parents. Concerns reflect the impact of esotropia in physical, emotional, and social domains, and specific concerns will be used for the development of questionnaires to quantify the effects of esotropia on children's and parents' quality of life.
PURPOSE: To identify specific health-related quality of life (HRQOL) concerns affecting children with esotropia as expressed by children or one of their parents (proxy) and concerns affecting the parents themselves. METHODS: Sixty children with esotropia (0-17 years of age) and 1 parent for each child were prospectively enrolled. Individual semistructured interviews were conducted with children aged 5-17 years (n = 40) and 1 parent each for child ages 0-17 years. Transcripts of recorded interviews were evaluated using NVivo software. Specific concerns were identified from both child and parent interviews and coded. From these specific codes, broad themes were identified. Frequency of each theme was calculated, along with the frequency of specific codes within each theme. RESULTS: Regarding the child's experience 6 broad themes were identified: visual function (mentioned by 32 of 40 children (80%) and by 50 of 60 parents (proxy assessment of child, 83%), treatment (78% and 85%), emotions (65% and 67%), social (58% and 68%), physical (58% and 32%), and worry (45% and 7%). Regarding the parents' own experience, 5 broad themes were identified: treatment (59 of 60 parents, 98%), worry (97%), emotions (82%), compensation for condition (80%), and affects family (23%). CONCLUSIONS: A wide range of concerns were identified from interviews of children with esotropia and their parents. Concerns reflect the impact of esotropia in physical, emotional, and social domains, and specific concerns will be used for the development of questionnaires to quantify the effects of esotropia on children's and parents' quality of life.
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Authors: Laura Liebermann; David A Leske; Sarah R Hatt; Yolanda S Castañeda; Suzanne M Wernimont; Christina S Cheng-Patel; Eileen E Birch; Jonathan M Holmes Journal: J AAPOS Date: 2017-05-17 Impact factor: 1.220
Authors: Sarah R Hatt; David A Leske; Yolanda S Castañeda; Suzanne M Wernimont; Laura Liebermann; Christina S Cheng-Patel; Eileen E Birch; Jonathan M Holmes Journal: Am J Ophthalmol Date: 2019-01-14 Impact factor: 5.258
Authors: Sarah R Hatt; David A Leske; Yolanda S Castañeda; Suzanne M Wernimont; Laura Liebermann; Christina S Cheng-Patel; Eileen E Birch; Jonathan M Holmes Journal: J AAPOS Date: 2018-09-21 Impact factor: 1.220
Authors: Sarah R Hatt; David A Leske; Yolanda S Castañeda; Suzanne M Wernimont; Laura Liebermann; Christina S Cheng-Patel; Eileen E Birch; Jonathan M Holmes Journal: JAMA Ophthalmol Date: 2020-05-01 Impact factor: 7.389