title: Quality of life and functional vision concerns of children with cataracts and their parents.
abstract: PurposeTo 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.MethodsIndividual 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.ResultsRegarding 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%).ConclusionsA 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.
authors.affiliation: Crystal Charity Ball Pediatric Vision Laboratory, Retina Foundation of the Southwest, Dallas, TX, USA.
authors.forename: Y S
authors.initials: YS
authors.lastname: Castañeda
authors.affiliation: Crystal Charity Ball Pediatric Vision Laboratory, Retina Foundation of the Southwest, Dallas, TX, USA.
authors.forename: C S
authors.initials: CS
authors.lastname: Cheng-Patel
authors.affiliation: Department of Ophthalmology, Mayo Clinic, Rochester, MN, USA.
authors.forename: D A
authors.initials: DA
authors.lastname: Leske
authors.affiliation: Department of Ophthalmology, Mayo Clinic, Rochester, MN, USA.
authors.forename: S M
authors.initials: SM
authors.lastname: Wernimont
authors.affiliation: Department of Ophthalmology, Mayo Clinic, Rochester, MN, USA.
authors.forename: S R
authors.initials: SR
authors.lastname: Hatt
authors.affiliation: Department of Ophthalmology, Mayo Clinic, Rochester, MN, USA.
authors.forename: L
authors.initials: L
authors.lastname: Liebermann
authors.affiliation: Crystal Charity Ball Pediatric Vision Laboratory, Retina Foundation of the Southwest, Dallas, TX, USA.|Department of Ophthalmology, UT Southwestern Medical Center, Dallas, TX, USA.
authors.forename: E E
authors.initials: EE
authors.lastname: Birch
authors.affiliation: Department of Ophthalmology, Mayo Clinic, Rochester, MN, USA.
authors.forename: J M
authors.initials: JM
authors.lastname: Holmes
mesh_terms: D000293:Adolescent; D000328:Adult; D002386:Cataract / Q000503:physiopathology / Q000523:psychology*; D002387:Cataract Extraction; D002648:Child; D002675:Child, Preschool; D019988:Children with Disabilities / Q000523:psychology*; D005260:Female; D006304:Health Status; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D019654:Lens Implantation, Intraocular; D008297:Male; D008875:Middle Aged; D010290:Parents / Q000523:psychology*; D011788:Quality of Life / Q000523:psychology*; D011795:Surveys and Questionnaires; D014785:Vision, Ocular / Q000502:physiology*; D014792:Visual Acuity / Q000502:physiology; D019987:Persons with Visual Disabilities / Q000523:psychology; D055815:Young Adult