Journal of American Association for Pediatric Ophthalmology and Strabismus
Major ArticleFunctional vision and quality of life in children with microphthalmia/anophthalmia/coloboma—a cross-sectional study
Section snippets
Subjects and Methods
This study was approved by the National Research Ethics Committee South Central–Oxford A (14/SC/1052) and adhered to the tenets of the Declaration of Helsinki. Between June 25, 2014, and June 3, 2015, children 2-16 years of age attending Moorfields Eye Hospital were prospectively enrolled. Exclusion criteria were inability to communicate in English and surgical intervention within 1 month (before or after) of completing questionnaires. We screened the medical records of all children attending
Results
We approached 62 families of children with MAC who met the inclusion criteria. Sixteen declined to take part because of perceived lack of time. We enrolled 46 children and removed one dataset, because the child did not have MAC, resulting in the analysis of 45 datasets.
The proportion of missing data was low. No data were missing for age, sex, diagnoses, laterality, and best-corrected visual acuity. Ethnicity was unknown in 13.3%. Questionnaire response rates were high (eTable 1).
The median IQR
Discussion
This is the first report of FVA, VR-QoL, and HR-QoL in children with MAC. Previous studies reported increased anxiety and feelings of shame, shyness, sadness, and fear in adults with MAC, but these studies included also nondevelopmental MAC, such as post-traumatic or post-infectious forms of anophthalmia.6, 7 The reduction in HR-QoL in children with MAC we report here is similar to levels reported by children with acute lymphoblastic leukemia and chronic diseases.14, 15 In addition, VR-QoL is
Acknowledgments
The authors thank Miss Anneka Tailor for supporting data collection and entry and Miss Konstantina Prapa for facilitating enrollment of study participants. The Quality of Life study described in this paper was carried out using the PedsQL, which was developed by Dr. James W. Varni.
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AHDN and VT are employed by the National Institute for Health Research Biomedical Research Centre at Moorfields Eye Hospital and UCL Institute of Ophthalmology, and as such the work was supported by the NIHR. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR, or the Department of Health.