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The quality of life of children with congenital cataract: findings of the British Congenital Cataract Study.
  1. Melanie H Chak (m.chak{at}ich.ucl.ac.uk),
  2. Jugnoo Sangeeta Rahi (j.rahi{at}ich.ucl.ac.uk),
  3. British Congenital Cataract Interest Group BCCIG
  1. Institute of Child Health, United Kingdom
  2. Institute of Child Health and Institute of Ophthalmology, United Kingdom
  3. Institute of Child health, United Kingdom

    Abstract

    Aims: There is increasing emphasis on patient- based assessment of health care outcomes but evaluation of the impact of ophthalmic disorders on quality life is undertaken infrequently. We report the health-related quality of life (HRQOL) of children with congenital cataract.

    Methods: At least 6 years after diagnosis, 41 children (representative of a national cohort) and their parents completed independently the child and proxy (parental) versions of PedsQL™ 4.0, a generic multidimensional paediatric HRQOL instrument. This provided a physical health summary score, a psychosocial health summary score and an overall score (range 0 to 100; higher scores indicating better HRQOL).

    Results: Questionnaires were completed by 33 parent-child pairs and by 8 parents alone. The mean (SD) total score self-reported by children was 75.85(15.56) and 75.91(16.79) reported by parents. The mean (SD) physical health score self-reported by children (80.76, 8.61) was higher than the psychosocial health score (72.93, 16.06). There was considerable variation in agreement of scores reported by individual child-parent pairs (largest difference 56.3 points). Notably, the PedsQL scores of children with congenital cataract were comparable to those reported for some children with severe systemic diseases such as rheumatological disease and some cancers.

    Conclusions: These findings serve to characterise the significant broader impact of congenital cataract on patients and their families. The PedsQL 4.0 proved an acceptable instrument for assessing generic HRQOL, permitting valuable reporting by children as well as their parents. However to capture fully the subjective experience of ophthalmic disease in childhood, specific vision-related quality of life measures for children are needed.

    • children
    • congenital cataract
    • health related quality of life
    • vision related quality of life

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