Developing an instrument to assess vision-related and subjective quality of life in children with intellectual disability: Data collection and preliminary analysis in a Chinese population

Ophthalmic and Physiological Optics

Volumn 28, Issue 3, 2008, Pages 238-246

  Cui, Yu ^a   Stapleton, Fiona ^a   Suttle, Catherine ^a  

^a UNIVERSITY OF NEW SOUTH WALES   (Australia)

Author keywords

Adolescents; Children; Intellectual disability; Questionnaire; Vision related quality of life

Indexed keywords

ARTICLE; CHILD; CHINA; CONTROLLED STUDY; DISEASE ASSOCIATION; HUMAN; INTELLECTUAL IMPAIRMENT; MAJOR CLINICAL STUDY; POPULATION RESEARCH; PRIORITY JOURNAL; QUALITY OF LIFE; QUESTIONNAIRE; VISION TEST; VISUAL ACUITY; VISUAL DISORDER;

ADOLESCENT; CHILD; FEMALE; HEALTH STATUS INDICATORS; HUMANS; INTELLIGENCE TESTS; MALE; MENTAL RETARDATION; PSYCHOMETRICS; QUALITY OF LIFE; QUESTIONNAIRES; VISION DISORDERS; VISION SCREENING; VISUAL ACUITY;

EID: 42449149422     PISSN: 02755408     EISSN: 14751313     Source Type: Journal    
DOI: 10.1111/j.1475-1313.2008.00564.x     Document Type: Article

References (32)

1. Adler, P., Cregg, M., Duignan, A., Ilett, G. Woodhouse, J. M. (2005) Effect of training on attitudes and expertise of optometrists towards people with intellectual disabilities. Ophthalmic Physiol. Opt. 25, 105 118.
2. Bader, D. (1974) The visual appraisal of the mentally retarded. S. Afr. Med. J. 48, 2077 2080.
3. Boulton, M., Haines, L., Smyth, D. Fielder, A. (2006) Health-related quality of life of children with vision impairment or blindness. Dev. Med. Child Neurol. 48, 656 661.
4. Bromham, N. R., Woodhouse, J. M., Cregg, M., Webb, E. Fraser, W. I. (2002) Heart defects and ocular anomalies in children with Down's syndrome. Br. J. Ophthalmol. 86, 1367 1368.
5. Chow, S. M., Lo, S. K. Cummins, R. A. (2005) Self-perceived quality of life of children and adolescents with physical disabilities in Hong Kong. Qual. Life Res. 14, 415 423.
6. Connolly, M. A. Johnson, J. A. (1999) Measuring quality of life in paediatric patients. Pharmacoeconomics 16, 605 625.
7. Cregg, M., Woodhouse, J. M., Pakeman, V. H., Saunders, K. J., Gunter, H. L., Parker, M., Fraser, W. I. Sastry, P. (2001) Accommodation and refractive error in children with Down syndrome: cross-sectional and longitudinal studies. Invest. Ophthalmol. Vis. Sci. 42, 55 63.
8. Cregg, M., Woodhouse, J. M., Stewart, R. E., Pakeman, V. H., Bromham, N. R., Gunter, H. L., Trojanowska, L., Parker, M. Fraser, W. I. (2003) Development of refractive error and strabismus in children with Down syndrome. Invest. Ophthalmol. Vis. Sci. 44, 1023 1030.
9. Cremeens, J., Eiser, C. Blades, M. (2006a) Characteristics of health-related self-report measures for children aged three to eight years: a review of the literature. Qual. Life Res. 15, 739 754.
10. Cremeens, J., Eiser, C. Blades, M. (2006b) Factors influencing agreement between child self-report and parent proxy-reports on the Pediatric Quality of Life Inventory 4.0 (PedsQL) generic core scales. Health Qual. Life Outcomes 4, 58.
11. Cummins, R. (1997) Self-rated quality of life scales for people with an intellectual disability: a review. J. Appl. Res. Int. Dis. 10, 199 216.
12. Cummins, R. (2001) Self-rated quality of life scales for people with an intellectual disability: a reply to Ager & Hatton. J. Appl. Res. Int. Dis. 14, 1 11.
13. Donohue, P. K. (2002) Health-related quality of life of preterm children and their caregivers. Ment. Retard. Dev. Disabil. Res. Rev., 8, 293 297.
14. Eiser, C. Morse, R. (2001) Can parents rate their child's health-related quality of life? Results of a systematic review Qual. Life Res. 10, 347 357.
15. Eiser, C., Mohay, H. Morse, R. (2000) The measurement of quality of life in young children. Child Care Health Dev. 26, 401 414.
16. Felius, J., Stager, D. R. Sr., Berry, P. M., Fawcett, S. L., Stager, D. R. Jr., Salomao, S. R., Berezovsky, A. Birch, E. E. (2004) Development of an instrument to assess vision-related quality of life in young children. Am. J. Ophthalmol. 138, 362 372.
17. Gothwal, V. K., Lovie-Kitchin, J. E. Nutheti, R. (2003) The development of the LV Prasad-Functional Vision Questionnaire: a measure of functional vision performance of visually impaired children. Invest. Ophthalmol. Vis. Sci. 44, 4131 4139.
18. Gupta, S. K., Viswanath, K., Thulasiraj, R. D., Murthy, G. V., Lamping, D. L., Smith, S. C., Donoghue, M. Fletcher, A. E. (2005) The development of the Indian vision function questionnaire: field testing and psychometric evaluation. Br. J. Ophthalmol. 89, 621 627.
19. Hair, J., Black, W., Babin, B., Anderson, R. Tatham, R. (2006) Multivariate Data Anaysis, Pearson Education, Upper Saddle River, New Jersey.
20. Hatton, C. A. A. (2002) Quality of life measurement and people with intellectual disabilities: a reply to Cummins. J. Appl. Res. Int. Dis. 15, 254.
21. Hensel, E., Rose, J., Kroese, B. S. Banks-Smith, J. (2002) Subjective judgements of quality of life: a comparison study between people with intellectual disability and those without disability. J. Intellect. Disabil. Res. 46, 95 107.
22. Lyons, G. (2005) The Life Satisfaction Matrix: an instrument and procedure for assessing the subjective quality of life of individuals with profound multiple disabilities. J. Intellect. Disabil. Res. 49, 766 769.
23. Maino, D. (1995) Diagnosis and Management of Special Populations. Mosby, St Louis.
24. Manificat, S., Dazord, A., Cochat, P. Nicolas, J. (1997) [Evaluation of the quality of life in pediatrics: how to collect the point of view of children]. Arch. Pediatr. 4, 1238 1246.
25. Manificat, S., Dazord, A., Cochat, P., Morin, D., Plainguet, F. Debray, D. (2003) Quality of life of children and adolescents after kidney or liver transplantation: child, parents and caregiver's point of view. Pediatr. Transplant. 7, 228 235.
26. O'Connor, R. (2004) Measuring Quality of Life in Health. Churchill Livingstone, Sydney.
27. Quinn, G. E., Dobson, V., Saigal, S., Phelps, D. L., Hardy, R. J., Tung, B., Summers, C. G. Palmer, E. A. (2004) Health-related quality of life at age 10 years in very low-birth-weight children with and without threshold retinopathy of prematurity. Arch. Ophthalmol. 122, 1659 1666.
28. Rahi, J. S. Cable, N. (2003) Severe visual impairment and blindness in children in the UK. Lancet 362, 1359 1365.
29. Saigal, S., Rosenbaum, P. L., Feeny, D., Burrows, E., Furlong, W., Stoskopf, B. L. Hoult, L. (2000) Parental perspectives of the health status and health-related quality of life of teen-aged children who were extremely low birth weight and term controls. Pediatrics 105, 569 574.
30. Stevenson, M. R., Hart, P. M., Chakravarthy, U., Mackenzie, G., Bird, A. C., Owens, S. L., Chisholm, I. H., Hall, V., Houston, R. F., Mcculloch, D. W. Plowman, N. (2005) Visual functioning and quality of life in the SubFoveal Radiotherapy Study (SFRADS): SFRADS report 2. Br. J. Ophthalmol. 89, 1045 1051.
31. Stewart, R. E., Woodhouse, J. M., Cregg, M. Pakeman, V. H. (2007) Association between accommodative accuracy, hypermetropia, and strabismus in children with Down's syndrome. Optom. Vis. Sci. 84, 149 155.
32. Woodhouse, J. M., Pakeman, V. H., Cregg, M., Saunders, K. J., Parker, M., Fraser, W. I., Sastry, P. Lobo, S. (1997) Refractive errors in young children with Down syndrome. Optom. Vis. Sci. 74, 844 851.