Quality of life and congenital heart defects: Comparing parent and professional values

Archives of Disease in Childhood

Volumn 92, Issue 5, 2007, Pages 388-393

  Knowles, Rachel L ^a   Griebsch, Ingolf ^b   Bull, Catherine ^c   Brown, Jacqueline ^b   Wren, Christopher ^d   Dezateux, Carol ^a  

^a UNIVERSITY COLLEGE LONDON   (United Kingdom)

^b MRC Health Services Research Collaboration   (United Kingdom)

^c GREAT ORMOND STREET HOSPITAL   (United Kingdom)

^d FREEMAN HOSPITAL   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

ADULT; ARTICLE; CONGENITAL HEART MALFORMATION; CONTROLLED STUDY; DISEASE SEVERITY; FEMALE; HEALTH PRACTITIONER; HEALTH STATUS; HUMAN; MALE; NEUROLOGIC DISEASE; OUTCOME ASSESSMENT; PRIORITY JOURNAL; QUALITY OF LIFE; QUESTIONNAIRE; SCORING SYSTEM; VISUAL ANALOG SCALE;

ADOLESCENT; ADULT; AGED; ATTITUDE OF HEALTH PERSONNEL; ATTITUDE TO HEALTH; CHILD; DEVELOPMENTAL DISABILITIES; DISABLED CHILDREN; FEMALE; HEALTH STATUS INDICATORS; HEART DEFECTS, CONGENITAL; HUMANS; MALE; MIDDLE AGED; OUTCOME ASSESSMENT (HEALTH CARE); PARENTS; QUALITY OF LIFE; SEVERITY OF ILLNESS INDEX;

EID: 34247855738     PISSN: 00039888     EISSN: 14682044     Source Type: Journal    
DOI: 10.1136/adc.2005.075606     Document Type: Article

References (29)

1. Kramer MS, Etezadi-Amoli J, Ciampi A, et al. Parents' versus physicians' values for clinical outcomes in young febrile children. Pediatrics 1994;93:697-702.
2. The Bristol Royal Infirmary Inquiry. Day 4 transcript: oral submission to the inquiry from Mrs Penelope Plackett (22nd March 1999). Available at http:// www.bristol-inquiry.org.uk/evidence/transcripts/day4.htm (accessed 12 February 2007).
3. Lockwood S. "Evidence of me" in evidence based medicine? BMJ 2004;329:1033-5.
4. Saigal S, Stoskopf BL, Burrows E, et al. Stability of maternal preferences for pediatric health states in the perinatal period and 1 year later. Arch Pediatr Adolesc Med 2003;157:261-9.
5. Elwyn G, Edwards A, Wensing M, et al. Shared decision making observed in clinical practice: visual displays of communication sequence and patterns. J Eval Clin Pract 2001;7:211-21.
6. Jenney M, Campbell S. Measuring quality of life. Arch Dis Child 1997;77:347-54.
7. Menahem S. Counselling strategies for parents of infants with congenital heart disease. Cardiol Young 1998;8:400-7.
8. Vandvik IH, Forde R. Ethical issues in parental decision-making. An interview study of mothers of children with hypoplastic left heart syndrome. Acta Paediatr 2000;89:1129-33.
9. Bowling A, Ebrahim S. Measuring patients' preferences lor treatment and perceptions of risk. Quality in Health Care 2001;10:i2-i8.
10. Saigal S, Stoskopf B, Feeny D, et al. Differences in preferences for neonatal outcomes among health care professionals, parents and adolescents. JAMA 1999;281:1991-7.
11. Bennett JE, Sumner W, Downs SM, et al. Parents' utilities for outcomes of occult bacteremia. Arch Pediatr Adolesc Med 2000;154:43-8.
12. Kramer MS, MacLellan AM, Ciampi A, et al. Parents' vs physicians' utilities (values) for clinical outcomes in potentially bacteremic children. J Clin Epidemiol 1990;43:1319-25.
13. Eiser C, Morse R. Quality-of-life measures in chronic diseases of childhood. Health Technol Assess 2001;5:1-157.
14. Feeny D. A utility approach to the assessment of health-related quality of life. Med Care 2000;38:II151-II154.
15. Griffiths R. The abilities of young children. High Wycombe: ARICD (The Test Agency), 1984.
16. Feeny D, Furlong W, Barr RD. Multiattribute approach to the assessment of health-related quality of life: Health Utilities Index. Med Pediatr Oncol 1998;(Suppl 1):54-9.
17. Brooks R. EuroQol: the current state of play. Health Policy 1996;37:53-72.
18. Furlong W, Feeny D, Torrance GW, et al. Guide to design and development of health state utility instrumentation. Hamilton, Ontario: Centre for Health Economics and Policy Analysis, McMaster University, 1990.
19. Drummond MF, O'Brien B, Stoddart GL, et al. Methods for the economic evaluation of health care programmes, 2nd edn. Oxford: Oxford University Press, 1997.
20. Saigal S, Rosenbaum P, Stoskopf B, et al. Comprehensive assessment of the health status of extremely low birth weight children at eight years of age: comparison with a reference group. J Pediatr 1994;125:411-7.
21. Saigal S, Feeny D, Furlong W, et al. Comparison of the health-related quality of life of extremely low birth weight children and a reference group of children at age eight years. J Pediatr 1994;125:418-25.
22. Saigal S, Feeny D, Rosenbaum P, et al. Self-perceived health status and health-related quality of life of extremely low-birth-weight infants at adolescence. JAMA 1996;276:453-9.
23. Saigal S, Rosenbaum P, Feeny D, et al. Parental perspectives of the health status and health-related quality of life of teen-aged children who are extremely low birth weight and term controls. Pediatrics 2000;105:569-74.
24. Brazier J, Deverill M, Green C, et al. A review of the use of health status measures in economic evaluation. Health Technol Assess 1999;3:i-164.
25. Spieth LE. Generic health-related auality of life measures for children and adolescents. In: Koot HM, Wallander JL, eds. Quality of life in child and adolescent illness:concepts, methods and findings. Hove: Brunner-Routledge, 2001:49-88.
26. Rosenbaum PL, Saigal S. Measuring health-related quality of life in pediatric populations: conceptual issues. In: Spilker B, eds. Quality of life and pharmacoeconomics in clinical trials.2nd edn. Philadelphia: Lippincott-Raven, 1996:785-91.
27. Saw SM, Gazzard G, Eong KG, et al. Utility values and myopia in teenage school students. Br J Ophthalmol 2003;87:341-5.
28. Yi MS, Britto MT, Wilmolt RW, et al. Health values of adolescents with cystic fibrosis. J Pediatr 2003;142:133-40.
29. Hunink M, Glasziou P. Decision making in health and medicine. Integrating evidence and values. Cambridge: Cambridge University Press, 2001.