Skip to main content
Top
Published in: Health and Quality of Life Outcomes 1/2006

Open Access 01-12-2006 | Research

Health-related quality of life of Canadian children and youth prenatally exposed to alcohol

Authors: Brenda C Stade, Bonnie Stevens, Wendy J Ungar, Joseph Beyene, Gideon Koren

Published in: Health and Quality of Life Outcomes | Issue 1/2006

Login to get access

Abstract

Background

In Canada, the incidence of Fetal Alcohol Spectrum Disorder (FASD) has been estimated to be 1 in 100 live births. Caused by prenatal exposure to alcohol, FASD is the leading cause of neuro-developmental disabilities among Canadian children, and youth. Objective: To measure the health-related quality of life (HRQL) of Canadian children and youth diagnosed with FASD.

Methods

A prospective cross-sectional study design was used. One-hundred and twenty-six (126) children and youth diagnosed with FASD, aged 8 to 21 years, living in urban and rural communities throughout Canada participated in the study. Participants completed the Health Utilities Index Mark 3 (HUI3). HUI3 measures eight health attributes: vision, hearing, speech, ambulation, dexterity, emotion, cognition, and pain. Utilities were used to measure a single cardinal value between 0 and 1.0 (0 = all-worst health state; 1 = perfect health) to reflect the global HRQL for that child. Mean HRQL scores and range of scores of children and youth with FASD were calculated. A one-sample t-test was used to compare mean HRQL scores of children and youth with FASD to those from the Canadian population.

Results

Mean HRQL score of children and youth with FASD was 0.47 (95% CI: 0.42 to 0.52) as compared to a mean score of 0.93 (95% CI: 0.92 to 0.94) in those from the general Canadian population (p < 0.001). Children demonstrated moderate to severe dysfunction on the single-attributes of cognition and emotion.

Conclusion

Children and youth with FASD have significantly lower HRQL than children and youth from the general Canadian population. This finding has significant implications for practice, policy development, and research.
Appendix
Available only for authorised users
Literature
1.
go back to reference Canadian Pediatric Society Statement. (CPS): Fetal Alcohol Syndrome Pediatric Child Health 2002, 7: 161–174. Canadian Pediatric Society Statement. (CPS): Fetal Alcohol Syndrome Pediatric Child Health 2002, 7: 161–174.
2.
go back to reference Chudley A, Conry J, Cook J, Loock C, Rosales T, LeBlanc N, Public Health Agency of Canada's National Advisory Committee on Fetal Alcohol Spectrum Disorder: Fetal alcohol spectrum disorder: Canadian guidelines for diagnosis. CMAJ 2005, 172: S1-S21.PubMedCentralPubMedCrossRef Chudley A, Conry J, Cook J, Loock C, Rosales T, LeBlanc N, Public Health Agency of Canada's National Advisory Committee on Fetal Alcohol Spectrum Disorder: Fetal alcohol spectrum disorder: Canadian guidelines for diagnosis. CMAJ 2005, 172: S1-S21.PubMedCentralPubMedCrossRef
3.
go back to reference Roberts G, Nanson J: Best practices: fetal alcohol syndrome/fetal alcohol effects and the effects of other substances used during pregnancy. In Canada's Drug Strategy Division. Health Canada; 2000. Roberts G, Nanson J: Best practices: fetal alcohol syndrome/fetal alcohol effects and the effects of other substances used during pregnancy. In Canada's Drug Strategy Division. Health Canada; 2000.
4.
go back to reference Astley SJ, Clarren SK: Diagnosing the full spectrum of fetal alcohol exposed individuals: Introducing the 4-Digit Diagnostic Code. Alcohol Alcohol 2000, 35: 400–410.PubMedCrossRef Astley SJ, Clarren SK: Diagnosing the full spectrum of fetal alcohol exposed individuals: Introducing the 4-Digit Diagnostic Code. Alcohol Alcohol 2000, 35: 400–410.PubMedCrossRef
5.
go back to reference American Academy of Pediatrics (AAP): Fetal Alcohol syndrome and Alcohol-Related Neurodevelopmental Disorders. Pediatrics 2000, 106: 358–361. 10.1542/peds.106.2.358CrossRef American Academy of Pediatrics (AAP): Fetal Alcohol syndrome and Alcohol-Related Neurodevelopmental Disorders. Pediatrics 2000, 106: 358–361. 10.1542/peds.106.2.358CrossRef
6.
go back to reference Riley E, McGee C: Fetal alcohol spectrum disorders: an overview with emphasis on changes in brain and behavior. Exp Biol Med (Maywood) 2005, 230: 357–365. Riley E, McGee C: Fetal alcohol spectrum disorders: an overview with emphasis on changes in brain and behavior. Exp Biol Med (Maywood) 2005, 230: 357–365.
7.
go back to reference Streissguth A, Sampson P, Olson H, Bookstein F, Barr H, Scott M, Feldman J, Mirsky A: Maternal drinking during pregnancy: Attention and short-term memory in 14 year old offspring: A Longitudinal prospective study. Alcohol Clin Exp Res 1994, 18: 202–218. 10.1111/j.1530-0277.1994.tb00904.xPubMedCrossRef Streissguth A, Sampson P, Olson H, Bookstein F, Barr H, Scott M, Feldman J, Mirsky A: Maternal drinking during pregnancy: Attention and short-term memory in 14 year old offspring: A Longitudinal prospective study. Alcohol Clin Exp Res 1994, 18: 202–218. 10.1111/j.1530-0277.1994.tb00904.xPubMedCrossRef
8.
go back to reference Sulik K: Genesis of alcohol-induced craniofacial dysmorphism. Exp Biol Med 2005, 230: 366–375. Sulik K: Genesis of alcohol-induced craniofacial dysmorphism. Exp Biol Med 2005, 230: 366–375.
9.
go back to reference Jones K, Smith D: Recognition of the fetal alcohol syndrome in early infancy. Lancet 1973, 2: 999–1001. 10.1016/S0140-6736(73)91092-1CrossRef Jones K, Smith D: Recognition of the fetal alcohol syndrome in early infancy. Lancet 1973, 2: 999–1001. 10.1016/S0140-6736(73)91092-1CrossRef
10.
go back to reference Riley E, Mattson S, Li T, Jacobson S, Coles C, Kodituwakku P, Adnams C, Korkman M: Neurobehavioral consequences of prenatal alcohol exposure: an international perspective. Alcohol Clin Exp Res 2003, 27: 362–373. 10.1111/j.1530-0277.2003.tb02731.xPubMedCrossRef Riley E, Mattson S, Li T, Jacobson S, Coles C, Kodituwakku P, Adnams C, Korkman M: Neurobehavioral consequences of prenatal alcohol exposure: an international perspective. Alcohol Clin Exp Res 2003, 27: 362–373. 10.1111/j.1530-0277.2003.tb02731.xPubMedCrossRef
11.
go back to reference Coons S, Rao S, Keininger D, Hays R: A comparative review of generic quality of life instruments. Pharmacoeconomics 2000, 17: 13–35. 10.2165/00019053-200017010-00002PubMedCrossRef Coons S, Rao S, Keininger D, Hays R: A comparative review of generic quality of life instruments. Pharmacoeconomics 2000, 17: 13–35. 10.2165/00019053-200017010-00002PubMedCrossRef
12.
go back to reference Naughton M, Shumaker S, Anderson R, Czajkowski S: Psychological aspects of health-related quality of life measurement: Tests and Scales. In Quality of Life and Pharmacoeconomics. Edited by: Spilker B. Philadelphia: Lippincott-Raven Publishers; 1996:117–131. Naughton M, Shumaker S, Anderson R, Czajkowski S: Psychological aspects of health-related quality of life measurement: Tests and Scales. In Quality of Life and Pharmacoeconomics. Edited by: Spilker B. Philadelphia: Lippincott-Raven Publishers; 1996:117–131.
13.
go back to reference Wallander J, Schmitt M, Koot H: Quality of Life Measurement in Children and Adolescents: Issues, Instruments, and Applications. J Clin Psychol 2001, 57: 571–585. 10.1002/jclp.1029PubMedCrossRef Wallander J, Schmitt M, Koot H: Quality of Life Measurement in Children and Adolescents: Issues, Instruments, and Applications. J Clin Psychol 2001, 57: 571–585. 10.1002/jclp.1029PubMedCrossRef
14.
go back to reference Levi R, Drotar D: Critical issues and needs in health-related quality of life assessment of children and adolescents with chronic health conditions. In Measuring Health-Related Quality of Life in Children and Adolescents. Edited by: Drotar D. London: Lawrence Erlbaum Associates; 1998. Levi R, Drotar D: Critical issues and needs in health-related quality of life assessment of children and adolescents with chronic health conditions. In Measuring Health-Related Quality of Life in Children and Adolescents. Edited by: Drotar D. London: Lawrence Erlbaum Associates; 1998.
15.
go back to reference Cadman D: Construction of social value or utility-based health indices. In Final Report to the Ministry of Health. Hamilton: McMaster University; 1986. Cadman D: Construction of social value or utility-based health indices. In Final Report to the Ministry of Health. Hamilton: McMaster University; 1986.
16.
go back to reference Feeny D, Furlong W, Boyle M, Torrance G: Multi-attribute health status classification systems: Health Utilities Index. PhamacoEconomics 1995, 7: 490–502.CrossRef Feeny D, Furlong W, Boyle M, Torrance G: Multi-attribute health status classification systems: Health Utilities Index. PhamacoEconomics 1995, 7: 490–502.CrossRef
17.
go back to reference Saigal S, Feeny D, Furlong W, Rosenbaum P, Burrows E, Torrance G: Comparison of the health-related quality of life of extremely low birth weight children and a reference group of children at eight years. J Pediatr 1994, 125: 418–425. 10.1016/S0022-3476(05)83289-5PubMedCrossRef Saigal S, Feeny D, Furlong W, Rosenbaum P, Burrows E, Torrance G: Comparison of the health-related quality of life of extremely low birth weight children and a reference group of children at eight years. J Pediatr 1994, 125: 418–425. 10.1016/S0022-3476(05)83289-5PubMedCrossRef
18.
go back to reference Stade B: Honouring a Commitment: The experience of raising a child with Fetal Alcohol Syndrome. In Unpublished Master of Science Thesis. Graduate Department of Nursing, University of Toronto; 1994. Stade B: Honouring a Commitment: The experience of raising a child with Fetal Alcohol Syndrome. In Unpublished Master of Science Thesis. Graduate Department of Nursing, University of Toronto; 1994.
19.
go back to reference Drummond M: Introducing Economic and Quality of Life Measurements into Clinical Studies. Ann Med 2002, 33: 344–349.CrossRef Drummond M: Introducing Economic and Quality of Life Measurements into Clinical Studies. Ann Med 2002, 33: 344–349.CrossRef
20.
go back to reference Grootendorst P, Feeny D, Furlong W: Health Utilities Index Mark 3: evidence of construct validity for stroke and arthritis in a population health survey. Med Care 2000, 38: 290–299. 10.1097/00005650-200003000-00006PubMedCrossRef Grootendorst P, Feeny D, Furlong W: Health Utilities Index Mark 3: evidence of construct validity for stroke and arthritis in a population health survey. Med Care 2000, 38: 290–299. 10.1097/00005650-200003000-00006PubMedCrossRef
21.
go back to reference Horsman J, Furlong W, Feeny D, Torrance G: The Health Utilities Index (HUI(R)): concepts, measurement properties and applications. Health Qual Life Outcomes 2003, 1: 54. 10.1186/1477-7525-1-54PubMedCentralPubMedCrossRef Horsman J, Furlong W, Feeny D, Torrance G: The Health Utilities Index (HUI(R)): concepts, measurement properties and applications. Health Qual Life Outcomes 2003, 1: 54. 10.1186/1477-7525-1-54PubMedCentralPubMedCrossRef
22.
go back to reference Feeny D, Furlong W, Torrance GW, Goldsmith CH, Zhu Z, DePauw S, Denton M, Boyle M: Multiattribute and single-attribute utility functions for the health utilities index mark 3 system. Med Care 2002, 40: 113–128. 10.1097/00005650-200202000-00006PubMedCrossRef Feeny D, Furlong W, Torrance GW, Goldsmith CH, Zhu Z, DePauw S, Denton M, Boyle M: Multiattribute and single-attribute utility functions for the health utilities index mark 3 system. Med Care 2002, 40: 113–128. 10.1097/00005650-200202000-00006PubMedCrossRef
23.
go back to reference Furlong W, Feeny D, Torrance G: Health Utilities Index: Algorithm for determining HUI Mark 2/Mark 3 health status classification level, health status, health related quality of life scores and single-attribute level utility scores from 40-item interviewer-administered health status questionnaire. Dundas, ON: Health Utilities Inc; 1999. Furlong W, Feeny D, Torrance G: Health Utilities Index: Algorithm for determining HUI Mark 2/Mark 3 health status classification level, health status, health related quality of life scores and single-attribute level utility scores from 40-item interviewer-administered health status questionnaire. Dundas, ON: Health Utilities Inc; 1999.
24.
go back to reference Furlong W, Feeny D, Torrance G, Barr R: The Health Utilities Index (HUI) system for assessing health-related quality of life in clinical studies. Ann Med 2001, 33: 375–384.PubMedCrossRef Furlong W, Feeny D, Torrance G, Barr R: The Health Utilities Index (HUI) system for assessing health-related quality of life in clinical studies. Ann Med 2001, 33: 375–384.PubMedCrossRef
25.
go back to reference Furlong W, Feeny D, Torrance G, Goldsmith S, DePauw S, Zhu Z, Denton M, Boyle M: Multiplicative multi-attribute utility function for the health utilities index Mark 3 (HUI3) systems: A technical report. Hamilton, Canada: CHEPA; 1998. Furlong W, Feeny D, Torrance G, Goldsmith S, DePauw S, Zhu Z, Denton M, Boyle M: Multiplicative multi-attribute utility function for the health utilities index Mark 3 (HUI3) systems: A technical report. Hamilton, Canada: CHEPA; 1998.
26.
go back to reference Glaser A, Davies K, Walker D, Brazier D: Influence of proxy respondents and mode of administration on health status assessment following central nervous system tumours in childhood. Qual Life Res 1997, 6: 43–53. 10.1023/A:1026465411669PubMedCrossRef Glaser A, Davies K, Walker D, Brazier D: Influence of proxy respondents and mode of administration on health status assessment following central nervous system tumours in childhood. Qual Life Res 1997, 6: 43–53. 10.1023/A:1026465411669PubMedCrossRef
27.
go back to reference Grootendorst P, Feeny D, Furlong W: Does it matter whom and how you ask? inter-and intra-rater agreement in the Ontario Health Survey. J Clin Epidemiol 1997, 50: 127–135. 10.1016/S0895-4356(96)00314-9PubMedCrossRef Grootendorst P, Feeny D, Furlong W: Does it matter whom and how you ask? inter-and intra-rater agreement in the Ontario Health Survey. J Clin Epidemiol 1997, 50: 127–135. 10.1016/S0895-4356(96)00314-9PubMedCrossRef
28.
go back to reference Neumann P, Sandberg E, Araki S, Kuntz K, Feeny D, Weinstein M: A comparison of HUI2 and HUI3 utility scores in Alzheimer's disease. Med Decis Making 2000, 20: 413–422.PubMedCrossRef Neumann P, Sandberg E, Araki S, Kuntz K, Feeny D, Weinstein M: A comparison of HUI2 and HUI3 utility scores in Alzheimer's disease. Med Decis Making 2000, 20: 413–422.PubMedCrossRef
29.
go back to reference Statistics Canada: Health Indicators: Data Tables. 82–221-XIE. Ottawa: Author; 2003. Statistics Canada: Health Indicators: Data Tables. 82–221-XIE. Ottawa: Author; 2003.
30.
go back to reference Saigal S, Feeny D, Rosenbaum P, Furlong W, Burrows E, Stoskopf B: Self-perceived health status and health-related quality of life of extremely low-birth-weight infants at adolescence. JAMA 1996, 27: 453–459. 10.1001/jama.276.6.453CrossRef Saigal S, Feeny D, Rosenbaum P, Furlong W, Burrows E, Stoskopf B: Self-perceived health status and health-related quality of life of extremely low-birth-weight infants at adolescence. JAMA 1996, 27: 453–459. 10.1001/jama.276.6.453CrossRef
31.
go back to reference Van Schaik C, Barr R, Depauw S, Furlong W, Feeny D: Assessment of health status and health-related quality of life in survivors of hodgkin's disease in childhood. Int J Cancer 1999, 12: 32–38. 10.1002/(SICI)1097-0215(1999)83:12+<32::AID-IJC7>3.0.CO;2-VCrossRef Van Schaik C, Barr R, Depauw S, Furlong W, Feeny D: Assessment of health status and health-related quality of life in survivors of hodgkin's disease in childhood. Int J Cancer 1999, 12: 32–38. 10.1002/(SICI)1097-0215(1999)83:12+<32::AID-IJC7>3.0.CO;2-VCrossRef
32.
go back to reference Barr R, Simpson T, Whiten A, Rush B, Furlong W, Feeny D: Health-related quality of life in survivors of tumors of the central nervous system in childhood: A preference-based approach to measurement in a cross-sectional study. Eur J Cancer 1999, 35: 248–255. 10.1016/S0959-8049(98)00366-9PubMedCrossRef Barr R, Simpson T, Whiten A, Rush B, Furlong W, Feeny D: Health-related quality of life in survivors of tumors of the central nervous system in childhood: A preference-based approach to measurement in a cross-sectional study. Eur J Cancer 1999, 35: 248–255. 10.1016/S0959-8049(98)00366-9PubMedCrossRef
33.
go back to reference Barr R, Petric C, Furlong W: Health-related quality of life during post-inducing chemotherapy in children with acute lymphoblastic leukemia in remission: an influence of corticosteroid therapy. Int J Oncol 1997, 11: 333–339.PubMed Barr R, Petric C, Furlong W: Health-related quality of life during post-inducing chemotherapy in children with acute lymphoblastic leukemia in remission: an influence of corticosteroid therapy. Int J Oncol 1997, 11: 333–339.PubMed
34.
go back to reference Barr R, Chalmers D, De Pauw S, Furlong W, Weitzman S, Feeny D: Health-related quality of life in survivors of Wilm's tumor and advanced neuroblastoma: A cross-sectional study. J Clin Oncol 2000, 18: 3280–3287.PubMed Barr R, Chalmers D, De Pauw S, Furlong W, Weitzman S, Feeny D: Health-related quality of life in survivors of Wilm's tumor and advanced neuroblastoma: A cross-sectional study. J Clin Oncol 2000, 18: 3280–3287.PubMed
35.
go back to reference Glaser A, Furlong W, Walker D, Fielding K, Davies K, Feeny D, Barr R: Applicability of the Health Utilities Index to a population of childhood survivors of central nervous system tumours in the U.K. Eur J Cancer 1999, 35: 256–261. 10.1016/S0959-8049(98)00367-0PubMedCrossRef Glaser A, Furlong W, Walker D, Fielding K, Davies K, Feeny D, Barr R: Applicability of the Health Utilities Index to a population of childhood survivors of central nervous system tumours in the U.K. Eur J Cancer 1999, 35: 256–261. 10.1016/S0959-8049(98)00367-0PubMedCrossRef
36.
go back to reference Revicki D, Wood M: Patient-assigned health status utilities for depression-related outcomes: differences by depression severity and antidepressant medication. J Affect Discord 1998, 48: 25–36. 10.1016/S0165-0327(97)00117-1CrossRef Revicki D, Wood M: Patient-assigned health status utilities for depression-related outcomes: differences by depression severity and antidepressant medication. J Affect Discord 1998, 48: 25–36. 10.1016/S0165-0327(97)00117-1CrossRef
37.
go back to reference Stade B, Stevens B, Ungar W, Beyene J, Koren G: Feeling Different: The experience of living with Fetal Alcohol Spectrum Disorder. Unpublished PhD Thesis: Section III. Department of Medical Science University of Toronto; 2003. Stade B, Stevens B, Ungar W, Beyene J, Koren G: Feeling Different: The experience of living with Fetal Alcohol Spectrum Disorder. Unpublished PhD Thesis: Section III. Department of Medical Science University of Toronto; 2003.
38.
go back to reference Herjanic B, Herjanic M, Brown F, Wheatt T: Are children reliable reporters? J Abnorm Child Psychol 1975, 3: 41–48. 10.1007/BF00916029PubMedCrossRef Herjanic B, Herjanic M, Brown F, Wheatt T: Are children reliable reporters? J Abnorm Child Psychol 1975, 3: 41–48. 10.1007/BF00916029PubMedCrossRef
39.
go back to reference Herjanic B, Reich W: Development of a structured psychiatric interview for children: agreement between child and parent on individual symptoms. J Abnorm Child Psychol 1982, 10: 307–324. 10.1007/BF00912324PubMedCrossRef Herjanic B, Reich W: Development of a structured psychiatric interview for children: agreement between child and parent on individual symptoms. J Abnorm Child Psychol 1982, 10: 307–324. 10.1007/BF00912324PubMedCrossRef
40.
go back to reference Saigal S, Stoskopf B, Feeny D, Furlong W, Burrows E, Rosenbaum P, Hoult L: Differences in preferences for neonatal outcomes among health care professionals, parents and adolescents. JAMA 1999, 281: 1991–1997. 10.1001/jama.281.21.1991PubMedCrossRef Saigal S, Stoskopf B, Feeny D, Furlong W, Burrows E, Rosenbaum P, Hoult L: Differences in preferences for neonatal outcomes among health care professionals, parents and adolescents. JAMA 1999, 281: 1991–1997. 10.1001/jama.281.21.1991PubMedCrossRef
41.
go back to reference Huber M: Health-related quality of life of Austrian children and adolescents with cochlear implants. Int J Pediatr Otorhinolaryngol 2005, 69: 1089–1101. 10.1016/j.ijporl.2005.02.018PubMedCrossRef Huber M: Health-related quality of life of Austrian children and adolescents with cochlear implants. Int J Pediatr Otorhinolaryngol 2005, 69: 1089–1101. 10.1016/j.ijporl.2005.02.018PubMedCrossRef
42.
go back to reference Theunissen NC, Vogels TG, Koopman HM, Verrips GH, Zwinderman KA, Verloove-Vanhorick SP, Wit JM: The proxy problem: child report versus parent report in health-related quality of life research. Qual Life Res 1998, 7: 387–397. 10.1023/A:1008801802877PubMedCrossRef Theunissen NC, Vogels TG, Koopman HM, Verrips GH, Zwinderman KA, Verloove-Vanhorick SP, Wit JM: The proxy problem: child report versus parent report in health-related quality of life research. Qual Life Res 1998, 7: 387–397. 10.1023/A:1008801802877PubMedCrossRef
43.
go back to reference Eiser C, Morse R: Can parents rate their child's health-related quality of life? Results of a systematic review. Qual Life Res 2001, 10: 347–357. 10.1023/A:1012253723272PubMedCrossRef Eiser C, Morse R: Can parents rate their child's health-related quality of life? Results of a systematic review. Qual Life Res 2001, 10: 347–357. 10.1023/A:1012253723272PubMedCrossRef
44.
go back to reference Verrips G, Stuifbergen M, den Ouden A, Bonsel G, Gemke R, Paneth N, Verloove-Vanhorick SP: Measuring health status using the Health Utilities Index: agreement between raters and between modalities of administration. J Clin Epidemiol 2001, 54: 475–481. 10.1016/S0895-4356(00)00317-6PubMedCrossRef Verrips G, Stuifbergen M, den Ouden A, Bonsel G, Gemke R, Paneth N, Verloove-Vanhorick SP: Measuring health status using the Health Utilities Index: agreement between raters and between modalities of administration. J Clin Epidemiol 2001, 54: 475–481. 10.1016/S0895-4356(00)00317-6PubMedCrossRef
45.
go back to reference Landgraf J: Comparison of health status profiles for children with medical conditions: Preliminary psychometric and clinical results. Children's Health and Quality of Life Project, Washington, DC 1993. Landgraf J: Comparison of health status profiles for children with medical conditions: Preliminary psychometric and clinical results. Children's Health and Quality of Life Project, Washington, DC 1993.
Metadata
Title
Health-related quality of life of Canadian children and youth prenatally exposed to alcohol
Authors
Brenda C Stade
Bonnie Stevens
Wendy J Ungar
Joseph Beyene
Gideon Koren
Publication date
01-12-2006
Publisher
BioMed Central
Published in
Health and Quality of Life Outcomes / Issue 1/2006
Electronic ISSN: 1477-7525
DOI
https://doi.org/10.1186/1477-7525-4-81

Other articles of this Issue 1/2006

Health and Quality of Life Outcomes 1/2006 Go to the issue