USING A COMMON FORM FOR CONSISTENT COLLECTION AND REPORTING OF FASD DATA FROM ACROSS CANADA: A FEASIBILITY STUDY

Main Article Content

Sterling Clarren
Celeste I. Halliwell
Christine M. Werk
Rolf J. Sebaldt
Annie Petrie
Christine Lilley
Jocelynn Cook

Keywords

FASD - Fetal alcohol spectrum disorder, FAS - Fetal alcohol syndrome, pFAS - Partial fetal alcohol syndrome, ARND - Alcohol related neurodevelopmental disorder

Abstract

Background


This study was undertaken to determine the feasibility of collecting information on individuals newly diagnosed with Fetal Alcohol Spectrum Disorder (FASD) in multi-disciplinary diagnostic programs across Canada.


Objective


To determine the frequencies of specific diagnoses within the spectrum, the frequencies and patterns of specific functional deficits, and the range of recommendations made for intervention and management for children and adults.


Methods


All qualifying clinics in Canada were invited to join this project and complete questionnaires on the patients that were seen during the research period.


Results


Over half of all clinics participate d (25/45) and submitted the information requested on 307 individuals, ranging in age from 1 to 42 years. Two hundred and eighty- nine individuals had a diagnosis of FASD and were analysed further. The percent of individuals with Fetal Alcohol Syndrome was 2.1 % of those with FASD diagnoses, which was lower than expected based on the literature. The level of disability among the entire FASD was always significant with at least 3 domains measured as severely impaired via the criteria for diagnosis but almost one -quarter were extremely disabled with 6 of a possible 9 brain domains measured significantly impaired. No specific patterns of functional disability were found to represent any significant subgroup of the patients. An average of 13 new recommendations for intervention and management were made for each patient in health, mental health, social services, and education.


Conclusion


Although this was a pilot study with a relatively small sample, it is the largest collection of cases of FASD from multiple sites in one country ever published to our knowledge. It illustrates that important patient information can be collected across clinical programs considering the diagnosis of FASD but only with financial support for time and personnel. Using the methodology of a common data form, consistent data collection can be achieved and patterns and trends can be identified that can help with assuring consistency in diagnosis and with planning for improved patient outcomes.

Abstract 168 | PDF Downloads 77

References

1. Clarren SK , Smith DW. The fetal alcohol syndrome. New England Journal of Medicine 1978;298(19): 1063- 1067.
2. Astley SJ, Clarren SK. Diagnosing the full spectrum of fetal alcohol exposed individuals: Introducing the 4 -digit diagnostic code. Alcohol & Alcoholism 2002; 35(4) :400- 410.
3. Chudley AE, Conry J, Cook JL, Loock C, Rosales T, LeBlanc N. Fetal alcohol spectrum disorder: Canadian guidelines for diagnosis. Canadian Medical Association Journal 2005;172(5 suppl) : S1 -S21.
4. Center for Substance Abuse Prevention, Substance Abuse and Mental Health Services Administration, U .S. Department of Health and Human Services. “The Physical Effects of Fetal Alcohol Spectrum Disorders” 2009. http://www.fasdcenter.samhsa.gov/documents /WUNK_Physical_Effects.pdf
5. May PA, Gossage P. Estimating the prevalence of fetal alcohol syndrome: A summary. Alcohol Research & Health 2001;25(3) :159- 167.
6. Thanh NX, Johnsson E, Salmon A, Sebastia n- ski M. Incidence and prevalence of fetal alcohol spectrum disorder by sex and age group in Alberta, Canada. Journal of Population Therapeutics and Clinical Pharmacology 2014;21(3) :e395- 3404.
7. Clarren SK, Lutke J, Sherbuck M. The Canadian Guidelines and the interdisciplinary clinical capacity of Canada to diagnose fetal alcohol spectrum disorder. Journal of Population Therapeutics and Clinical Pharmacology 2011;18(3):e494- e499.
8. Agrawai R, Imielinski T, Swami A. Mining association rules between sets of items in large databases. Proceeding of the 1992 ACM SIGMOD Conference. Washington, DC, USA, May 1993.
9. Sampson PD, Streissguth AP, Bookstein FL, Little RE, Clarren SK, Dehaene P, et al. Incidence of fetal alcohol syndrome and prevalence of alcohol -relate d neurodevelopmental disorder. Teratology 1987;56(5) :317- 326.
10. Public Health Agency of Canada (2008) Canadian Perinatal Health Report, 2008 Edition, Public Health Agency of Canada, Ottawa, ON, 2008; http://www.phacaspc.gc.ca/publicat/2008/cphr -rspc/pdf/cphr -rspc08- eng.pdf
11. Clarren SK, Alvord EC Jr., Sumi SM, Streissguth AP, Smith DW. Brain malfo r- mations related to prenatal exposure to ethanol. Journal of Pediatrics 1976;92(1) :64- 67.
12. West JR. (ed) Alcohol and Brain Development, New York, Oxford University Press, 1986.
13. Abel EL. (ed) Fetal Alcohol Syndrome: from Mechanism to Prevention, New York, CRC Press, 1996.
14. Sulik K, Johnston M, Webb M. Fetal alcohol syndrome: embryogenesis in a mouse model. Science 1981;214: 936 -938.
15. Weinberg J. Hyper responsiveness to stress: differential effects of prenatal ethanol on males and females. Alcoholism: Clinical and Experimental Research 1998;12: 647- 652.
16. Sakar DK, Kuhn J, Marano J, Chen C, B o- yadjieva N. Alcohol exposure during the developmental period induces beta-endorphin neuronal death and causes alterations in the opioid control of stress axis function. Endocrinology 2007;148: 2828- 2834.
17. Camarillo C, Miranda RC. Ethanol exposure during neurogenesis induces persistent effects on neuronal maturation: evidence from an ex vivo model of fetal cerebral cortical neuroep i- thelial progenitor maturation. Gene Expression 2008;14(3) :159 -171.

Most read articles by the same author(s)