2. Centro di Riferimento Alcologico della Regione Lazio MAURO CECCANTI Brussels 9 September 2009 MAURO CECCANTI Brussels 9 September 2009 EPIDEMIOLOGY OF FASD IN A PROVINCE OF ITALY

3. Centro di Riferimento Alcologico della Regione Lazio HOW BIG IS THE PROBLEM? BACKGROUND PASSIVE ASCERTAINMENT Clinic-based Clinic-based Record-based Record-based FAS 0,33 – 2,0/1000 FASD 9/1000 ACTIVE ASCERTAINMENT Minority, low-SES* Minority, low-SES* Washington (Clarren KS 2001) Washington (Clarren KS 2001) S.AFRICA FAS: 46-75/1000 FAS 3.1/1000 UNITED STATES TODAY FAS 0,6-3.0/1000 FASD 10/1000 Prevalence of FASD in western Countries Accurate éstimates of the prevalence and characterìstics of fetal alcohol syndrome (FAS) and fetal alcohol spectrum disorders (FASD) in a Western European population are lacking. *SES: Socioeconomic-status

4. Centro di Riferimento Alcologico della Regione Lazio Pilot project of in-school prevalence, funded by NIH-NIAAA and Lazio Region (2003 -2005). Italy is predominantly middle Socio-Economic Status (SES) with regular, moderate drinking, practiced during meals. First population-based FASD epidemiology study ever in Western Europe. EPIDEMIOLOGY OF FAS IN ITALY

5. Centro di Riferimento Alcologico della Regione Lazio

6. Centro di Riferimento Alcologico della Regione Lazio School physicians Screening for height, weight, head circumference ( 10 Percentile) IPDA* (Terreni) DBD** (Pelham) Behavior and learning Teachers Parents INITIAL DATA COLLECTION - TIER I SCREENING *IPDA: Questionario osservativo per lIdentificazione Precoce delle Difficoltà di Apprendimento **DBD: Parent Teacher Pelham Disruptive Behaviour Disorder rating scale Maternal interview: risk factors

7. Centro di Riferimento Alcologico della Regione Lazio DIAGNOSTIC PROCEDURES - TIER II Language comprehension (Rustioni) Raven-CPM* WISC-r** Psychological assessment Dysmorphology Index (IOM criteria) Dysmorphology examination 4 Dysmorphologists 2 teams Psychologists *Raven-Colored Progressive Matrices **Wechsler Intelligence Scale for Children-Revised

8. Centro di Riferimento Alcologico della Regione Lazio 46 FASD 416 SELECTED 416 SELECTED 976 CONSENTS GIVEN 976 CONSENTS GIVEN 1988 POPULATION 1988 POPULATION TIER I Maternal Interview H, W, OFC Behaviour TIER II Dysmorphology exam Tests CASE CONFERENCE FOR FINAL DIAGNOSIS

9. Centro di Riferimento Alcologico della Regione Lazio DEMOGRAPHIC AND GROWTH PARAMETERS Significant differences between groups, were also found for facial features: Significant differences between groups, were also found for facial features: Palpebra fissure length, philtrum length, ptosis, epicanthal folds, anteverted nostrils, long philtrum, smooth philtrum, and narrow vermilion border OFC (cm) Mean (SD) 51.9 (1.5) 49.1 (1.0) 50.6 (1.7) 52.0 (1.3) < 0.001 P Control Children (n = 116) Children With PFAS (n = 36) Children With FAS (n = 8) Children In Study (n = 976) Variable NSAge NS Sex <0.0013.6 (2.9)11.2 (4.0)15.8 (1.9) Dysmorphology Score*** Mean (SD)

10. Centro di Riferimento Alcologico della Regione Lazio WISC-R: children with FASD showed significantly lower scores on Verbal, Performance, Full scale IQ

11. Centro di Riferimento Alcologico della Regione Lazio Child Variables FAS Mean Score (SD) (n=8) PFAS Mean Score (SD) (n=36) Controls Mean Score (SD) (n=116) P Developmental Traits Language comprehension a 3.1 (2.0)3.6 (2.1)4.8 (1.7)< 0.001 Non – verbal I.Q. b 50.6 (28.7)55.6 (22.3)71.0 (21.2)< 0.001 Behavior c (FASD) 9.3 (5.8)3.9 (3.7)< 0.001 a.Rustioni qualitative Test b.Raven Coloured Progressive Matrices c.Personal Behaviour Checklist (PBCL – 36) DEVELOPMENTAL AND BEHAVIORAL INDICATORS P. May, Ceccanti M., et al. in press

12. Centro di Riferimento Alcologico della Regione Lazio COMPARISONS OF MATERNAL AGE AND DRINKING MEASURES ACROSS GROUPS Maternal Variables FAS Mean (SD) (n=8) PFAS Mean (SD) (n=36) Controls Mean (SD) (n=8) P Maternal age during index pregnancy Mean (SD) 31.5 (6.0)30.5 (5.2)29.2 (5.4)NS Report drinking during pregnancy (%) 50.054.840.0NS Mean drinks per current week (SD)* 19.0 (25.0)**3.0 (5.3)1.7 (2.6)<0.001 Mean drinks per current drinking day (SD)* 3.0 (3.4)**1.0 (0.4)0.9 (0.5)<0.001 P. May, Ceccanti M., et al. in press *Among those who reported drinking during pregnancy; includes current non-drinkers ** T-test significantly different (p< 0.01) from controls Maternal drinking data support damage associated with physical and behavioural development problems

13. Centro di Riferimento Alcologico della Regione Lazio FASD PREVALENCE IN ITALY () (May P., Ceccanti M. et al., in press) N ETOH Confirmed % NOT ETOH NOT Confirmed % Rate for Sample* Rate for Entire Class** FAS862.537.58.24 PFAS3658.341.736.918.1 ARND1100.00.01.00.5 ARBD1100.00.01.00.5 TOTAL46--47.123.1 *N=976 children screened **N=1988 assuming no children with FASD were missed by the consent and screening process

14. Centro di Riferimento Alcologico della Regione Lazio Regular drinking during meals in a well-nourished and well-educated maternal population, as opposed to a poorly nourished, binge drinking population, however can produce a number of children with FASD FASD rates are substantially higher than previous estimates for the general populations of Western Europe or the U. S. CONCLUSIONS 1/2

15. Centro di Riferimento Alcologico della Regione Lazio This message may well resonate for other Western European populations. As children with a FASD present substantial challenges to parents, schools, and societies, there is a need to identify them early so that their development can be maximized and FASD prevention initiated for future generations. Children with FAS or PFAS have impairment or lower scores on standard tests of intelligence, nonverbal reasoning, and language comprehension, as well as more inattentive symptoms and more behavioural problems CONCLUSIONS 2/2

16. THANK YOU! Mauro CECCANTI Centro di Riferimento Alcologico della Regione Lazio