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Preliminary Results of Pilot
Research on FASD in Korea

         Hae Kook Lee

  The Catholic University of Korea
   Uijeongbu St.Mary’s Hospital
     Department of Psychiatry
Alcohol consumption in Korea




                                            (Rehm J, 2009)
             See http://www.who.int/globalatlas/default.asp
Alcohol Use among Adult Women,
1989-2007




      Source: Ministry for Health, Welfare and Family Affairs
                                                                3
Overall Trend in Gender Differen
   ce in Prevalence of AUD
                Lifetime Prevalence
                              Alcohol
         Alcohol Abuse
                            Dependence
         male     female   male       female

  1991   23.6       1.4    17.2         1.0

  2001   12.6       1.8    16.0         4.6


                             (HK Lee, et al., 2010)
Age Difference in
Prevalence of AUD




             (HK Lee, et al., 2010)
Drinking rate in pregnant women
     Alcohol Use Rate              %

 The year before pregnancy
                    Any use      77.1%
                 3 SD more       42.6%

 This pregnancy
                   Any use      16.4%
                                             12.2% of pregnant
                3 SD more        2.9%        women (about 1 in 8)
                                             reported any alcohol
 Previous 30 days                            use in the U.S.
                     Any use     12.2%
                  3 SD moer      0.5%


                    (SH Lee, et al., 2010)
And then,,,
• The rate of drinking and alcohol use
  disorders are increasing especially in
  younger women in Korea.

• Therefore, we could expect that there
  might be substantial risk of FASD in
  number of kids with FASD in Korea.
However, we have just several case
       reports on kids with FAS,,,
•   Hong KD, Yoo IC, Choi HS, Lee DH, Lee SJ. A case of fetal alcohol syndrome.
    Korean J Pediatr 1988;31:375-80.
•   Kim EJ, Yang SM, Yun J, Lee HK, Yu YH, Lee HS. A Case of Fetal Alcohol
    Syndrome. J Korean Pediatr Soc. 1998 Jul;41(7):1001-1005.
•   Kim JH, Han MK, Kim JL, Park YI, Lee JJ. A Case of Fetal Alcohol Syndrome.
    J Korean Child Neurol Soc. 2001 Oct;9(2):393-397.
•   Chang JH, Namgung R, Park MS, Park Kin, Lee JS, Lee Chul : A Case of Fetal
    Alcohol Syndrome with Persistent Pulmonary Hypertension of the Newborn.
    Korean J Pediatr. 2004 Nov;47(11):1220-1224.
•   Cho YY, Oh HJ, Han SJ, Sung SH, Bae GH, Shon HS, Yoon HD : A Case of Fetal
    Alcohol Syndrome with Secondary Amenorrhea. J Korean Soc Endocrinol. 2005
    Oct;20(5):524-530.
•   Cho YK, Chang SD, Kim YC, Lee SY. A Case of Fetal Alcohol Syndrome with
    Esotropia. J Korean Ophthalmol Soc. 2005 Oct;46(10):1756-1759.
•   Bhang SY, Ahn DH, Lee YJ, An HY, Ahn JH The First Report of Fetal Alcohol
    Effect in a 12 Year-Old Child in Korea. Psychiatry Invest 2009;6:50-53.
                                                                                  8
How could we start ?
                                Outreach to institution for
                                       disabled kid
Drinking                          Work with disabled kid
Mother                              registration system



Reliable maternal drinking                 Difficult to getting
        information                        information about
     Barrier to getting                    maternal drinking
        information                       Easy to examination
 Long term follow up to                  about FASD with Kids
       confirm FASD


     Clinical based referral model                      Disabled
          Inter referral system                           Kids
             (OB - PD - NP)
Exploratory visit & Pilot study
•   Un experienced specialist
•   No social awareness
•   No data to support the need for research
•   Social stigma and denial

                   Develop pilot project
            Work with experienced specialist
            Visit various setting of institution
                     (High risk group)
             Trial of diagnosis of FASD kids
Process
Selection of Institution
Institution for MR kid, Orphanage, Special
school,,,


      Screening
      Height or Weight is Under 10 percentile



            Diagnosis
            Dysmorphologic examination
Inclusion criteria for diagnostic
          examination
• Age – from 5 to 16 yrs
• Kids with Mental Retardation
• Exclusion of Kids with Cerebral palsy,
  Down syndrome, and so forth…
• Also, behavioral referrals were solicited
  from teachers.
Visiting Schedule
     Aug 2nd (Mon)      Aug 3rd (Tue)       Aug 4th(Wed)         Aug 5th(Thur)

9    Ins for MR kid      Orphanage              Break             Ins for MR

10   7:30 departure     8:30 departure                           8:00 departure
     Uijeongbu city
11                       Seoul(south)                             Seoul(north)
         (north)
12     1 pm finish       12:00 finish
     transfer & hospi
1                          transfer            transfer             transfer
         tal visit
2      Orphanage        Ins for MR kid       Special edu.        FASD workship

3       2:30 start                             Day care              Hotel

4                                        Uijeongbu city(north)

5                                             Ins for MR

6      5:30 finish                           Seoul(north)
Overall Rate
               Total       After                  Likely to be
Institution                            Deffered
               Subject     screening              Confirmed
Institution    4 site
                                       N=21       N=11
for Kid with   142         N=50
                                       42%        22%
MR
               2 site                  N=15       N=2
Orphanage                  N=34
               137                     44%        6%
Special        1 site                  N=4        N=0
                           N=9
Education      28                      44%        0%
                                       N=40       N=13
               307         N=93
Total                                  43%        14%
Prevalence of Fetal Alcohol Syndrome (FAS) and Partial
Fetal Alcohol Syndrome (pFAS) in Students Entering Sch
           ool via Active Case Ascertainment
                                                                          FAS
     Location                                   Socioeconomic
                            Population                                (FAS+pFAS)
 (Reference Year)                                   Status
                                                                     Rate per 1000

United States: Mid-     75% white; 25%        Middle SES with full       6 – 11
Western Medium          American Indian,      range from Low to        (14 – 25)
Size City (May et al.   African American      Upper
2009)                   and Asian
Italy; Lazio Region     Predominantly white   Middle SES                 4–9
(May et al. 2007)                                                      (27 – 55)
South Africa:           85% Mixed Ancestry    Low Middle SES            51 – 67
Western Cape            (“Coloured”), 15%     White: Middle –          (68 – 90)
(2007)                  European White        Upper SES
South Africa:           64% Mixed Ancestry    Low & Middle SES           6 – 11
Northern Cape           36% Native Black                               (14 – 25)
(Urban et al. 2008)
Rate of facial dysmorphology
                          Thin        Short        Rail road
               Smooth                                          Hockey stick   Clino-    Campo-
category                  Vermilion   Palperbral   track
               Philtrum                                        crease         dactyly   dactyly
                          border      fissure


 Institution   N=11       N=15        N=17         N=11        N=5            N=7       N=4
   for MR      21%        32%         37%          21%         10%            15%       8%

                                                               N=3
               N=2        N=3         N=10         N=10                       N=3       N=2
Orphanage                                                      9%
               8%         9%          30%          29%                        9%        6%

  Special      N=0        N=0         N=2          N=1         N=2            N=1       N=0
  school       0%         0%          40%          14%         28%            14%       0%

               N=13       N=18        N=29         N=22        N=10           N=11      N=6
    Total
               15%        20%         33%          25%         10%            13%       7%
Rail road Track
Hockey Stick Crease
Clynodactyly & Campodactyly
FAS case with thin vermilion border-1
FAS case with thin vermilion border-2
Future Direction

           Clinic base
           case control
               studies


Surveillance
  system

                     Active case
                   ascertainment
                    approaches
Thanks !

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마더리스크라운드 - FASD 카톨릭의대 이해국 교수

  • 1. Preliminary Results of Pilot Research on FASD in Korea Hae Kook Lee The Catholic University of Korea Uijeongbu St.Mary’s Hospital Department of Psychiatry
  • 2. Alcohol consumption in Korea (Rehm J, 2009) See http://www.who.int/globalatlas/default.asp
  • 3. Alcohol Use among Adult Women, 1989-2007 Source: Ministry for Health, Welfare and Family Affairs 3
  • 4. Overall Trend in Gender Differen ce in Prevalence of AUD Lifetime Prevalence Alcohol Alcohol Abuse Dependence male female male female 1991 23.6 1.4 17.2 1.0 2001 12.6 1.8 16.0 4.6 (HK Lee, et al., 2010)
  • 5. Age Difference in Prevalence of AUD (HK Lee, et al., 2010)
  • 6. Drinking rate in pregnant women Alcohol Use Rate % The year before pregnancy Any use 77.1% 3 SD more 42.6% This pregnancy Any use 16.4% 12.2% of pregnant 3 SD more 2.9% women (about 1 in 8) reported any alcohol Previous 30 days use in the U.S. Any use 12.2% 3 SD moer 0.5% (SH Lee, et al., 2010)
  • 7. And then,,, • The rate of drinking and alcohol use disorders are increasing especially in younger women in Korea. • Therefore, we could expect that there might be substantial risk of FASD in number of kids with FASD in Korea.
  • 8. However, we have just several case reports on kids with FAS,,, • Hong KD, Yoo IC, Choi HS, Lee DH, Lee SJ. A case of fetal alcohol syndrome. Korean J Pediatr 1988;31:375-80. • Kim EJ, Yang SM, Yun J, Lee HK, Yu YH, Lee HS. A Case of Fetal Alcohol Syndrome. J Korean Pediatr Soc. 1998 Jul;41(7):1001-1005. • Kim JH, Han MK, Kim JL, Park YI, Lee JJ. A Case of Fetal Alcohol Syndrome. J Korean Child Neurol Soc. 2001 Oct;9(2):393-397. • Chang JH, Namgung R, Park MS, Park Kin, Lee JS, Lee Chul : A Case of Fetal Alcohol Syndrome with Persistent Pulmonary Hypertension of the Newborn. Korean J Pediatr. 2004 Nov;47(11):1220-1224. • Cho YY, Oh HJ, Han SJ, Sung SH, Bae GH, Shon HS, Yoon HD : A Case of Fetal Alcohol Syndrome with Secondary Amenorrhea. J Korean Soc Endocrinol. 2005 Oct;20(5):524-530. • Cho YK, Chang SD, Kim YC, Lee SY. A Case of Fetal Alcohol Syndrome with Esotropia. J Korean Ophthalmol Soc. 2005 Oct;46(10):1756-1759. • Bhang SY, Ahn DH, Lee YJ, An HY, Ahn JH The First Report of Fetal Alcohol Effect in a 12 Year-Old Child in Korea. Psychiatry Invest 2009;6:50-53. 8
  • 9. How could we start ? Outreach to institution for disabled kid Drinking Work with disabled kid Mother registration system Reliable maternal drinking Difficult to getting information information about Barrier to getting maternal drinking information Easy to examination Long term follow up to about FASD with Kids confirm FASD Clinical based referral model Disabled Inter referral system Kids (OB - PD - NP)
  • 10.
  • 11. Exploratory visit & Pilot study • Un experienced specialist • No social awareness • No data to support the need for research • Social stigma and denial Develop pilot project Work with experienced specialist Visit various setting of institution (High risk group) Trial of diagnosis of FASD kids
  • 12. Process Selection of Institution Institution for MR kid, Orphanage, Special school,,, Screening Height or Weight is Under 10 percentile Diagnosis Dysmorphologic examination
  • 13. Inclusion criteria for diagnostic examination • Age – from 5 to 16 yrs • Kids with Mental Retardation • Exclusion of Kids with Cerebral palsy, Down syndrome, and so forth… • Also, behavioral referrals were solicited from teachers.
  • 14. Visiting Schedule Aug 2nd (Mon) Aug 3rd (Tue) Aug 4th(Wed) Aug 5th(Thur) 9 Ins for MR kid Orphanage Break Ins for MR 10 7:30 departure 8:30 departure 8:00 departure Uijeongbu city 11 Seoul(south) Seoul(north) (north) 12 1 pm finish 12:00 finish transfer & hospi 1 transfer transfer transfer tal visit 2 Orphanage Ins for MR kid Special edu. FASD workship 3 2:30 start Day care Hotel 4 Uijeongbu city(north) 5 Ins for MR 6 5:30 finish Seoul(north)
  • 15. Overall Rate Total After Likely to be Institution Deffered Subject screening Confirmed Institution 4 site N=21 N=11 for Kid with 142 N=50 42% 22% MR 2 site N=15 N=2 Orphanage N=34 137 44% 6% Special 1 site N=4 N=0 N=9 Education 28 44% 0% N=40 N=13 307 N=93 Total 43% 14%
  • 16. Prevalence of Fetal Alcohol Syndrome (FAS) and Partial Fetal Alcohol Syndrome (pFAS) in Students Entering Sch ool via Active Case Ascertainment FAS Location Socioeconomic Population (FAS+pFAS) (Reference Year) Status Rate per 1000 United States: Mid- 75% white; 25% Middle SES with full 6 – 11 Western Medium American Indian, range from Low to (14 – 25) Size City (May et al. African American Upper 2009) and Asian Italy; Lazio Region Predominantly white Middle SES 4–9 (May et al. 2007) (27 – 55) South Africa: 85% Mixed Ancestry Low Middle SES 51 – 67 Western Cape (“Coloured”), 15% White: Middle – (68 – 90) (2007) European White Upper SES South Africa: 64% Mixed Ancestry Low & Middle SES 6 – 11 Northern Cape 36% Native Black (14 – 25) (Urban et al. 2008)
  • 17. Rate of facial dysmorphology Thin Short Rail road Smooth Hockey stick Clino- Campo- category Vermilion Palperbral track Philtrum crease dactyly dactyly border fissure Institution N=11 N=15 N=17 N=11 N=5 N=7 N=4 for MR 21% 32% 37% 21% 10% 15% 8% N=3 N=2 N=3 N=10 N=10 N=3 N=2 Orphanage 9% 8% 9% 30% 29% 9% 6% Special N=0 N=0 N=2 N=1 N=2 N=1 N=0 school 0% 0% 40% 14% 28% 14% 0% N=13 N=18 N=29 N=22 N=10 N=11 N=6 Total 15% 20% 33% 25% 10% 13% 7%
  • 21. FAS case with thin vermilion border-1
  • 22. FAS case with thin vermilion border-2
  • 23. Future Direction Clinic base case control studies Surveillance system Active case ascertainment approaches