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FASD at RJCHC

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Summary of activities related to FASD at the Ron Joyce Children's Health Centre, Hamilton, ON, Canada presented at: FASD - Achieving New Heights Together in Burlington, ON, Canada on March 22, 2019.

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FASD at RJCHC

  1. 1. FASD at RJCHC Olaf Kraus de Camargo Twitter: @DevPeds
  2. 2. “There is no place in Hamilton to get a diagnosis of FASD”
  3. 3. Developmental Paediatrics • “Developmental Pediatrics is a branch of medicine and a subspecialty of Pediatrics that focuses on developmental trajectories of children with congenital or acquired disorders and/or individual variations in physical, motor, cognitive, sensory and social-emotional development. Developmental Pediatricians provide highly specialized health care to children of all ages and developmental levels in the context of their families and communities. The discipline also encompasses the treatment of children’s behavioural responses to those challenges. The overall goal is to promote and maintain the developmental and emotional well-being of all children and their families, especially those who are most vulnerable. The subspecialty promotes preventive strategies that minimize the prevalence and impact of disorders of development. Developmental Pediatrics is concerned with both the individual developmental profile and the impact of the children’s psychosocial and cultural milieu on their lives.” http://www.royalcollege.ca
  4. 4. Diagnosis of FAS ICD – International Classification of Diseases (WHO) LD2F.00 Foetal alcohol syndrome • Description: Fetal alcohol syndrome is a malformation syndrome caused by maternal consumption of alcohol during pregnancy. It is characterized by prenatal and/or postnatal growth deficiency (weight and/or height <10th percentile); a unique cluster of minor facial anomalies (short palpebral fissures, flat and smooth philtrum, and thin upper lip) that presents across all ethnic groups, is identifiable at birth, and does not diminish with age. Affected children present severe central nervous system abnormalities including: microcephaly, cognitive and behavioral impairment (intellectual disability, deficit in general cognition, learning and language, executive function, visual-spatial processing, memory, and attention). https://icd.who.int/browse11/l-m/en
  5. 5. Diagnosis of FASD Special considerations: • FASD w/SFF should be referred to clinical genetics Cook, J. L., Green, C. R., Lilley, C. M., Anderson, S. M., Baldwin, M. E., Chudley, A. E., … Network), (Canada Fetal ALcohol Spectrum Disorder Research. (2016). Fetal alcohol spectrum disorder: a guideline for diagnosis across the lifespan. Canadian Medical Association Journal, 188(3), 191–197. https://doi.org/10.1503 /cmaj.141593
  6. 6. Children in Hamilton • Total: approx. 100.000 • Expected Cerebral Palsy (1:1000): 100 • Expected Down Syndrome (1:750): 133 • Expected Autism Spectrum Disorder (1:68): 1.470 • Expected FASD: (?)
  7. 7. FASD in different Populations Lange, S., Burd, L., Popova, S., Rehm, J., Gmel, G., & Probst, C. (2018). Global Prevalence of Fetal Alcohol Spectrum Disorder Among Children and Youth. Obstetrical & Gynecological Survey, 73(4), 189–191. https://doi.org/10.1097/01.ogx.0000532194.88210.00 Children w/FASD in Hamilton: ~2000-3000? Popova, S., Lange, S., Chudley, A. E., Reynolds, J. N., Rehm, J., May, P. A., & Riley, E. P. (2018). World Health Organization International Study on the Prevalence of Fetal Alcohol Spectrum Disorder (FASD). Centre for Addition and Mental Health.
  8. 8. Services at the “Ron Joyce” • All Encounters in 2018 with FAS/FASD in Diagnosis or Problem List • “Encounter” - any contact, attended and missed appointments, including phone calls
  9. 9. Patients with… • CP: 322 (100) • DS: 111 (133) • ASD: 948 (1470) • FASD: 44 (2500) (?)
  10. 10. Referrals in 2015/2016 • FASD? • Hamilton: 15 • Region: 5 • Confirmed Diagnosis: • Hamilton: 5 (33%) • Region: 0 (0%) • ASD? • Hamilton: 300 • Region: 88 • Confirmed Diagnosis: • Hamilton: 133 (44%) • Region: 23 (26%)
  11. 11. Genetics • In 11 of the 44 children a genetic work up was done • 7 had clinical significant findings!
  12. 12. Families • Of the 44 children, only 4 live with at least one biological parent • 60 – 80% of children with FASD live in foster care Wilhoit, Lauren F., David A. Scott, und Brooke A. Simecka. 2017. „Fetal Alcohol Spectrum Disorders: Characteristics, Complications, and Treatment“. Community Mental Health Journal 53(6):711–18.
  13. 13. Toxic Stress • Toxic stress refers to strong, frequent, and/or prolonged activation of the body’s stress- response systems in the absence of the buffering protection of adult sup- port. Major risk factors include extreme poverty, recurrent physical and/or emotional abuse, chronic neglect, severe maternal depression, parental substance abuse, and family violence. • Is associated with “coronary artery disease, chronic pulmonary disease, cancer, alcoholism, depression, and drug abuse, as well as overlapping mental health problems, teen pregnancies and cardiovascular risk factors such as obesity, physical inactivity, and smoking.”
  14. 14. RJCHC Care Teams • Most children were seen by several professionals • Nursing, BT, SW, OT, PT, Psychology, MD, other therapists • Average: 3 (1 - 10)
  15. 15. ASD Encounters in 2018 • Total: 17207 encounters related to 948 patients • Average: 18 encounters • Median: 5 (1 - 399) • Percent of HF (>50): 7%
  16. 16. FASD Encounters in 2018 • Total: 839 encounters related to 44 patients • Average: 19 encounters • Median: 8 (1 - 191) • Percent of HF (>50): 15% (7)
  17. 17. Other Diagnoses 1 - 7 in total Average 4 diagnoses
  18. 18. Medications 0 - 6 concomitantly Average 2 meds
  19. 19. Treatment and Support • Diagnosing the cause of neurodevelopmental problems is important for public health and prevention • Treatment depends on the functional profile of each child, their individual context and the people around them. Hanlon-Dearman, A., Green, C. R., Andrew, G., Leblanc, N., & Cook, J. L. (2015). ANTICIPATORY GUIDANCE FOR CHILDREN AND ADOLESCENTS WITH FETAL ALCOHOL SPECTRUM DISORDER ( FASD ): PRACTICE POINTS FOR PRIMARY HEALTH CARE PROVIDERS. J Popul Ther Clin Pharmacol, 22(1), 27–56.
  20. 20. FASD Statement • Accept children based on limitations in functioning and participation regardless of suspected or confirmed etiology (e.g. FASD, genetic, complex trauma, prematurity, multifactorial) • Focus on a comprehensive & holistic developmental assessment to generate an International Classification of Functioning (ICF) - based diagnostic formulation and recommendations • Communicate findings and recommendations to parents, teachers and clinicians • Focus on assessing function and determining needs rather than determining if a child does or does not qualify for a specific medical diagnosis https://pondaca.files.wordpress.com/2015/11/ponda-network-position-statement-on-fasd-2015.pdf
  21. 21. Summary • FASD is diagnosed and treated by a multi-professional team according to the needs of the child and the family at the RJCHC! • The referral rate is extremely low, indicating a low level of awareness in the community • A high proportion of children with neurodevelopmental disabilities present with genetic abnormalities, which is also the case in FASD • Children with neurodevelopmental disabilities (confirmed FASD or not) need tailored supports according to their needs that can include diverse therapists, support workers and medications.
  22. 22. Staff involved with FASD in 2018 Behaviour Therapists MAHATOO-TARCEA, ELIDA ORPHANACOS, STEPHANIE POOLE, ALLISON SVEC, ADRIANA WYNNE, KELLY D
  23. 23. Staff involved with FASD in 2018 Child Psychiatrists LIPMAN, ELLEN SASSI, ROBERTO Child Youth Worker OOSTERVEEN, AMY
  24. 24. Staff involved with FASD in 2018 Developmental Paediatricians HARMAN, KAREN HOGAN, GILLIAN JOHNSON, KASSIA JEANNETTE KRAUS DE CAMARGO, OLAF MAHONEY, BILL MESTERMAN, RONIT
  25. 25. Staff involved with FASD in 2018 Early Childhood Resource Specialists DRYSDALE, LINDA J TOMALTY-NUSCA, LORI Mental Health Clinician COPELAND, KAREN
  26. 26. Staff involved with FASD in 2018 Nursing LANDRIAULT, BRIGITTE MILLER, JENNIFER SMITH, CINDY
  27. 27. Staff involved with FASD in 2018 Occupational Therapy GAIK, SANDY LEE, LOWANA L MALCHOW, TERRI MORRISON, ANDREA STICKNEY, DANIELLE WARDROPE, BROOKE
  28. 28. Staff involved with FASD in 2018 Parent Therapists GORKA, TRACY KAUFHOLD, CAROLE NYMAN, GERRI
  29. 29. Staff involved with FASD in 2018 Psychologist NG, OLIVIA GRUNBERGER, AVRAHAM Psychometrist APRO, SHELLEY Physiotherapist KAY, BERNETTE ELIZABETH
  30. 30. Staff involved with FASD in 2018 Residents HOWSON-JAN, BETHANY JAFRI, SIDRA KALEEM
  31. 31. Staff involved with FASD in 2018 Speech-Language-Therapist ZUK, CYNTHIA Social Worker LESTER, REBECCA Therapeutic Recreation MCARTHUR, DENISE
  32. 32. Thank you!

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