1. The Design and Implementation of a Three-Phase Study of the Developmental Trajectories of At-Risk Children Dr. Hillel Goelman, Dr. Anne Synnes, Dr. Jill Houbé, Dr. Anne Klassen, Mari Pighini, Ph.D Student, Dr Sarka Lisonkova, The Human Early Learning Partnership The University of British Columbia Dana Brynelsen, Provincial Advisor. The Infant Development Program of British Columbia HELP Seminar July 5, 2007 Funded by the Social Development Partnerships Program, Social Development Canada

2. Background Children treated in Neonatal Intensive Care Units (NICUS) are at risk for developmental problems because of: anomalies they are born with complications of treatments required in the newborn period effects of their newborn condition on their family/ environment and/or concomitant risk factors

3. To date, there is a dearth of:  longitudinal research from birth to school years  interdisciplinary research to provide the multiple perspectives needed to fully understand the child’s development across various domains of development  “ecologically valid” research on the social determinants of optimal child development

4. Objectives of the study To better understand the health and developmental trajectories of a population of at-risk children from birth to age 9 To better understand the social determinants that impact on the developmental health trajectories of a population of at-risk children from birth to age 9 and To conduct an interdisciplinary study of a population of at-risk infants that draws on the strengths and complementary perspectives of psychology, neonatology, and developmental pediatrics and population health

5. Research Questions: In comparing a cohort of at-risk children admitted to Level II/III NICUs with a matched comparison group of non-risk children: 1)What differences are there in the medical histories of the two cohorts? 2)What differences are there in the educational progress of the two cohorts in their elementary school years in such areas as: a)Receiving learning assistance services b)Scores on standardized outcome measures

6. Phase 1 To identify at-risk infants born in BC in 1996/7 admitted to the BC Level II/III NICUs (Cohort 1) and a matched comparison group (Cohort 2) of non-risk infants born in BC in 1996/7 through the BC Linked Health Data Base (BCLHD).

7. What data on these children are there in the BCHLD? How many at-risk children were admitted to the Level II/III Neonatal Intensive Care Units in B.C., the reasons for their referral, and the history of their medical treatments, intervention and assessments data on medical services that have been billed to and paid for by provincial health insurance Fields include visits to physicians (e.g., chronic illnesses), hospitalizations and surgeries and Interventions, therapies (e.g., physiotherapy, speech and language therapy)

10. Percentage of non-NICU children vs. NICU Level II and NICU Level III children with more than 2 hospital admissions in the first year of life

11. Percentage of non-NICU children vs. NICU Level II and NICU Level III children with more than 2 hospital admissions in the 2 nd year of life

12. Percentage of non-NICU children vs. NICU Level II and NICU Level III children with more than 2 hospital admissions in the 3rd year of life

13. Phase 2 To link the health information on Cohort 1 and Cohort 2 obtained through the BCHLD in Phase I with their respective educational outcome measures in Grade 4 through Edudata Canada. Edudata Canada is a database which includes information on children in the public school system starting when the child enters kindergarten, usually at age 5.

14. Linking the databases: Edudata Canada Edudata Canada includes information on the child’s developmental and academic progress, as well as demographics information, for example: In Phase 2, these children’s anonymized Personal Health Numbers (PHNs) will be linked with their Permanent Education Numbers (PENs). This will enable us to obtain and compare anonymous and confidential records of educational achievement and status (for example, standardized test scores i.e., FSA scores; special education designation and school support services, i.e., the student being assigned with a special support worker, among others

15. The BC Linked Health Database The Edudata Database The crosswalk linking the two data bases

16. What are some answers we can find from BCHLD /Edudata Canada crosswalk? The crosswalk will enable us to: Link neonatal medical information on a given child with information on that child’s school performance on standardized assessment measures in Grade 4, i.e., the Foundations Skills Assessment or FSA. Inferential and predictive statistical techniques will be used to identify the relative weight contributed by different social, economic, health and developmental variables to the school outcome variables from Edudata Canada

17. Phase 3 To identify and to link health information on specific sub-groups of at-risk children in BC who were admitted to the BC Level II/III NICUs and matched comparison groups.

18. Research Team Members HELP/CHILD Dr Hillel Goelman Dr Clyde Hertzman Barry Forer Keely Kinar Mari Pighini Dr. William Warburton British Columbia Health Centre for Women and Children Dr Anne Synnes Dr Jill Houbé Dr Anne Klassen Herb WP Chan Dr Sarka Lisonkova edudataCanada Dr. Jennifer Lloyd Centre for Health Services Policies and Research (CHSPR) Denise Morettin Infant Development Progams of BC Dana Brynelsen

19. Thank You!