Title: An Interdisciplinary Study of the Developmental Trajectories of AtRisk Children
1 An Interdisciplinary 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 Edudata
Forum May 5, 2006 Morris J Wosk Centre for
Dialogue, Vancouver BC
2 The Design and Implementation of An
Interdisciplinary 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 Edudata
Forum May 5, 2006 Morris J Wosk Centre for
Dialogue, Vancouver BC
3Definition of At-Risk in this study
- At risk children are those, who as a result of
medical, biological or environmental factors are
more likely than typical children to have
developmental delays and school difficulties
4Outline for Todays Presentation
- Background What do we know about the development
at risk children from the research in - Neonatology (Dr. Anne Synnes)
- Early child development (Dr. Hillel Goelman)
- Developmental pediatrics (Dr. Jill Houbé)
- Quality of life studies (Dr. Anne Klassen)
- Rationale for study (Dr. Hillel Goelman)
- Objectives and research questions of the
exploratory study
5Outline for Todays Presentation
- Methods Identifying children and using linked
data bases. - Phase 1 Identifying the children
- Phase 2 Linking the Education and Health
databases - Phase 3 Analyzing the developmental trajectories
of the children - Current status and future directions
6Background
7Neonatal Intensive Care UnitsThe Neonatal
Followup ProgramAnne Synnes
8- Level II and III regional neonatal-perinatal
centers (NICUs) in BC provide care for high risk
pregnancies and intensive care for severely ill
infants. - Babies born in BC with extremely low birth weight
(ELBW, under 750 grams), are followed by the
provincial Neonatal Follow-up Programme (NFUP) at
the Womens and Childrens Health Centre of BC
9Research in neonatology
- 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
10The Early Years Early Child DevelopmentHillel
Goelman
11Research in Early Child Development
- The early years are critical for childrens
physical, cognitive, language, social and
emotional development. - Pre-term babies admitted in the NICUs are at risk
for neurodevelopmental, behavioral and social
dysfunction
12- Some studies following up at-risk babies and
children have shown higher rates of - learning disabilities and
- behavioural difficulties
- Early identification of at-risk children can have
a significant positive effects upon the
childrens development because early intervention
services help diminish some sequelae of at-risk
factors such as preterm/low birthweight birth
13 The Early Years Research in Developmental
Paediatrics Jill Houbé
14- There are few population-based studies of preterm
infant outcomes that permit interpretation of the
impact of environmental factors/multiple
determinants of long-term outcomes (family,
community and health policy) - Limited number of population based longitudinal
research on at-risk children who are NICU
survivors is also due to many methodological
challenges.
15- Neonatal Follow-Up Clinics provide
multidisciplinary diagnostic services for former
preterm infants - Community intervention services provide on-going
support for children and families - Almost all intervention services terminate upon
school entry - Education policy, budgets and staffing prohibit
on-going provision of remedial services to all
but the most disabled school-age former preterm
infants
16- Quality of Life for at-risk infants, toddlers and
preschoolers - Anne Klassen
17Infants born into NICUs and their caregivers a
study of the relationship between their health
related quality of life, NICU practices and
outcomes, and post-NICU health care utilization
- Investigators Shoo Lee, Anne Klassen, Parminder
Raina, Morris Barer - Operating Grant Hospital for Sick Children
Foundation (Toronto) - Postdoctoral Funding Killiam CIHR
18Background
- There are an increasing number of generic
multidimensional questionnaires (i.e., Health
Related Quality of Life questionnaires) that can
be used to measure child health comprehensively,
but these have not been widely used in NICU
follow-up studies.
19Background
- Definitions of HRQL vary, but most view HRQL as
being - Subjective -- assessed from the patients
perspective whenever possible - Multidimensional -- e.g., the WHOs definition of
health, which is a state of complete physical,
mental, and social well-being and not merely the
absence of disease
20Modified WHO Definition for Children, Bradlyn et.
al 1996
- QOL includes, but is not limited to the social,
physical and emotional functioning of the child
and adolescent, and when indicated, his or her
family, and it must be sensitive to the changes
that occur throughout development.
21Preschool Measures of HRQL
- Fekkes et al. (The Netherlands) -- TAPQOL, a 12
domain generic pre-school measure of health
status, and used this instrument in a study of
preterm infants. - Varni et al. (USA) -- Pediatric Quality of Life
Inventory, which measures physical, mental and
social health in children and adolescents aged 2
to 18 years. - Landgraf (USA) -- Infant and Toddler Quality of
Life Questionnaire, which measures 8 child and 5
parental domains for children aged 2 months to 5. - Saigal (Canada) -- Health Status Classification
System Preschool Version, which measures 12
health domains.
22Aims
- To validate the new ITQOL questionnaire
- To measure HRQL and HS of children admitted to
NICUs in BC - To measure the HRQL of the informal family
caregivers - To link HRQL and HS data with the CNN and BCLHD
to examine the independent and interactive
effects of different risk factors on long-term
health outcomes
23Method
- Retrospective cross-sectional survey of BC-born
cohort included in the Canadian Neonatal Network
(CNN) Study - CNN study included 19,507 infants admitted to 17
NICUs from Jan 96 to Oct 97. Data were
collected to look at variation in practice and
outcome
24Sample
- A total of 1140 of 2221 surviving infants
admitted for gt24 hrs to the 3 tertiary care NICUs
in BC (March 1996 to June 1997) - Comparison group of 393 of 718 healthy full-term
children recruited from 2 of these hospitals
25Method
- A questionnaire booklet and consent letter was
sent to the mother as child turned 3.5 years. - Data for consenting families linked with hospital
birth record data from the CNN database and with
BCLHD.
26Infant and Toddler Quality of Life
Questionnaire
27Health Status Classification System Preschool
Version
28Measures
- Child Behavior Checklist 1.55 (CBCL)
- Externalizing symptoms
- Internalizing symptoms
- Total problem score
29Results
- Overall response rate was 55
- Response rate for located families was 67.1.
- 72 provided consent to link questionnaire and
health data
30(No Transcript)
31Findings
- The ITQOL questionnaire demonstrated acceptable
reliability and construct validity in a sample of
children requiring NICU care and a sample of
healthy children.
32(No Transcript)
33Findings
- NICU children had poorer reported HRQL and HS in
a range of domains, and more behaviour problems
on the CBCL, compared with healthy children. - Poorer HRQL and HS were reported for infants who
were born lt27 weeks gestation and for children
who experienced gt 1 major morbidity during their
NICU stay.
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35Findings
- Psychosocial health of NICU parents did not
differ from parents of healthy children - Predictor of lower psychosocial health of parents
included - parental age
- poorer family function
- higher caregiver strain
- More child internalizing and externalizing
behavioural symptoms
36Klassen A, Lee SK, Barer M, Raina P. (2005)
Linking Survey Data with a Administrative Health
Information Characteristics Associated with
Consent from a NICU Follow-up Study. Canadian
Journal of Public Health 2005 96 (2)151-154.
37- Families of healthy children were as likely to
provide consent as families of NICU children. - Higher rates of consent were associated with
- being the biological parent
- not requiring survey reminders
- involvement in a parent support group
- not working full-time
- having less healthy children
- multiple births
- higher income
38Future Publications
- Schiariti V, et al. Caregiver-Reported Health
Outcomes of preschool Children Born at 28 to 32
Weeks Gestation - Houbé J, et al. Can neonatal severity of illness
scores predict health status and health services
use at 42 months of age? - Houbé J, et al. Influences on health care
utilization in a population-based sample of NICU
graduates at 42 months of age - Houbé J et al. Validity of Maternal Report of
Health Care Use for Former Preterm Children at 42
Months of Age
39Rationale for the proposed study on the
Developmental Trajectories of At-risk Children
Hillel Goelman
40To 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 childs development across various domains of
development - ecologically valid research on the social
determinants of optimal child development
41The challenges to studying the developmental
trajectories of these children
- There is no universal system (such as Health or
Education) for monitoring and documenting
childrens development from the ages of 0 to 5. -
42- The data that do exist on these children in BC
are stored in (at least) three different
databases and in different formats - The BC Health Linked Database (BCHLD)
- Neonatal Follow-up Programme (NFUP) at BC
Childrens Hospital - Edudata Canada
43Objectives and Research Questions
44Objectives of the study
- To better understand the health and developmental
trajectories of at-risk children from birth to
age 9 - To better understand the social determinants that
impact on the developmental health trajectories
of at-risk children from birth to age 9 and - To conduct an interdisciplinary study of at-risk
infants that draws on the strengths and
complementary perspectives of psychology,
neonatology, and developmental pediatrics and
population health
45Research QuestionsIn comparing a cohort of
at-risk children admitted to Level II/III NICUs
with a matched comparison group of non-risk
children
- What differences are there in the medical
histories of the two cohorts? - What differences are there in the educational
progress of the two cohorts in their elementary
school years in such areas as - Receiving learning assistance services
- Scores on standardized outcome measures
46Methods
47Phase 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).
48Phase 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, e.g.
FSA scores.
49Phase 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.
50(No Transcript)
51Phase 1 Finding the Children!
- Identify at-risk children (and their PHNs) in the
1996/7 birth cohort who were admitted to the
three BC Level II/III NICUs. (Cohort 1) - (Note The researchers will receive data with
encrypted study numbers assigned for cohorts 1
and 2 with no personal identifiers.)
52Phase 1 Finding the Children!
- Identify a matched comparison group of non-risk
children (and their PHNs) based on DOB, sex and
(three-digit) home postal code (Cohort 2) - (Note The researchers will receive data with
encrypted study numbers assigned for cohorts 1
and 2 with no personal identifiers.)
53Phase 1 Finding the Children!
- Conduct descriptive analyses for the case (Cohort
1) and comparison cohorts (Cohort 2) and
subgroups , e.g. by gestational age and
birth-weight groups
54Phase 1 Finding the data on the children in the
British Columbia Health Linked Database
- There are many different files in the BCHLD with
coded information, for example, - MSP Registration, Premium Billing (R PB),
Hospital Separation Files - In this study, we are particularly interested in
the - Vital Statistics Clinical Data, that include
information on pregnancy, gestational age, birth
weight, infant being singleton/twins, and number
of live births to mother and marital status of
mother at the time of giving birth.
55What data on these children are there in the
BCHLD?
- The BC Linked Health Database (BCLHD) includes
data on medical services that have been billed to
and paid for by provincial health insurance - Fields include date of birth, sex, admittance to
hospital and to specific units NICUs,
hospitalization, length of stay, diagnosis,
services provided, professionals involved, among
many others
56- From these data we can learn
- 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
57What are some data we can find in the BCHLD files?
- What is the health history of each child?
- Doctors visits, illnesses e.g chronic ashtma?
- Hospitalizations surgery eg- cleft palate?
(When? For how long?) - Interventions, therapies eg, physiotherapy,
speech and language therapy
58Phase 2 Linking Health and Educational
Information
- In Phase 2, these childrens anonymized Personal
Health Numbers (PHNs) will be linked with their
Permanent Education Numbers (PENs) so as 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
59Linking the databases 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. - Edudata Canada includes information on the
childs developmental and academic progress, as
well as demographics information, for example
60What relevant data are there for this study in
Edudata Canada?
- The Early Development Instrument (EDI)
- A rating instrument completed by BCs
kindergarten teachers - A tool for measuring children's readiness (in 5
developmental domains) to participate in and
benefit from school activities (ECD mapping
project)
61What relevant data are there for this study in
Edudata Canada?
- The Student Level Data Collection (SLDC)
- Information on all BC students attending
public/independent schools - Includes DOB, gender, grade level, primary
language spoken in the home, the school they are
attending and the program and number of courses
they are enrolled , and
62What relevant data are there for this study in
Edudata Canada?
- The Foundation Skills Assessment (FSA)
- Standardized tests in three subject areas
Reading, Writing and Numeracy - Measures critical skills embedded in BCs
curriculum (language and mathematics prescribed
outcomes) for students in Grades 4, 7, and 10 - among other databases
63What 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 childs school
performance on standardized assessment measures
in Grade 4, i.e., the Foundations Skills
Assessment or FSA.
64Phase 2 Linking health and educational
information with socio-demographic information
- Collect socio-demographic data in the communities
in which the children live. - In addition, using social geography mapping
techniques, develop a better understanding of the
interplay between child development in the
multiple contexts of family, neighborhood,
community and government health and education
policy, e.g., the ECD Mapping Project
65Proportion of Students Vulnerable on the Language
and Cognitive Development Subscale of the Early
Development Instrument, 2000-2003
66Phase 2 Initial descriptive data analyses
- Descriptive analyses for the matched case (Cohort
1) and comparison cohorts (Cohort 2) with linked
PHNs and PENs to obtain frequency counts for the
children who can now be followed up in the school
system (Kindergarten through Grade 4)
67Phase 2 Inferential and predictive data analyses
- Inferential and predictive statistical techniques
will be used to identify the relative weight
contributed by different health and developmental
variables to the school outcome variables from
Edudata Canada
68Phase 3 Studying Specific sub-groups in the NICU
Cohort
- To identify and to link health, developmental and
educational information on children with
extremely low birthweight (e. g. followed by the
Neonatal Follow Up Programme), and on children
with identified special needs (e. g. followed up
by IDP, AIDP and SCDP) and other specific
subgroups of children - To identify and to link health, developmental and
educational information on at-risk infants from
1997 to the present in BC, admitted to the BC
Level II/III NICUs with their educational
performance and outcomes in Grade 4
69Current status and future directions
70Population Health and Learning Observatory
- One-stop place for data crosswalk
- Advantage Researchers do not have to depend on
probabilistic linkage of data (see PHLO chart). - Crosswalk accuracy 99
71PHLO Data Linkage between BCHLD and Edudata
Canada
PHLO Crosswalk
BCLHD Health data
Edudata Education data
PHN
PEN
4
The Population Health Learning Observatory
facilitates applying for data jointly BC
Ministry of Education ( through Edudata Canada)
and BC Ministry of Health (through BCHLD)
72Who is the Population Health Learning
Observatory?(K Kinar, HELP, Fall 2004)
CYDTRU
PHLO
EDUDATA
CHSPR
73Next step What differences make a difference?
- The challenge until now, though, is that these
programs often do not record childrens PHNs and
so linking them to the NICU, BCLHD and Edudata
databases is very difficult. - Current developments The KIDS-LINK database
Project
74Next step What differences make a difference?
- Tracking the children The NICU Study (Flowchart)
- Listening to parents voices The IDP Case
Studies - Linking information from preschool programs
- In BC there are a number of outstanding early
intervention programs. - For example
75 The Infant Development Programs of BC Early
intervention/ Aboriginal I.D.P. Preschool Suppo
rted Child Development Program Programs Alan
Cashmore Centre BC Centre for
Ability
76Strategies to Improve School Readiness
Trajectories (source Halfon, 2006)
Family Discord Family stressors?
Social-emotional, Physical Cognitive, Language
function
Lack of health services Family chronic health
conditions? Genetic predispositions?
Poverty Parents SES? New immigrant family?
Lower trajectory With diminished function
Following up children (and their families) from
birth to school
77Whats in the databases?
- BC Linked Health Database (BCLHD)
- http//www.chspr.ubc.ca/Bclhd/codetables/datainbcl
hd.htm - edudataCanada
- http//www.edudata.educ.ubc.ca/
- Populations Health and Learning Observatory
(PHLO)
78References
- Goelman , H, Brynelsen, D, Pighini, MJ Kysela,
GM (in press). The infant development programs
early assessment and early intervention model in
British Columbia. In M. Guralnick (Ed.), A
Developmental Systems Approach to Early
Intervention National and International
Perspectives. Baltimore Paul H. Brookes - Klassen, AF, Landgraf, JM , Lee, SK , Barer, M,
Raina, P, Chan, H WP, Matthew, D, - Brabyn, D. (2003) Health related quality of life
in 3 and 4 year old children and their parents
Preliminary findings about a new questionnaire.
Health and Quality of Life Outcomes, 181.
Retrieved October 26, 2004 from
http//www.hqlo.com/content/pdf/1477-7525-1-81.pdf
- Synnes AR, Ling EWY, Whitfield MF, MacKinnon M,
Lopes L, Wong G, Effer SB (1994) Perinatal
outcomes of a large cohort of extremely low
gestational age infant (23-28 completed weeks).
Journal of Pediatrics, 125952-60 - Whitfield MF, Eckstein Grunau RV, Holsti L.
(1997). Extreme premature ( 800 g)
schoolchildren Multiple areas of hidden
disability. Archives of Disease in Childhood
77F85-90
79Research Team Members
- HELP/CHILD
- Dr Hillel Goelman
- Dr Clyde Hertzman
- Barry Forer
- Keely Kinar
- Mari Pighini
- William Warburton
- British Columbia Health Centre for Women and
Children - Dr Anne Synnes
- Dr Jill Houbé
- Dr Anne Klassen
- Herb WP Chan
- edudataCanada
- Jennifer Lloyd
- Centre for Health Services Policies and Research
(CHSPR) - Denise Morettin
80Thank You!