data collection process for the health component (2008) of the québec longitudinal study of child...
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Data Collection Process for the Data Collection Process for the Health Component (2008) of the Health Component (2008) of the
Québec Longitudinal Study of Child Québec Longitudinal Study of Child Development (QLSCD)Development (QLSCD)
Bertrand Perron, PhDQLSCD coordinatorNancy Illick, MSc
Research officer
Direction des statistiques sociales, démographiques et de santé (DSSDS)
Institut de la statistique du Québec (ISQ)
24th International Methodology Symposium, Statistics CanadaData Collection: Challenges, Achievements and New
Directions Ottawa – October 29, 2008
OutlineOutline
1.1. Description of QLSCDDescription of QLSCD
2.2. The Heath Component of The Heath Component of QLSCDQLSCD
3.3. Steps in the collection processSteps in the collection process
4.4. Collecting data for the Health Collecting data for the Health ComponentComponent
Part 1Part 1Description of QLSCDDescription of QLSCD
Québec Longitudinal Study of Child Québec Longitudinal Study of Child DevelopmentDevelopment QLSCD’s objectives A bio-psychosocial approach The samples Collection programs Phase 2 of the collection process (2003-
2010)
QLSCD’s Objectives
Identify the factors that, when present in early childhood, contribute to the social adaptation and academic achievement of children in Quebec
Gain a clearer understanding of the role played by selected government programs (child care services, parental leave, health promotion, etc.) and guide the development of future programs
A Bio-psychosocial Approach
Child
New wife
New husban
d
Step-siblings
Bio. mother (PMK)
Siblings
Resident bio. father
Non-resident
bio. father
Non-resident
bio. mother
The Samples Pre-test: “In 2001 ... I was 5 years old”
Initial N in Pre-test 1 (1996) = 572 families (Montréal and Québec City)
449 at GRIP-UdeM and 123 at ISQ (95 contacted for Pre-test 11)
Core survey: “I am, I’ll be” Representative sample of all children (single
births, except extremely premature) born to women living in Quebec in 1997-1998 (excluding health regions 10, 17 and 18)
Initial sample (1998) = 2,120 families Sample size after 2006 collection = 1,531 (1,974
contacted)
Collection ProgramsYearYear Pre-testsPre-tests Regular surveysRegular surveys Special surveysSpecial surveys
19961996 P1 (5 months)P1 (5 months)
19971997 P2 (17 months)P2 (17 months)
19981998 P3 (29 months)P3 (29 months) E1 (5 months)E1 (5 months)
19991999 P4 (41 months)P4 (41 months) E2 (17 months)E2 (17 months)
20002000 E3 (29 months)E3 (29 months)
20012001 P6 (5 years)P6 (5 years) E4 (41 months)E4 (41 months)
20022002 P7 (6 years)P7 (6 years) E5 (4 years)E5 (4 years) NUTRITIONNUTRITION
20032003 E6 (5 years)E6 (5 years) CHILD CARE CHILD CARE SERVICESSERVICES
20042004 P9 (8 years)P9 (8 years) E7 (6 years)E7 (6 years) PSYCHOMOTILITYPSYCHOMOTILITY
20052005 E8 (7 years)E8 (7 years)
20062006 P10 (10 years)P10 (10 years) E9 (8 years)E9 (8 years) PSYCHOMOTILITYPSYCHOMOTILITY
20072007 P11 (10-11 years) + P11 (10-11 years) + HEALTHHEALTH
20082008 P12-13 (12 years)P12-13 (12 years) E11 (10 years)E11 (10 years) HEALTHHEALTH
20092009 P14 (13 years)P14 (13 years)
20102010 E13 (12 years)E13 (12 years)
Collection for the 2008 Cycle (E11)
Parents:
Personal interview (60 min.) 1-2 self-administered paper questionnaires (30 min.)
E11
SCHOOLBIP
Child: 2-5 aptitude tests Questionnaire (interviewer) (75 min.)
Teacher:
Questionnaire (45 min.)
E11E11
HOMEBIP-QHS
Health Component
Parents and children(150 min.)
E11
BIP: Bureau des Intervieweurs Professionnels QHS: Quality Health Services Ltd.
Part 2Part 2The Health Component of The Health Component of
QLSCDQLSCD Prime moversPrime movers Overview of health data collectionOverview of health data collection 2008 collection period2008 collection period Collection instrumentsCollection instruments Results of the Pre-testResults of the Pre-test
Prime Movers of the Health Prime Movers of the Health ComponentComponent
Université de MontréalUniversité de Montréal Interdisciplinary Health Research Group (GRIS) Interdisciplinary Health Research Group (GRIS)
L. Séguin, MD, MPH; G. Paradis, MD, MSc; M. Lambert, L. Séguin, MD, MPH; G. Paradis, MD, MSc; M. Lambert, MD MD
Research Unit on Children’s Psychosocial Research Unit on Children’s Psychosocial Maladjustment (GRIP)Maladjustment (GRIP)
R. E. Tremblay, PhD; M. Boivin, PhD R. E. Tremblay, PhD; M. Boivin, PhD
FundingFunding CIHR (CIHR (CanadianCanadian Institutes of Health Research)Institutes of Health Research) FRSQ (FRSQ (Fonds de la recherche en santé du Fonds de la recherche en santé du
Québec)Québec) Project manager: Institut de la Statistique Project manager: Institut de la Statistique
du Québec (ISQ)du Québec (ISQ)
Overview of Health Data Overview of Health Data CollectionCollection
Research focusesResearch focuses Poverty, stress and cardiovascular disease Poverty, stress and cardiovascular disease
(CVD)(CVD) (GRIS)(GRIS) DNA and behaviour (GRIP)DNA and behaviour (GRIP) Environmental health (GRIS and GRIP)Environmental health (GRIS and GRIP)
Home visitHome visit All regions of QuebecAll regions of Quebec Families contactedFamilies contacted = 1,974= 1,974 March – December 2008March – December 2008
2008 Collection Period2008 Collection Period
January February March April May June July August Sept. Oct. Nov. Dec.
Component
Core
Health
7 days / week
Weekends only Weekends only Summer
Collection InstrumentsCollection Instruments Self-administered questionnaire for the parent Self-administered questionnaire for the parent (20 (20
minutes)minutes)
Child questionnaire administered by the nurse Child questionnaire administered by the nurse (20 (20 minutes)minutes)
Self-assessment of sexual maturity (Tanner) Self-assessment of sexual maturity (Tanner) (5 minutes)(5 minutes)
Measurement of changes in heart rhythm (Holter) Measurement of changes in heart rhythm (Holter) (continuous)(continuous)
Anthropometric measurements of child Anthropometric measurements of child (20 minutes)(20 minutes)
Blood sample from fasting child Blood sample from fasting child (10 minutes)(10 minutes)
Measurement of child’s blood pressure while seated Measurement of child’s blood pressure while seated (10 minutes)(10 minutes)
Saliva collection for DNA preparation if necessary Saliva collection for DNA preparation if necessary (5 (5 minutes)minutes)
Saliva collection for cortisol measurement Saliva collection for cortisol measurement (4 X 2 minutes)(4 X 2 minutes)
Results of the Pre-testResults of the Pre-test May – August 2007May – August 2007 53 families seen; blood samples taken from 39 of them53 families seen; blood samples taken from 39 of them
n %
No. of families contacted in all 96
No. of families seen for Core Component (asked to take part in Health Component) 63
(63/96) 65%
No. of families who agreed to do Health Component 55
(55/63) 87%
No. of families who completed Health Component 53
(53/63) 84%
Blood sample agreed to 46(46/55) 84%
Blood sample taken 39(39/53) 74%
Saliva (Oragene) taken for DNA (if blood not taken) 14
(14/53) 26%
Part 3Part 3Steps in the Collection Steps in the Collection
ProcessProcess
Step 1: Recruiting participantsStep 1: Recruiting participants Step 2: Making appointmentsStep 2: Making appointments Step 3: Visiting the familyStep 3: Visiting the family Step 4: Forwarding samples and Step 4: Forwarding samples and
datadata
Step 1: Step 1: Recruiting ParticipantsRecruiting Participants
1.1. ISQISQ
2.2. ISQ ISQ
3.3. BIP BIP
4.4. BIPBIP
5.5. BIPBIP
Through administrative data from MELS
Core Component
Health data collection
Verbal consent
Step 2: Step 2: Making AppointmentsMaking Appointments
Calls to make appointments (BIP)Calls to make appointments (BIP) BIP informs the nursing company (QHS) BIP informs the nursing company (QHS)
of the appointmentsof the appointments QHS assigns appointments to available QHS assigns appointments to available
nursesnurses The nurses confirm the appointment The nurses confirm the appointment
with the family two days in advance with the family two days in advance (reminder that the child must be (reminder that the child must be fasting)fasting)
Step 3: Step 3: Visiting the Family Visiting the Family (2.5 (2.5
hours)hours) Obtain written consent (20 min)Obtain written consent (20 min) Collection activities:Collection activities:
Apply anaesthetic cream to child Apply anaesthetic cream to child Attach Holter to child (10 min)Attach Holter to child (10 min) Take child’s anthropometric measurements (20 min)Take child’s anthropometric measurements (20 min) Collect blood sample from fastingCollect blood sample from fasting child (10 min)child (10 min) Give child breakfast (30 min)Give child breakfast (30 min) Nurse prepares blood samples (30 min)Nurse prepares blood samples (30 min) Nurse administers child questionnaire (20 min)Nurse administers child questionnaire (20 min) Self-assessment of sexual maturity (5 min)Self-assessment of sexual maturity (5 min) Mother completes self-administered questionnaire for the Mother completes self-administered questionnaire for the
parent (20 min)parent (20 min) Measure child’s blood pressure while seated (10 min)Measure child’s blood pressure while seated (10 min) Collect saliva for DNA preparation if necessary (5 min) Collect saliva for DNA preparation if necessary (5 min)
After collection activities:After collection activities: Give out rewards and provide resultsGive out rewards and provide results Week following the home visit: Mother and child collect Week following the home visit: Mother and child collect
saliva samplessaliva samples
Adobe Acrobat 7.0 Document
Step 4: Step 4: Forwarding Specimens and Forwarding Specimens and
DataData
Holter data Laval H Holter analysis
McGill U Epi analysis
BIPData input
Douglas H DNA analysis
26 regionalhospitals
Ste-Justine H
CVD analysis
Biological samples
Questionnaires Université de Montréal
Track samples
Douglas H Cortisol analysis
Salivary cortisol
LNSPQLead analysis
ISQ
Send results to respondents
BIP
Part 4Part 4Collecting the Data for the Collecting the Data for the
Health ComponentHealth Component Difficulties in implementing the Difficulties in implementing the
initial collection methodinitial collection method Changes made in the collection Changes made in the collection
methodmethod Preliminary resultsPreliminary results Participation and attritionParticipation and attrition
Difficulties in Implementing Difficulties in Implementing the Initial Collection Methodthe Initial Collection Method
Limited availability of nursesLimited availability of nurses Difficult to recruit more nurses Difficult to recruit more nurses
(complex project, a lot of travel, etc.)(complex project, a lot of travel, etc.) Problems with communications between Problems with communications between
principalsprincipals Constraint associated with availability Constraint associated with availability
of materials ($)of materials ($) Time constraintTime constraint
Changes Made in the Changes Made in the Collection Method Along the Collection Method Along the
WayWay Appointments made by the nursesAppointments made by the nurses Université de Montréal played a role in Université de Montréal played a role in
recruiting nursesrecruiting nurses Cooperation with other regional hospitals Cooperation with other regional hospitals
based on nurses’ area of residencebased on nurses’ area of residence Communications between firms kept to a Communications between firms kept to a
minimumminimum Additional materials brought inAdditional materials brought in Collection period extendedCollection period extended
Preliminary ResultsPreliminary Results
Results for Health Component as of Oct. 1, Results for Health Component as of Oct. 1, 20082008
Estimate of final Estimate of final nn n
Estimated final n %
No. of families contacted overall 1733
No. of families who completed Core Component 1394
No. of families who agreed to do Health Component 1046
1046/1733 53%
No. of families who completed Health Component 655 998
655/998 66%
Blood test agreed to 836836/1046
80%
Blood test taken / Blood test agreed to 711711/836
85%
Participation and Participation and AttritionAttrition
Favourable factors accounting for Favourable factors accounting for participationparticipation
““Home” laboratory Home” laboratory A subject of current interest: healthA subject of current interest: health Return of lipid profile resultsReturn of lipid profile results Financial compensation ($40)Financial compensation ($40)
Unfavourable factors accounting for attritionUnfavourable factors accounting for attrition Length of visit (2.5 hours)Length of visit (2.5 hours) Intrusive nature of measurementsIntrusive nature of measurements Visit occurs only a short time after the Core Visit occurs only a short time after the Core
ComponentComponent Families asked to participate for the last 10 yearsFamilies asked to participate for the last 10 years
ConclusionConclusion
Suggestions for future collection of Suggestions for future collection of health datahealth data Manage the nurses internallyManage the nurses internally Limit the number of principals involved Limit the number of principals involved
in the processin the process Have nurses make the appointmentsHave nurses make the appointments Continue giving families their resultsContinue giving families their results