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 Québec Longitudinal Study of Child Development (QLSCD) Child Development (QLSCD) Bertrand Perron, PhD QLSCD coordinator Nancy Illick, MSc Research officer Direction des statistiques sociales, démographiques et de santé (DSSDS) Institut de la statistique du Québec (ISQ) 24 th International Methodology Symposium, Statistics Canada Data Collection: Challenges, Achievements and New Directions Ottawa – October 29, 2008

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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

Québec Longitudinal Study of Child DevelopmentQuébec Longitudinal Study of Child Development

Thank you for Thank you for your attention!your attention!

http://www.jesuisjeserai.stat.gouv.qc.ca