1. Data Collection Process for the Health Component (2008) of the Québec Longitudinal Study of 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

2. Outline 1. Description of QLSCD 2. The Heath Component of QLSCD 3. Steps in the collection process 4. Collecting data for the Health Component

3. Part 1 Description of QLSCD Québec Longitudinal Study of Child Development Québec Longitudinal Study of Child Development QLSCD’s objectives A bio-psychosocial approach The samples Collection programs Phase 2 of the collection process (2003-2010)

4. 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

5. A Bio-psychosocial Approach Child New wife New husband Step-siblings Bio. mother (PMK) Siblings Resident bio. father Non- resident bio. father Non- resident bio. mother

6. 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)

7. Collection Programs YearPre-tests Regular surveys Special surveys 1996 P1 (5 months) 1997 P2 (17 months) 1998 P3 (29 months) E1 (5 months) 1999 P4 (41 months) E2 (17 months) 2000 E3 (29 months) 2001 P6 (5 years) E4 (41 months) 2002 P7 (6 years) E5 (4 years) NUTRITION 2003 E6 (5 years) CHILD CARE SERVICES 2004 P9 (8 years) E7 (6 years) PSYCHOMOTILITY 2005 E8 (7 years) 2006 P10 (10 years) E9 (8 years) PSYCHOMOTILITY 2007 P11 (10-11 years) + HEALTH 2008 P12-13 (12 years) E11 (10 years) HEALTH 2009 P14 (13 years) 2010 E13 (12 years)

8. Collection for the 2008 Cycle (E11) Parents:  Personal interview (60 min.)  1-2 self-administered paper questionnaires (30 min.) E11 SCHOOL BIP Child:  2-5 aptitude tests  Questionnaire (interviewer) (75 min.) Teacher:  Questionnaire (45 min.) E11 HOME BIP-QHS Health Component Parents and children (150 min.) E11 BIP: Bureau des Intervieweurs Professionnels QHS: Quality Health Services Ltd.

9. Part 2 The Health Component of QLSCD Prime movers Prime movers Overview of health data collection Overview of health data collection 2008 collection period 2008 collection period Collection instruments Collection instruments Results of the Pre-test Results of the Pre-test

10. Prime Movers of the Health Component Université de Montréal Université de Montréal Interdisciplinary Health Research Group (GRIS) Interdisciplinary Health Research Group (GRIS) L. Séguin, MD, MPH; G. Paradis, MD, MSc; M. Lambert, MD L. Séguin, MD, MPH; G. Paradis, MD, MSc; M. Lambert, MD Research Unit on Children’s Psychosocial Maladjustment (GRIP) Research Unit on Children’s Psychosocial Maladjustment (GRIP) R. E. Tremblay, PhD; M. Boivin, PhD R. E. Tremblay, PhD; M. Boivin, PhD Funding Funding CIHR (Canadian Institutes of Health Research) CIHR (Canadian Institutes of Health Research) FRSQ (Fonds de la recherche en santé du Québec) FRSQ (Fonds de la recherche en santé du Québec) Project manager: Institut de la Statistique du Québec (ISQ) Project manager: Institut de la Statistique du Québec (ISQ)

11. Overview of Health Data Collection Research focuses Research focuses Poverty, stress and cardiovascular disease (CVD) (GRIS) Poverty, stress and cardiovascular disease (CVD) (GRIS) DNA and behaviour (GRIP) DNA and behaviour (GRIP) Environmental health (GRIS and GRIP) Environmental health (GRIS and GRIP) Home visit Home visit All regions of Quebec All regions of Quebec Families contacted = 1,974 Families contacted = 1,974 March – December 2008 March – December 2008

12. 2008 Collection Period JanuaryFebruaryMarchAprilMayJuneJulyAugustSept.Oct.Nov.Dec. Component Core Health 7 days / week Weekends only Summer

13. Collection Instruments Self-administered questionnaire for the parent (20 minutes) Self-administered questionnaire for the parent (20 minutes) Child questionnaire administered by the nurse (20 minutes) Child questionnaire administered by the nurse (20 minutes) Self-assessment of sexual maturity (Tanner) (5 minutes) Self-assessment of sexual maturity (Tanner) (5 minutes) Measurement of changes in heart rhythm (Holter) (continuous) Measurement of changes in heart rhythm (Holter) (continuous) Anthropometric measurements of child (20 minutes) Anthropometric measurements of child (20 minutes) Blood sample from fasting child (10 minutes) Blood sample from fasting child (10 minutes) Measurement of child’s blood pressure while seated (10 minutes) Measurement of child’s blood pressure while seated (10 minutes) Saliva collection for DNA preparation if necessary (5 minutes) Saliva collection for DNA preparation if necessary (5 minutes) Saliva collection for cortisol measurement (4 X 2 minutes) Saliva collection for cortisol measurement (4 X 2 minutes)

14. Results of the Pre-test May – August 2007 May – August 2007 53 families seen; blood samples taken from 39 of them 53 families seen; blood samples taken from 39 of them n% No. of families contacted in all96 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 Component55 (55/63) 87% No. of families who completed Health Component53 (53/63) 84% Blood sample agreed to46 (46/55) 84% Blood sample taken39 (39/53) 74% Saliva (Oragene) taken for DNA (if blood not taken) 14 (14/53) 26%

15. Part 3 Steps in the Collection Process Step 1: Recruiting participants Step 1: Recruiting participants Step 2: Making appointments Step 2: Making appointments Step 3: Visiting the family Step 3: Visiting the family Step 4: Forwarding samples and data Step 4: Forwarding samples and data

16. Step 1: Recruiting Participants 1.ISQ 2.ISQ 2.ISQ 3.BIP 4.BIP 5.BIP Through administrative data from MELS Core Component Health data collection Verbal consent

17. Step 2: Making Appointments Calls to make appointments (BIP) Calls to make appointments (BIP) BIP informs the nursing company (QHS) of the appointments BIP informs the nursing company (QHS) of the appointments QHS assigns appointments to available nurses QHS assigns appointments to available nurses The nurses confirm the appointment with the family two days in advance (reminder that the child must be fasting) The nurses confirm the appointment with the family two days in advance (reminder that the child must be fasting)

18. Step 3: Visiting the Family (2.5 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 fasting child (10 min) Collect blood sample from fasting 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 parent (20 min) Mother completes self-administered questionnaire for the 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 results Give out rewards and provide results Week following the home visit: Mother and child collect saliva samples Week following the home visit: Mother and child collect saliva samples

19. Step 4: Forwarding Specimens and Data Holter data Laval H Holter analysis McGill U Epi analysis BIP Data input Douglas H DNA analysis 26 regional hospitals Ste-Justine H CVD analysis Biological samples Questionnaires Université de Montréal Track samples Douglas H Cortisol analysis Salivary cortisol LNSPQ Lead analysis ISQ Send results to respondents BIP

20. Part 4 Collecting the Data for the Health Component Difficulties in implementing the initial collection method Difficulties in implementing the initial collection method Changes made in the collection method Changes made in the collection method Preliminary results Preliminary results Participation and attrition Participation and attrition

21. Difficulties in Implementing the Initial Collection Method Limited availability of nurses Limited availability of nurses Difficult to recruit more nurses (complex project, a lot of travel, etc.) Difficult to recruit more nurses (complex project, a lot of travel, etc.) Problems with communications between principals Problems with communications between principals Constraint associated with availability of materials ($) Constraint associated with availability of materials ($) Time constraint Time constraint

22. Changes Made in the Collection Method Along the Way Appointments made by the nurses Appointments made by the nurses Université de Montréal played a role in recruiting nurses Université de Montréal played a role in recruiting nurses Cooperation with other regional hospitals based on nurses’ area of residence Cooperation with other regional hospitals based on nurses’ area of residence Communications between firms kept to a minimum Communications between firms kept to a minimum Additional materials brought in Additional materials brought in Collection period extended Collection period extended

23. Preliminary Results Results for Health Component as of Oct. 1, 2008 Results for Health Component as of Oct. 1, 2008 Estimate of final n Estimate of final n n Estimated final n% No. of families contacted overall1733 No. of families who completed Core Component1394 No. of families who agreed to do Health Component1046 1046/1733 53% No. of families who completed Health Component655998 655/998 66% Blood test agreed to836 836/1046 80% Blood test taken / Blood test agreed to711 711/836 85%

24. Participation and Attrition Favourable factors accounting for participation Favourable factors accounting for participation “Home” laboratory “Home” laboratory A subject of current interest: health A subject of current interest: health Return of lipid profile results Return of lipid profile results Financial compensation ($40) Financial compensation ($40) Unfavourable factors accounting for attrition Unfavourable factors accounting for attrition Length of visit (2.5 hours) Length of visit (2.5 hours) Intrusive nature of measurements Intrusive nature of measurements Visit occurs only a short time after the Core Component Visit occurs only a short time after the Core Component Families asked to participate for the last 10 years Families asked to participate for the last 10 years

25. Conclusion Suggestions for future collection of health data Suggestions for future collection of health data Manage the nurses internally Manage the nurses internally Limit the number of principals involved in the process Limit the number of principals involved in the process Have nurses make the appointments Have nurses make the appointments Continue giving families their results Continue giving families their results

26. Québec Longitudinal Study of Child Development Thank you for your attention! http://www.jesuisjeserai.stat.gouv.qc.ca