Children and longitudinal studies: Experiences from the Generation R Study

Transcription

1 Children and longitudinal studies: Experiences from the Generation R Study Rob Taal, MD PhD-student Generation R EUCCONET workshop - Surveying Children in Longitudinal Studies

2 Outline The Generation R Study Study population and data collection pregnancy four years (short) Current status: 5 data collection Retention strategies Future plans: 9 Plans for retention and involvement of the child participants

3 The Generation R Study Population-based prospective cohort study From early fetal life until young adulthood Enrolment from 2001 to 2006 Almost 10,000 parents and children Urban, multi-ethnic population

4 The Generation R Study Main hypothesis Critical periods in fetal and early postnatal life are important for health and disease in childhood and adulthood Primary areas of research Growth and physical development Behavioural and cognitive development Diseases in childhood Health and healthcare

5 The Generation R Study General aims To describe normal and abnormal growth, development and health from fetal life until young adulthood To identify biological, environmental and social determinants of normal and abnormal growth, development and health from fetal life until young adulthood To examine the effectiveness of current strategies for prevention and early identification of groups at risk

6 The Generation R Study Birth From first trimester to the early postnatal period Prenatally: mothers approached at routine visit for fetal ultrasound (91%) Postnatally: mothers approached at the child health centres (9%) Mothers living in study area at delivery date Written consent 6

7 The Generation R Study Phase I: During pregnancy and delivery Mother and partner (12, 20, 30 weeks of gestation) Fetal ultrasound examinations (growth, fetal organ development) Questionnaires (health, diet, emotions, living conditions) Physical examinations (weight, heigth, blood pressure) Blood and urine samples Birth Information from midwives and obstetricians (pregnancy, delivery) Cord blood samples Home visit at 12 weeks Consent after birth Neuromotoric examinations

8 The Generation R Study Phase II: Birth to 4 years Routine child health centers (9 visits, children) Growth, development, screening, vaccination Questionnaires (once a year, parents) Diet, diseases, behaviour, cognition, healthcare use Focus cohort (6 weeks, 6, 14, 24 and 36 months, children) Ultrasound examinations, growth in detail, blood samples

9 Study population Included 9,778 pregnant women 6,347 partners 9,745 children 98% live births 1.4% fetal deaths 0.7% loss to follow-up All inhabitants of Rotterdam, the Netherlands during delivery of the children; response rate of 61%

10 Study population Maternal ethnicity Cape verdian 4% Others 10% Dutch Antilles 3% Maroccan 9% Turkish 6% Dutch, other European 59% Surinamese 9% Jaddoe et al. (2010) The Generation R Study: design and cohort update Eur J Epidemiol. 25(11):

11 Study population Maternal educational level Lower education 11% Higher education 43% Intermediate education 46% Jaddoe et al. (2010) The Generation R Study: design and cohort update Eur J Epidemiol. 25(11):

12 The Generation R Study Phase III: 5 to 16 years Overall structure Yearly questionnaires 3-yearly visits to research center: extensive measurements Currently 5 visits at research center are ongoing End focus@5 planned ~September 2011

13 hours in-person visit of mother and child at research center Sophia Children s Hospital 40 minutes of assessments, 10 minute break (repeats 3x) Mother and child are assessed in the same room, at the same time Feedback of the results (if available) by medical doctors

14 5 data collection in children Children get a book in advance, explaining what research will be done during the visit Part of the book has empty spots for exam results In each room the children will collect results for their book Picture of the bones (DXA scan) Heart ultrasound Tooth pictures Child friendly staff and environment (research center = zoo) Blood sampling is final step, they get local anesthetic creme at the start Small gift at the end

15 The Generation R Study Phase III: 5 to 16 years Focus at 5 Growth DXA scan Ultrasound heart, kidneys, abdominal fat Retina pictures Urine, blood, saliva Language development, cognition Berkeley puppet interview Lung function Blood pressure, pulse wave velocity

16 Retention strategies Current strategies (group level) News letters (4 times a year) Parents group Database linking to Municipal Health Service (country wide) Feedback Updating website include children s section 16

17 Retention strategies Current strategies (individual level) Research staff from ethnic minority groups Care-cases defined on response rates (individualized approaches) Transport arrangements to our research center Feedback Contact information of grandparents 17

18 Retention strategies Home visits to participants that cannot be reached by phone, mail/ By research assistants of ethnic minority groups Information on Generation R and Focus at 5 is given (if needed in proper language) Aim is to get the participants enthusiastic again to actively participate and to visit our research center 18

19 Retention strategies Around 600 home visits made up to August 2010: 35% of all participants were reached successfully 80% of all reached persons made an appointment 5.5% are again participating with questionnaires Continues 19

20 Retention strategies No retention strategies yet aimed at the children Shift attention to the children (but not forgetting the parents)

21 The Generation R Study Phase III: 5 to 16 years Focus at 9 Will start approximately September 2011 Structured as Focus at 5 MRI measurements added

22 Surveying children Tanner staging; can/should this be done? What would be the best way? MRI in children, optimal image quality What is the best theme for the research centre, difference boys and girls Planning questionnaires in children

23 Retention strategies New retention strategies Social Media Smartphones Make children part of online community Generation R

24 Social media Hyves Facebook Twitter

25 Hyves

26 Facebook

27 Social media News updates Online polls Share scientific results

28 Mobile phones Dramatic increase in popularity in the Netherlands Recent survey showed that over 75% of the children of 9-14 years possesses a mobile phone 50% of these phones are Smart Phones Apps for questionnaire already available, and new ones in development No need for personal computer Questionnaire always at hand on route to other places Especially appealing to kids, also to parents

29 New ideas for 9 Web-based questionnaires Mobile phone applications for questionnaires Generation R application which actively feeds information and keeps the kids involved More active involvement in online communities Questionnaire lottery

30 The Generation R Study Group 30

31 Thank you Any questions? 31