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Published by Oxford University Press on behalf of the International Epidemiological Association. International Journal of Epidemiology 2007;36:504–511
ß The Author 2007; all rights reserved. Advance Access publication 13 March 2007 doi:10.1093/ije/dym016
COHORT PROFILE
How did the study come about? first cohort born into a democratic South Africa. At the start,
the study was called Birth to Ten (BT10), but changed to Birth to
504
BIRTH TO TWENTY STUDY IN SOUTH AFRICA 505
and participation. Later questionnaires began to explore urban area under Apartheid law, or because they wanted the
early lifestyle risk factors—diet and weight gain, parental child’s father, a migrant labourer, to witness his child’s birth
monitoring and supervision, educational failure, and sexual and thus secure the child’s support. All births are registered in
experimentation, and a wide range of physical (body composi- the municipal area under a local ordinance, but to ensure that
tion and bone mineral density scans) and physiological our records were complete, we also checked mortuaries and
measures (pubertal development, biochemical markers of back-tracked children brought to clinics for their first 6-week
insulin resistance) were introduced. Now that the cohort has postnatal check-up. According to the records we compiled, 5449
turned 16, data collection is focused on the prediction and births were registered during the 7-week enrolment period,
measurement of risk, particularly in three domains: (i) sexual 3273 of which met the cohort entry criterion of continued
and reproductive behaviour (sexual debut, sexual violence, residence in the area. Of this group, we are still in contact with
unplanned pregnancy and sexually transmitted infections), (ii) more than 70% of the cohort at age of 16 years.
early expression of the metabolic syndrome (obesity, hyperten- Birth notification forms contain basic information from which
sion and insulin resistance) and (iii) social marginalization we could derive characteristics of total births. In terms of so-
(school drop out, psychosocial difficulties, substance abuse, called race groups, the total cohort is roughly representative of
violence and conflict with the law). the South African population, except for an under-representa-
The major change in the study occurred as we neared our tion of White children. Whites comprise 9.2% of the population
10-year goal. BT10, as it was then called, was a collaborative of the country.5 The reason for their under-representation is 2-
enterprise involving more than 20 researchers, some of whom fold. First, it was not possible to enrol children through private
had interests in only one specialized area or particular age health practitioners and facilities, which White families
Table 1 Characteristics of the BT20 cohort were recruited from local communities, some of whom have
BT20 cohort been employed in the study from its inception. Staff is also
Characteristics (n ¼ 3273) trained in cohort maintenance, as well as Good Clinical Practice
Population group and ethical research conduct.
African 2568 (78%) The maintenance strategy, especially in the first decade, was
directed to parents and other primary caregivers. Dissemination
White 207 (6%)
of information about the study was crucial to ensure that the
Coloured 383 (12%)
requirements were well understood and participants were
Indian 115 (4%) motivated to take part.9 Information is disseminated by staff
Maternal age at each contact, as well as through newsletters and workshops.
<17 years 92 (3%) Compensation for transport expenses is provided for families
17–19 392 (12%) who come into one of the two data collection sites, at the rate
of R50.00 a visit.§ Tracing of families is done through multiple
20–38 2692 (82%)
contact addresses and telephone numbers collected from all
39þ 95 (3%)
participants at each contact.
Gravidity Contact with families is maintained between data collection
1 1094 (33%) phases through birthday cards, reports on the study in
2–4 1875 (57%) newspapers and on radio and television and regular newsletters
55 304 (9%)
for parents as well as for child/adolescent participants and
& Homes
278
596
54
3273
15
Study sites
103 (4%)
2005–2006
used on the web site, highlights from each of five areas are
15 years briefly summarized as follows.
Methodological issues
54
25
Study sites
96 (4%)
& Homes
270
609
2340
3273
2004–2005
14 years
33
Study sites
70 (3%)
& Homes
268
591
2363
3273
2001–2003 2003–2004
169
4 (0.2%)
2470
31
3273
49
Study
sites
found that White women using private facilities were ten times
more likely to have a Caesarean section delivery than African
women using a public health service.13 More recently,
methodological substudies have concentrated on ensuring
4
Homes &
28
16
58
16 (1.0%)
3273
Schools
1517
1498 (46%)
accurate measurement of pubertal status14 and maximizing
9/10 years
1999–2001
27
3273
27
Schools
2087
138
182
9 (0.4%)
1594 (49%) 1907 (58%) 2213 (68%) 1839 (56%) 1858 (57%) 1586 (48%) 2023 (62%)
1997–1999
7/8 years
21
Homes
157
283
15 (0.9%)
1798
3273
1995–1996
nicotinic acid and pantothenic acid fell below the RDA in 2003.
5 years
Table 2 Number of study participants contacted and lost to follow-up over the past 10 data collection waves
298
576
16 (.07%)
2173
25
3273
41
1993–1995
3/4 years
1873
20
3273
18
Homes
199
238
3 (.09%)
13
56
51
15
Homes
2 (1.0%)
2229
3273
status) have greater hip bone mass than White children, and
similar bone mass at the spine and appendicular skeleton after
adjusting for differences in stature, likely due to genetic rather
Homes
0
Clinics &
20 (1.0%)
1943
46
39
3273
21
6 months
1594
3273
–
–
Antenatal
Year reported in this data wave 1989–1990
parental perceived ‘difficultness’ and poor peer relations.21 to clear glucose from the circulation is reduced in children with
Exposure to violence, in the home and the community, low birth weights. Body mass index at 7 years was positively
has been found to have a pervasive relationship with children’s associated with both insulin concentrations and insulin resist-
emotional and social adjustment, independent of the impact of ance, as was the rate of weight change or weight velocity from
poverty.22,23 birth to 7 years. Finally, high subcutaneous fat levels at the
subscapular and triceps sites, measured at age 7, were also
Sexual and lifestyle risk positively related to both insulin concentrations and insulin
resistance.25
Sexual risk
Unwanted teen pregnancy and a high prevalence of sexually
transmitted infections (STI), including HIV, are significant
health threats in South Africa, both increasing as BT20 What are the main strengths
children move into their late teens. To date, 15 girls in
the cohort have delivered a child, the first just after turning and weaknesses of the study?
14 and a further 13 are pregnant. Sexual intercourse A critical strength has been the perseverance of a small group
was reported among 5% of 13-year-olds, equally by boys and of people determined to maintain the study, with little funding
girls; it picks up rapidly at 14 (17% boys, 6% girls) and 15 (27% and against some opposition. At the start, several prominent
boys, 11% girls). However, amongst both boys and girls public health specialists warned that long-term follow-up was
more than half of all sexual activity reported, including neither possible nor particularly useful. The core group, who
foreplay and oral sex, is indicated to be non-consensual.24 also provide continuity, drove a collaborative, multidisciplinary
Two BT20 adolescents have tested HIV positive through a approach and a strong association with health services, schools
voluntary screening programme and several have been treated and the community.
for other sexually transmitted infections. As resources have grown, most significantly with long-term
funding from the Wellcome Trust, stable systems have been
Metabolic disease risk established for the management of the study. A team of very
Children who are born small and then grow quickly appear to committed people, responsible for operations, administration,
be at increased risk of obesity and risk factors for Type II laboratory and data, report to the investigators on a weekly
diabetes.25,26 We found that lower birth weight was associated basis. Sophisticated bar code, filing, and electronic systems
with greater insulin production and higher glucose concen- have been designed to print address lists, weekly appointments,
trations at age 7. This suggests that the ability of insulin tracking participants through the study components, data
BIRTH TO TWENTY STUDY IN SOUTH AFRICA 509
completeness and quality, entry, cleaning and the construction but, until very recently, this was ad hoc rather than an integral
of analytical datasets. part of the staffing structure.
Considerable energy goes into tracking and cohort main-
tenance. There are few street names and numbers in Soweto,
informal housing springs up quickly and they confuse the Can I get hold of the data?
visual landscape, many people have temporary work away from
home and there are few fixed line telephones. Mobile phone
Where can I find out more?
usage is burgeoning, making it easier to contact caregivers and The outline of the study, history and questionnaires are
children. To date, attrition has been low in comparison to other available on the website and collaborators can pull down data
developing country cohorts,6,8 and occurred largely in children’s sets from the web through password access (http://www.wits.
early years. It is difficult maintaining better-off families who ac.za/birthto20). Collaborations are established through formal
see little benefit in participating in a long-term study with twice agreements with the principal investigators (lrichter@hsrc.
yearly data collection, including fasting urine and blood draws. ac.za), and include funds needed for the collaboration, staff
However, most African participants identify strongly with requirements and mutual obligations, including the return of
the study, and report being happy to participate if the analytical datasets, notification of publications, etc. Our current
information collected can be used to improve the quality of grants cover costs involved in planned data collection and
life of South Africans. analysis. New initiatives that require additional staff or resour-
ces to collect or clean data have to be additionally funded.
The study is unique and has been a source of reference
Apart from a core group of South Africans at local universities
14
Nicky Padayachee, Krisela Steyn, Lucy Wagstaff and Dinky Norris SA, Richter L. Usefulness and reliability of Tanner pubertal
Levitt. self- rating to urban Black adolescents in South Africa. J Res Adol
The study would never have survived or thrived without the 2005;15:609–24.
15
dedication of staff, especially those field staff who have been Norris SA, Richter LM. HIV/AIDS risk research among young
with the study since it began: Barbara Moneypote, Eliza Tseou, people: a methodological study of the reporting of sensitive issues
among adolescents in the Birth to Twenty Study, South
Thabile Sibiya, Mantoa Langa and Andreas Phake.
Africa. Proceedings of the XVIth International AIDS Conference, Toronto,
13–18 August, 2006.
16
MacKeown JM, Cleaton-Jones PE, Norris SA. Nutrient intake among
a longitudinal group of urban black South African children at four
References interception between 1995 and 2000 (Birth-to-Ten Study). Nutr Res
1
Yach D, Padayachee N, Cameron N, Wagstaff L, Richter L. ‘‘Birth to 2003;23:185–97.
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Ten’’ - A study of children of the 1990’s living in the Johannesburg- MacKeown JM, Pedro TM, Norris SA. Energy, macro-and micro-
Soweto area. South Afr Med J 1990;77:325–26. nutrient intake among a true longitudinal group of South African
2
Yach D, Cameron N, Padayachee L, Wagstaff L, Richter L, Fonn, S. adolescents at two interceptions (2000 and 2003): the Birth to
Birth to ten: Child health in South Africa in the 1990s. Rationale and Twenty (Bt20) study. Pub Health Nut (in press).
18
methods of a birth cohort study. Paed Perinat Epidemiol 1991;5:211–33. Cameron N. Physical growth in a transitional economy: the
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Barbarin O, Richter L. Mandela’s children: Growing up in post-apartheid aftermath of South African apartheid. Econom Human Biol
South Africa. New York: Routledge, 2001. 2003;1:29–42.
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4
Fonn S, De Beer M, Kgamphe S et al. ‘‘Birth to Ten’’ - Pilot studies to Vidulich L, Norris SA, Cameron N, Pettifor JM. Ethnic differences in