Using two on-going HIV studies to obtain clinical data from before, during and after pregnancy for HIV-positive women.

TitleUsing two on-going HIV studies to obtain clinical data from before, during and after pregnancy for HIV-positive women.
Publication TypeJournal Article
Year of Publication2012
AuthorsHuntington S, Bansi L, Thorne C, Anderson J, Newell M, Taylor G, Pillay D, Hill T, Tookey P and Sabin C
Corporate AuthorsUK Collaborative HIV Cohort(UK CHIC) Study and National Study of HIV in Pregnancy and Childhood(NSHPC)
JournalBMC Med Res Methodol
Volume12
Pagination110
Date Published2012 Jul 28
ISSN1471-2288
KeywordsAdolescent, Adult, Anti-HIV Agents, Cohort Studies, Female, HIV Infections, HIV Seropositivity, Humans, Ireland, Medical Record Linkage, Patient Acceptance of Health Care, Pregnancy, Pregnancy Complications, Infectious, Pregnancy Outcome, United Kingdom, Women's Health, Young Adult
Abstract

BACKGROUND: The UK Collaborative HIV Cohort (UK CHIC) is an observational study that collates data on HIV-positive adults accessing HIV clinical care at (currently) 13 large clinics in the UK but does not collect pregnancy specific data. The National Study of HIV in Pregnancy and Childhood (NSHPC) collates data on HIV-positive women receiving antenatal care from every maternity unit in the UK and Ireland. Both studies collate pseudonymised data and neither dataset contains unique patient identifiers. A methodology was developed to find and match records for women reported to both studies thereby obtaining clinical and treatment data on pregnant HIV-positive women not available from either dataset alone.RESULTS: Women in UK CHIC receiving HIV-clinical care in 1996-2009, were found in the NSHPC dataset by initially 'linking' records with identical date-of-birth, linked records were then accepted as a genuine 'match', if they had further matching fields including CD4 test date. In total, 2063 women were found in both datasets, representing 23.1% of HIV-positive women with a pregnancy in the UK (n = 8932). Clinical data was available in UK CHIC following most pregnancies (92.0%, 2471/2685 pregnancies starting before 2009). There was bias towards matching women with repeat pregnancies (35.9% (741/2063) of women found in both datasets had a repeat pregnancy compared to 21.9% (1502/6869) of women in NSHPC only) and matching women HIV diagnosed before their first reported pregnancy (54.8% (1131/2063) compared to 47.7% (3278/6869), respectively).CONCLUSIONS: Through the use of demographic data and clinical dates, records from two independent studies were successfully matched, providing data not available from either study alone.

DOI10.1186/1471-2288-12-110
Alternate JournalBMC Med Res Methodol
PubMed ID22839414
PubMed Central IDPMC3475121
Grant ListG0600337 / / Medical Research Council / United Kingdom
/ / Department of Health / United Kingdom
G00001999 / / Medical Research Council / United Kingdom
/ / Wellcome Trust / United Kingdom
081082 / / Wellcome Trust / United Kingdom