title: Influences on participant reporting in the World Health Organisation drugs exposure pregnancy registry; a qualitative study.
abstract: BACKGROUND
  The World Health Organisation has designed a pregnancy registry to investigate the effect of maternal drug use on pregnancy outcomes in resource-limited settings. In this sentinel surveillance system, detailed health and drug use data are prospectively collected from the first antenatal clinic visit until delivery. Over and above other clinical records, the registry relies on accurate participant reports about the drugs they use. Qualitative methods were incorporated into a pilot registry study during 2010 and 2011 to examine barriers to women reporting these drugs and other exposures at antenatal clinics, and how they might be overcome.
  
  
  METHODS
  Twenty-seven focus group discussions were conducted in Ghana, Kenya and Uganda with a total of 208 women either enrolled in the registry or from its source communities. A question guide was designed to uncover the types of exposure data under- or inaccurately reported at antenatal clinics, the underlying reasons, and how women prefer to be asked questions. Transcripts were analysed thematically.
  
  
  RESULTS
  Women said it was important for them to report everything they had used during pregnancy. However, they expressed reservations about revealing their consumption of traditional, over-the-counter medicines and alcohol to antenatal staff because of anticipated negative reactions. Some enrolled participants' improved relationship with registry staff facilitated information sharing and the registry tools helped overcome problems with recall and naming of medicines. Decisions about where women sought care, which influenced medicines used and antenatal clinic attendance, were influenced by pressure within and outside of the formal healthcare system to conform to conflicting behaviours. Conversations also reflected women's responsibilities for producing a healthy baby.
  
  
  CONCLUSIONS
  Women in this study commonly take traditional medicines in pregnancy, and to a lesser extent over-the-counter medicines and alcohol. The World Health Organisation pregnancy registry shows potential to enhance their reporting of these substances at the antenatal clinic. However, more work is needed to find optimal techniques for eliciting accurate reports, especially where the detail of constituents may never be known. It will also be important to find ways of sustaining such drug exposure surveillance systems in busy antenatal clinics.
authors.affiliation: Division of Clinical Pharmacology, Department of Medicine, University of Cape Town, Cape Town, South Africa. elizabeth.allen@uct.ac.za.
authors.forename: Elizabeth N
authors.initials: EN
authors.lastname: Allen
authors.affiliation: World Health Organisation, 1211 Avenue Appia, Geneva, 27, Switzerland. gomesm@who.int.
authors.forename: Melba
authors.initials: M
authors.lastname: Gomes
authors.affiliation: Dodowa Health Research Centre, Dodowa, Ghana. lyevoo@gmail.com.
authors.forename: Lucy
authors.initials: L
authors.lastname: Yevoo
authors.affiliation: Department of Anthropology, Moi University, Eldoret, Kenya. omagesa@gmail.com.
authors.forename: Omar
authors.initials: O
authors.lastname: Egesah
authors.affiliation: School of Public Health, University of Ghana, Dodowa, Ghana. caclerk@gmail.com.
authors.forename: Christine
authors.initials: C
authors.lastname: Clerk
authors.affiliation: Department of Obstetrics and Gynaecology, Makerere University, Kampala, Uganda. byamugisha2001@yahoo.com.
authors.forename: Josaphat
authors.initials: J
authors.lastname: Byamugisha
authors.affiliation: Ministry of Health, Kampala, Uganda. vpadmn@infocom.co.ug.
authors.forename: Anthony
authors.initials: A
authors.lastname: Mbonye
authors.affiliation: Department of Reproductive Health, Moi University, Eldoret, Kenya. eowere@gmail.com.
authors.forename: Edwin
authors.initials: E
authors.lastname: Were
authors.affiliation: Independent Pharmacovigilance Consultant, Cape Town, South Africa. ushmaza@yahoo.com.
authors.forename: Ushma
authors.initials: U
authors.lastname: Mehta
authors.affiliation: Department of Community Health and Behavioural Sciences, Makerere University School of Public Health, Kampala, Uganda. atuyambe.lynn@gmail.com.
authors.forename: Lynn M
authors.initials: LM
authors.lastname: Atuyambe
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D005260:Female; D017144:Focus Groups; D005869:Ghana; D014943:Global Health / Q000706:statistics & numerical data*; D006801:Humans; D007630:Kenya; D008875:Middle Aged; D011247:Pregnancy; D011248:Pregnancy Complications / Q000209:etiology*; D011256:Pregnancy Outcome; D037841:Pregnant People; D036301:Qualitative Research; D012042:Registries / Q000706:statistics & numerical data*; D019966:Substance-Related Disorders / Q000150:complications*; D014454:Uganda; D014944:World Health Organization; D055815:Young Adult