title: Antenatal screening for haemoglobinopathies in primary care: a whole system participatory action research project.
abstract: BACKGROUND
  The usual system for antenatal screening for haemoglobinopathies permits termination only late in the second trimester of pregnancy.
  
  
  OBJECTIVE
  To evaluate a system where pregnant women are screened in general practice, and to develop a model of care pathway or whole system research able to bring into view unexpected effects of health service innovation.
  
  
  METHODS
  A whole system participatory action research approach was used. Six purposefully chosen general practices screened women who attended with a new pregnancy. Data of gestational age of screening were compared with two control groups. Qualitative data were gathered through workshops, interviews and feedback to the project steering group. At facilitated annual workshops participants from all parts of the care pathway produced a consensus about the meaning of the data as a whole.
  
  
  METHODS
  Six general practices in north London.
  
  
  METHODS
  A whole system participatory action research approach allowed stakeholders from throughout the care pathway to pilot the innovation and reflect on the meaning and significance of quantitative and qualitative data.
  
  
  RESULTS
  The gestational age of screening in general practice was 4.1 weeks earlier (95% confidence interval (CI) = 3.41 to 4.68) than in hospital clinics (P<0.001), and 2.9 weeks earlier (95% CI = 2.07 to 3.65) than in community midwife clinics (P <0.001). However, only 35% of pregnant women in the study were screened in the practices. Changes required throughout the whole care pathway make wider implementation more difficult than at first realised. The cost within general practice is greater than initially appreciated owing to a perceived need to provide counselling about other issues at the same time. Practitioners considered that other ways of early screening should be explored, including preconceptual screening. The research approach was able to bring into view unexpected effects of the innovation, but health workers were unfamiliar with the participatory processes.
  
  
  CONCLUSIONS
  Antenatal screening for haemoglobinopathies in general practice lowers the gestational age at which an at-risk pregnancy can be identified. However, widespread implementation of such screening may be too difficult.
authors.affiliation: Thames Valley University and Brent Teaching Primary Care Trust, London. paul.thomas@tvu.ac.uk
authors.forename: Paul
authors.initials: P
authors.lastname: Thomas
authors.forename: Lola
authors.initials: L
authors.lastname: Oni
authors.forename: Mabel
authors.initials: M
authors.lastname: Alli
authors.forename: Judith
authors.initials: J
authors.lastname: St Hilaire
authors.forename: Alma
authors.initials: A
authors.lastname: Smith
authors.forename: Conan
authors.initials: C
authors.lastname: Leavey
authors.forename: Ricky
authors.initials: R
authors.lastname: Banarsee
mesh_terms: D000755:Anemia, Sickle Cell / Q000517:prevention & control*; D005194:Family Practice; D005240:Feasibility Studies; D005260:Female; D006801:Humans; D008131:London; D011247:Pregnancy; D011250:Pregnancy Complications, Hematologic / Q000517:prevention & control*; D011261:Pregnancy Trimester, First; D011296:Prenatal Diagnosis / Q000379:methods*; D015397:Program Evaluation; D013789:Thalassemia / Q000517:prevention & control*