The Nigeria Leadership Initiative White Papers: Volume 1

These White Papers attempt to address many of these challenges, showing the need for urgent action, deconstructing where possible root causes, and making practical suggestions on actions to be taken

Sickle Cell Disease Screening Programs: Integration Into Managed Care

Screening programs for sickle cell disease, when effective, can reduce morbidity and mortality as a direct consequence of patient education and optimized clinical management. However, informed patient or parental consent is necessary prior to the screening process as a person's sickle status is genetic information which can, when poorly communicated to clients, lead to harm. Screening programs are at their most effective when the full process is linked, including pre-screening information for clients available in an appropriate format, continuing education for health professionals, and effective post-result education with specialist follow-up for those affected by sickle cell disease. Effective handling, storage and retrieval of results is important for patients and professionals alike, yet this remains a major problem in most healthcare organizations. This problem is maximized because of the great variety of settings, professionals and groupings that are involved in a comprehensive screening program. Managed care programs need to review the genetic risk relating to sickle cell disease for the populations they serve in order to consider whether to develop programs that are universal in coverage or targeted, depending on the most cost-effective approach. In areas where the population is almost solely of North European origin and therefore where the sickle gene is rare, targeted programs are appropriate with linkage for provision of educational materials and specialist follow-up to other centers with greater experience.Adolescents, Children, Disease management programmes, Infants, Neonates, Pharmacoeconomics, Pregnancy, Sickle cell anaemia

Antenatal screening for haemoglobinopathies in primary care - a whole system participatory action research project

BACKGROUND: The usual system for antenatal screening for haemoglobinopathies permits termination only late in the second trimester of pregnancy. AIM: 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. DESIGN OF STUDY: 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. SETTING: Six general practices in north London. METHOD: 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. CONCLUSION: 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