Sickle Cell Disease Screening Programs: Integration Into Managed Care
Sally C. Davies
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.
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