Follow-up of Children With Trait in a Rural Setting
The Comprehensive Sickle Cell Centers were established in 1972 to test, educate, counsel, and research sickle cell anemia and related hemoglobinopathies. Standards and protocols for testing, education, and research were readily established because similar procedures and methods were already in operation at the institutions where the centers were located. The most difficult and still the most controversial program to provide is counseling. It became evident, early, that there is no universally accepted method for informing carriers of abnormal Hb S about their results. Centers located in large urban areas with a limited testing radius do not face the same problems as centers located in rural areas where the testing radius may cover an entire state or several states. Individual, or one-on-one, counseling of persons with trait results appears to be successful for urban centers where the individual may be called to the center and given information. But, in a rural setting, it is not feasible for the center to ask a person to travel 350 miles to be told he or she has nothing to worry about. And it is not cost-effective to send a caseworker 350 miles to say the same thing. It must, therefore, be concluded that each agency or center must adopt counseling methods that meet its specific needs. Each program must be flexible, imaginative, and creative and must successfully and accurately deliver information about being a carrier for the sickle gene or other hemoglobinopathy and its implication and significance for patients and their future offspring. To do this, we must first look at the problems facing us.