Center for Patient Care and Outcomes Research, Medical College of Wisconsin, 8701 Watertown Plank Rd, Milwaukee, WI 53226, USA.
J Natl Med Assoc. 2012 Nov-Dec;104(11-12):528-34. doi: 10.1016/s0027-9684(15)30219-4.
People with heterozygous status for sickle cell disease (also called sickle cell trait) are essentially healthy, but evidence of rare health problems has increased interest in screening adolescents and young adults prior to enlisting in athletics or military service. Ironically, almost everyone with sickle cell trait is already identified during routine newborn screening for sickle cell disease, but this identification may never reach the parents. As part of a larger statewide study of communication after newborn screening, we decided to document the amount of labor required to connect sickle cell trait screening results with primary care providers (PCPs). Case review methods examined records and call logs from the first 150 cases in a 42-month project. Our study procedures identified PCPs for 136 of 150 infants (90.6%); a total of 266 phone calls were needed. We identified 9 categories of experiences, ranging from incorrect baby names to restrictions on accepting Medicaid patients. Cases demonstrate that it is possible to connect with most PCPs after newborn screening despite warnings about difficulties with this population. Success was due to persistence, relationships with clinics and hospitals, and Internet search capabilities. If sickle cell trait identification is necessary to protect health, then only modest increases in effort will be needed to reduce disparities in service.
杂合子镰状细胞病（也称为镰状细胞特征）患者的身体基本健康，但罕见健康问题的证据增加了人们对在青少年和年轻人参加体育运动或服兵役之前进行筛查的兴趣。具有讽刺意味的是，几乎所有镰状细胞特征的人在镰状细胞病的常规新生儿筛查中都已经被识别出来，但这种识别可能永远不会传达给父母。作为新生儿筛查后更大范围的全州范围内沟通研究的一部分，我们决定记录将镰状细胞特征筛查结果与初级保健提供者（PCP）联系起来所需的工作量。案例回顾方法检查了 42 个月项目中的前 150 个案例的记录和通话记录。我们的研究程序确定了 150 名婴儿中的 136 名 PCP（90.6％）；总共需要 266 个电话。我们确定了 9 种体验类别，从婴儿名字不正确到限制接受医疗补助患者不等。案例表明，尽管存在与该人群相关的困难，但在新生儿筛查后与大多数 PCP 联系是有可能的。成功是由于坚持不懈，与诊所和医院的关系以及互联网搜索能力。如果识别镰状细胞特征对于保护健康是必要的，那么只需要适度增加工作量，就可以减少服务方面的差异。
