了解黑人美国社区中与髓瘤相关的信息需求和沟通偏好:一项探索性研究
N S Esquivel1, J P Tzeng2, K Treiman2
1RTI International, Research Triangle Park, Durham, NC, USA. nsarris@rti.org.
概括
黑人美国人经历了骨髓瘤健康差异. 骨髓瘤链接倡议通过了解患者,社区和初级保健提供者对更好的教育和支持的需求来解决这些问题.
科学领域:
- 血液学 血液学 血液学
- 在瘤学瘤学.
- 公共卫生 公共卫生
背景情况:
- 多发性骨髓瘤是一种重要的血液癌症,具有复杂的治疗挑战.
- 黑人美国人在骨髓瘤发病率,诊断,治疗机会和死亡率方面面临着显著的健康差异.
- 白血病和淋巴瘤学会的骨髓瘤链接倡议旨在通过有针对性的教育和宣传来减少这些差异.
研究的目的:
- 对"骨髓瘤链接"倡议进行形成性评估.
- 了解患有髓瘤的患者,社区成员和初级保健提供者 (PCP) 的信息和沟通需求.
- 确定对教育材料和支持服务的偏好,以减少健康差异.
主要方法:
- 在美国15个城市实施了Myeloma Link.进行了定性评估.
- 通过采访8名患者和6名PCP收集的数据.
- 两个重点小组由10名社区成员组成.
主要成果:
- 患者希望了解其他黑人美国人的治疗,临床试验和同行支持信息.
- 社区成员需要通过可信的组织对骨髓瘤迹象/症状进行宣传;他们基本上对这种疾病一无所知.
- 尽管时间有限,PCP需要关于诊断,治疗,转诊和改善护理的简明信息.
结论:
- 像Myeloma Link这样的外展倡议对于解决患有骨髓瘤的黑人美国人的特定需求至关重要.
- 量身定制的教育内容和支持服务对患者,社区和医疗保健提供者至关重要.
- 调查结果强调了加强自我宣传和提供可操作信息以减少健康差距的重要性.
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