弥合差距:通过实地洞察了解ALS临床试验中的参与障碍
Erica Scirocco1, Allison Pogemiller Bulat2, Judith R Carey1
1Harvard Medical School, Sean M. Healey and AMG Center for ALS & the Neurological Clinical Research Institute, MA General Hospital, Boston, MA, USA.
概括
一个值得信赖的医疗团队,而不是距离,对于那些患有肌缩侧面硬化症 (ALS) 的人来说,加入临床试验是关键. 建立信任和改善沟通可以促进参与ALS研究.
科学领域:
- 神经学 神经学
- 临床研究 临床研究
- 患者倡导 患者倡导
背景情况:
- 参与临床试验对于推进肌缩后侧硬化症 (ALS) 治疗方法至关重要.
- 现有的文献表明,与专门诊所的地理距离是临床试验意识和招生的主要障碍.
- 了解患者和提供者的观点对于改善临床试验可访问性至关重要.
研究的目的:
- 探索患有ALS (pALS) 的人,护理人员和医疗保健提供者的临床试验参与的经验和看法.
- 测试地理距离是ALS临床试验意识和参与的主要障碍的假设.
- 确定影响ALS临床试验招生决策的因素.
主要方法:
- 一项定性和半定量研究,涉及对美国东海岸城市,郊区和农村地区的pALS,护理人员和医疗保健提供者的面对面采访.
- 数据收集的重点是居住在距离专门的ALS诊所90多英里的个人.
- 使用专题分析来解释采访数据.
主要成果:
- 有知识和支持的医疗团队成为影响参与决策的关键因素,取代了地理距离.
- 医疗保健提供者面临的挑战包括时间限制和对研究信息的有限访问,这影响了他们促进试验招生的能力.
- 医疗保健提供者,倡导组织和研究中心之间的非正式伙伴关系对于促进研究参与至关重要.
结论:
- 使用已建立的患者-提供者关系的量身定制的沟通策略可以增强ALS患者的研究参与.
- 改善试验教育,获取,知识和信任对于增加ALS临床研究的入学率至关重要.
- 分散的研究模式为克服参与临床试验的传统障碍提供了机会.
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