Keys to Recruiting and Retaining Seriously Ill African Americans With Sickle Cell Disease in Longitudinal Studies: Respectful Engagement and Persistence
Keys to Recruiting and Retaining Seriously Ill African Americans With Sickle Cell Disease in Longitudinal Studies: Respectful Engagement and Persistence
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DOI：
10.1177/1049909119868657
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发表时间：
2019-08-08
影响因子：
1.9
通讯作者：
Wilkie, Diana J.
中科院分区：
文献类型：
--
作者：
Suarez, Marie L.;Schlaeger, Judith M.;Wilkie, Diana J.
目的：镰状细胞病（SCD）是一种严重的疾病，具有致残性急性和慢性疼痛，需要更好的治疗，但患者参与研究不足是推进SCD疼痛管理的主要障碍。本文的目的是讨论进行SCD研究的挑战和成功克服这些挑战的方法。设计：在一项旨在描述SCD疼痛表型的重复测量纵向研究中，我们招募了311名非洲血统的成年人。成人SCD患者完成4次研究访视，间隔6个月，年龄和性别匹配的健康对照组完成1次访视。结果：我们招募并完成了186名SCD患者和125名健康对照者的测量。我们保留了151例SCD患者（18个月内4个时间点的数据）和125例健康对照（1个时间点），但在招募和研究访视完成方面遇到了许多挑战。入组延迟通常是由于患者难以从复杂的生活和频繁的疼痛发作中抽出时间。一旦安排，SCD参与者取消了49%的访问，通常是因为疼痛;对照组取消了30%的预定访问。为促进招聘及挽留人才，我们实施了多项策略，对我们的成功至为重要。结论：患者与疾病、慢性疼痛及其生活状况的斗争导致招募和完成研究访视面临许多挑战。克服挑战的重要因素是获得SCD患者的信任和以参与者为中心的方法。及早发现潜在问题，就可以积极主动地制定战略，从而取得成功。
Objectives: Sickle cell disease (SCD) is a serious illness with disabling acute and chronic pain that needs better therapies, but insufficient patient participation in research is a major impediment to advancing SCD pain management. The purpose of this article is to discuss the challenges of conducting an SCD study and approaches to successfully overcoming those challenges. Design: In a repeated-measures, longitudinal study designed to characterize SCD pain phenotypes, we recruited 311 adults of African ancestry. Adults with SCD completed 4 study visits 6 months apart, and age- and gender-matched healthy controls completed 1 visit. Results: We recruited and completed measures on 186 patients with SCD and 125 healthy controls. We retained 151 patients with SCD with data at 4 time points over 18 months and 125 healthy controls (1 time point) but encountered many challenges in recruitment and study visit completion. Enrollment delays often arose from patients' difficulty in taking time from their complicated lives and frequent pain episodes. Once scheduled, participants with SCD cancelled 49% of visits often because of pain; controls canceled 30% of their scheduled visits. To facilitate recruitment and retention, we implemented a number of strategies that were invaluable in our success. Conclusion: Patients' struggles with illness, chronic pain, and their life situations resulted in many challenges to recruitment and completion of study visits. Important to overcoming challenges was gaining the trust of patients with SCD and a participant-centered approach. Early identification of potential problems allowed strategies to be instituted proactively, leading to success.