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Keys to Recruiting and Retaining Seriously Ill African Americans With Sickle Cell Disease in Longitudinal Studies: Respectful Engagement and Persistence.

纵向研究中招募和留住患有镰状细胞病的重病非裔美国人的关键: 尊重参与和坚持。

  • 影响因子:1.74
  • DOI:10.1177/1049909119868657
  • 作者列表:"Suarez ML","Schlaeger JM","Angulo V","Shuey DA","Carrasco J","Roach KL","Ezenwa MO","Yao Y","Wang ZJ","Molokie RE","Wilkie DJ
  • 发表时间:2020-02-01
Abstract

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.

摘要

目的: 镰状细胞病 (SCD) 是一种严重的疾病,伴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研究的挑战以及成功克服这些挑战的方法。 设计: 在一项旨在表征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。成年SCD患者间隔 6 个月完成 4 次研究访视,年龄和性别匹配的健康对照完成 1 次访视。 结果: 我们招募并完成了 186 例SCD患者和 125 例健康对照的测量。我们保留了 151 例SCD患者,在 18 个月以上的 4 个时间点有数据,125 例健康对照 (1 个时间点),但在招募和完成研究访视时遇到了许多挑战。登记延迟往往是由于患者难以从复杂的生活中抽出时间和频繁的疼痛发作引起的。一旦预定,SCD的参与者取消了 49% 的访视,通常是因为疼痛; 对照取消了 30% 的预定访视。为了促进招聘和保留,我们实施了许多对我们的成功非常宝贵的战略。 结论: 患者与疾病、慢性疼痛和生活状况的斗争给招募和完成研究访视带来了许多挑战。克服挑战的重要意义在于获得SCD患者的信任和以参与者为中心的方法。对潜在问题的早期识别允许主动制定战略,从而取得成功。

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作者列表:["Yang J","Peng CF","Qi Y","Rao XQ","Guo F","Hou Y","He W","Wu J","Chen YY","Zhao X","Wang YN","Peng H","Wang D","Du L","Luo MY","Huang QF","Liu HL","Yin A"]

METHODS:BACKGROUND:Thalassemia is one of the most common monogenetic diseases in the south of China and Southeast Asia. Hemoglobin Bart's hydrops fetalis syndrome was caused by a homozygous Southeast Asian deletion (-/-) in the HBA gene. Few studies have proved the potential of screen for Bart's hydrops fetalis using fetal cell-free DNA. However, the number of cases is still relatively small. Clinical trials of large samples would be needed. OBJECTIVE:In this study, we aimed to develop a noninvasive method of target-captured sequencing and genotyping by the Bayesian method using cell-free fetal DNA to identify the fetal genotype in pregnant women who are at risk of having hemoglobin Bart hydrops fetalis in a large-scale study. STUDY DESIGN:In total, 192,173 couples from 30 hospitals were enrolled in our study and 878 couples were recruited, among whom both the pregnant women and their husbands were detected to be carriers of Southeast Asian type (-/αα) of α-thalassemia. Prenatal diagnosis was performed by chorionic villus sampling, amniocentesis, or cordocentesis using gap-polymerase chain reaction considered as the golden standard. RESULTS:As a result, we found that the sensitivity and specificity of our noninvasive method were 98.81% and 94.72%, respectively, in the training set as well as 100% and 99.31%, respectively, in the testing set. Moreover, our method could identify all of 885 maternal samples with the Southeast Asian carrier and 36 trisomy samples with 100% of sensitivity in T13, T18, and T21 and 99.89% (1 of 917) and 99.88% (1 of 888) of specificity in T18 and T21, respectively. CONCLUSION:Our method opens the possibility of early screening for maternal genotyping of α-thalassemia, fetal aneuploidies in chromosomes 13/18/21, and hemoglobin Bart hydrops fetalis detection in 1 tube of maternal plasma.

影响因子:1.74
发表时间:2020-02-01
DOI:10.1177/1049909119868657
作者列表:["Suarez ML","Schlaeger JM","Angulo V","Shuey DA","Carrasco J","Roach KL","Ezenwa MO","Yao Y","Wang ZJ","Molokie RE","Wilkie DJ"]

METHODS: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.

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发表时间:2020-01-01
DOI:10.1093/ajcp/aqz108
作者列表:["Mukherjee MB","Colah RB","Mehta PR","Shinde N","Jain D","Desai S","Dave K","Italia Y","Raicha B","Serrao E"]

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