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临床试验/NCT03037021
NCT03037021已完成不适用

Improving Sickle Cell Disease (SCD) Care Using Web-based Guidelines, Nurse Care Managers and Peer Mentors in Primary Care and Emergency Departments in Central North Carolina

Duke University1 个研究点 分布在 1 个国家目标入组 213 人开始时间: 2017年5月31日最近更新:
适应症

试验速览

阶段
不适用
状态
已完成
入组人数
213
试验地点
1
主要终点
Barriers to specialty care as measured by Focus Groups./interviews

研究概览

简要总结

The overall goal of this proposed project is to 1) increase co-management between sickle cell specialists and primary care providers (PCP's); 2) increase the use of hydroxyurea (HU) which prevents Vaso-Occlusive Episode (VOE), EDs and subsequent hospitalizations, and death; 3) identify and link patients not receiving primary or SCD specialty care to care, and 4) shift healthcare use from EDs and hospitalizations to primary and specialty co-management. Many persons with SCD experience a poor quality of life, serious medical complications and frequent painful events that require treatment from SCD specialty care, primary care and emergency department (ED) providers. There are two dominating models of care in the United States; neither are ideal. Many people with SCD have all of their healthcare needs addressed by sickle cell specialists who do not typically provide primary care and are often geographically distant from the patients' home. Other sickle cell patients receive all of their care in EDs. Both models are inadequate and result in an alarmingly high number of ED visits for many patients. Current care models are neither cost efficient nor promoting optimal patient outcomes. To improve outcomes, the investigators will implement a new model of care for SCD using nurse care managers, web based-interactive algorithms, and test if additional patient provided coaching can improve outcomes.

详细描述

To inform the model, the investigators will conduct an initial in-depth multi-level assessment of the barriers to care and implementation of the NHLBI "Evidence-Based Management of Sickle Cell Disease". With barriers and facilitators identified at the patient, provider, healthcare organization and community levels, the investigators will develop another study evaluation interventions that may improve the barriers.

研究设计

研究类型
Observational
观察模型
Other
时间视角
Prospective

入排标准

年龄范围
15 Years 至 45 Years(Child, Adult)
性别
All
接受健康志愿者

入选标准

  • SCD patients in the 31 geographic counties surrounding Duke with genotypes Hemoglobin SS, SC, Sβ° or, Sβ+.
  • and -Parents of 15-20 year old SCD patients in the 31 geographic counties surrounding Duke with genotypes Hemoglobin SS, SC, Sβ° or Sβ+.
  • Healthcare providers of sickle cell patients in the 31 geographic counties surrounding Duke

排除标准

  • Non-English speaking

结局指标

主要结局

Barriers to specialty care as measured by Focus Groups./interviews

时间窗: 60 Minutes after focus group or interview

Qualitative analysis will be used to analyze interviews and focus groups.

Barriers to primary care as measured by Focus Groups./interviews

时间窗: 60 Minutes after focus group or interview

Qualitative analysis will be used to analyze interviews and focus groups.

Barriers to ED care as measured by Survey

时间窗: Approximately 30-45 minutes

Descriptive statistics will be used to summarize the survey data.

Barriers to primary care as measured by Survey

时间窗: Approximately 30-45 minutes

Descriptive statistics will be used to summarize the survey data.

Barriers to ED care as measured by Focus Groups./interviews

时间窗: 60 Minutes after focus group or interview

Qualitative analysis will be used to analyze interviews and focus groups.

Barriers to specialty care as measured by Survey

时间窗: Approximately 30-45 minutes

Descriptive statistics will be used to summarize the survey data.

次要结局

未报告次要终点

研究者

申办方类型
Other
责任方
Sponsor

研究点 (1)

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