设计,维护和利用罕见疾病患者登记册的障碍和促进因素:一个范围审查协议
Catherine Stratton1,2, Andrew Taylor3, Menelaos Konstantinidis1,4
1Li Ka Shing Knowledge Institute, St. Michael's Hospital, Unity Health Toronto, Toronto, ON, Canada.
JBI evidence synthesis
|October 21, 2024
概括
识别了罕见疾病患者登记册的障碍和促进因素,以改善其设计,维护和使用. 了解患者合作伙伴,知识用户和研究人员之间的这些因素是优化注册表功能的关键.
科学领域:
- 医疗保健服务研究 医疗服务研究
- 患者倡导 患者倡导
- 数据管理数据管理
背景情况:
- 罕见疾病患者登记册对于了解疾病自然史,干预评估和临床试验招聘至关重要.
- 目前的罕见病患者注册表功能不足于最佳,需要对设计,维护和利用因素有更深入的了解.
- 罕见疾病和患者登记册的定义各不相同,影响一致性和可比性.
研究的目的:
- 确定设计,维护和利用罕见疾病患者登记册的障碍和促进因素.
- 确定这些障碍和促进者是否在患者合作伙伴,知识用户和研究人员之间存在差异.
- 将现有的罕见病定义和罕见病患者登记册映射到地图上.
主要方法:
- 将采用遵循JBI指导方针的范围审查方法.
- 将对健康科学数据库 (MEDLINE,Embase,Cochrane图书馆,PsycINFO,JBI EBP数据库) 和灰色文献 (CADTH灰色问题) 进行全面搜索.
- 两个独立的审查员将选标题,摘要和全文文档,第三名审查员解决分歧. 数据将以描述的方式进行综合,并使用PRIMSA-ScR指南进行报告.
主要成果:
- 该部分在审查完成后将被填写.
- 将介绍有关障碍和促进者的关键发现.
- 将突出利益相关者之间观点的差异.
结论:
- 优化罕见病患者登记需要解决已识别的障碍,并利用促进者.
- 了解利益相关者的具体挑战对于有效的注册表实施和利用至关重要.
- 标准化定义可以提高罕见疾病研究的一致性和影响.
相关概念视频
01:21Barriers to Effective Communication II
3.6K
The barriers to effective communication also include cultural barriers, semantic barriers, gender barriers, and time constraints.
Cultural barriers:
Differences in values, beliefs, religion, knowledge, and tradition can significantly impact communication. Awareness of nonverbal cues is critical, especially when conversing with a patient from a different culture. What appears appropriate in one culture may be inappropriate in another.
Semantic barriers:
As a result of their tendency to use...
Cultural barriers:
Differences in values, beliefs, religion, knowledge, and tradition can significantly impact communication. Awareness of nonverbal cues is critical, especially when conversing with a patient from a different culture. What appears appropriate in one culture may be inappropriate in another.
Semantic barriers:
As a result of their tendency to use...
3.6K
01:15Methods of Documentation VI: Case Management Model
559
The case management model is a multidisciplinary approach that involves healthcare professionals from diverse disciplines, such as physicians, nurses, therapists, social workers, and pharmacists, working collaboratively to address the various needs of patients. Each healthcare professional brings unique expertise and perspectives, contributing to a more comprehensive understanding of the patient's condition and tailoring treatment plans accordingly.
For example, a patient with a chronic...
For example, a patient with a chronic...
559
01:11Purpose of Health Records I
1.2K
The vital purpose of health records is to provide a complete and accurate account of a patient's medical history, including communication, diagnostic and therapeutic orders, care planning, research, and quality review.
Here's a breakdown of how health records serve these purposes:
Here's a breakdown of how health records serve these purposes:
1.2K
01:18Methods of Documentation I: Source-Oriented Records
1.1K
Source-oriented records, or SOR, are medical record-keeping organized by the data source. The SOR system was first developed in the mid-1900s to organize the growing patient data in hospitals and other healthcare facilities.
In an SOR, each discipline involved in patient care maintains a separate medical record section. This record-keeping method enables easy tracking of patient progress and ensures healthcare staff have access to up-to-date information.
Key Attributes include the following:
In an SOR, each discipline involved in patient care maintains a separate medical record section. This record-keeping method enables easy tracking of patient progress and ensures healthcare staff have access to up-to-date information.
Key Attributes include the following:
1.1K
01:21Methods of Documentation III: PIE
1.3K
Problem-intervention-evaluation (PIE) is a systematic approach to documentation used in healthcare settings for clinical decision-making and patient care planning. It is a structured approach to organizing patient data based on problems, interventions, and evaluations. Here's a breakdown of its key features and considerations:
1.3K
01:23Factors Affecting Drug Distribution: Physiological Barriers
178
Drug distribution in the body is intricately regulated by various physiological barriers that control the passage of substances. These include the capillary endothelial barrier, the blood-brain, blood-cerebrospinal fluid, blood-placental, and blood-testis barriers.
The capillary endothelial barrier allows only smaller molecules below 600 Da (Daltons) to pass through. It also restricts drugs like heparin that are bound to blood components, limiting their movement within the bloodstream.
The...
The capillary endothelial barrier allows only smaller molecules below 600 Da (Daltons) to pass through. It also restricts drugs like heparin that are bound to blood components, limiting their movement within the bloodstream.
The...
178