探索罕见病患者获得和利用医疗保健之间的网络关系
Wehrli Susanne1,2,3,4, Dwyer Andrew A5,6, Matthias Baumgartner R3,4,7
1Department of Psychosomatics and Psychiatry, University Children's Hospital, University of Zurich, Zurich, Switzerland.
Public health in practice (Oxford, England)
|March 24, 2025
概括
瑞士罕见病患者获得和利用医疗保健是复杂的. 可负担性,医院和全科医生使用是连接访问和利用更好的护理整合的关键.
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
- 医疗保健中的网络分析
背景情况:
- 罕见疾病影响全球4亿人,带来诸如高成本和缺乏协调的护理等挑战.
- 瑞士在为罕见病患者提供足够的医疗保健方面面临着特殊的障碍.
- 了解医疗保健的获取和利用对于改善罕见疾病患者的治疗结果至关重要.
研究的目的:
- 检查瑞士罕见病患者的医疗保健获取和利用之间的关系.
- 确定影响这一群体获得和使用医疗保健的关键因素.
- 为政策和实践提供信息,以便更好地整合罕见疾病护理.
主要方法:
- 在瑞士,对314名罕见病患者进行了横截面调查.
- 使用医疗保健获取感知问卷 (PAHQ).
- 应用网络分析 (预期影响,可预测性,桥梁中心性) 来评估医疗保健获取和利用模式.
主要成果:
- 对PAHQ的可接受性,可用性,充分性和认识分量表现出高的预期影响 (EI) 和可预测性.
- 可访问性和负担能力的EI和可预测性得分较低.
- 医院,私人诊所,全科医生,心理健康专业人员和急诊服务人员表现出高的情绪指数和可预测性;专家和整体提供者得分较低.
- 可负担性,疾病过程,医院和GP利用是访问和利用之间的关键连接器 (升高的桥梁中心性).
结论:
- 网络分析是了解罕见疾病复杂医疗保健系统的宝贵工具.
- 调查结果强调了负担能力和初级/医院护理在连接获取和利用方面的关键作用.
- 政策建议侧重于护理整合,特别是对于不稳定疾病过程的患者.
相关概念视频
01:29Issues And Trends In Healthcare Delivery System
5.5K
The issues and trends in healthcare delivery are constantly changing. The COVID-19 pandemic is one recent issue that wreaked havoc on healthcare systems, causing a shortage of healthcare workers, high demand for medicines and supplies, and increased medical expenditure due to a lack of insurance. Other issues include rising healthcare costs and care fragmentation.
Cost Containment
Payment for healthcare services has historically promoted adoption of costly and often unnecessary or inefficient...
Cost Containment
Payment for healthcare services has historically promoted adoption of costly and often unnecessary or inefficient...
5.5K
01:18Introduction To Health Care Delivery System
2.5K
The healthcare system is constantly changing and complex. Various services are available from different healthcare providers, but gaining access to these services has become challenging for people with limited healthcare insurance. Uninsured people present a challenge to healthcare because they frequently postpone or forego treatment.
The Institute of Medicine (IOM) advocates for a patient-centered, effective, safe, timely, equitable, and effective healthcare system. The National Priorities...
The Institute of Medicine (IOM) advocates for a patient-centered, effective, safe, timely, equitable, and effective healthcare system. The National Priorities...
2.5K
01:26Methods Of Healthcare Delivery System
3.1K
At the different levels of the healthcare system, we see varying methods of healthcare used. These methods include managed care systems, case management, and primary healthcare.
Managed Care System:
The managed care system is designed to control the cost while maintaining the quality of care. The patient's care from admission to discharge is planned by the primary care provider or the case manager, also known as the gatekeeper. In a managed care system, the number of care providers is...
Managed Care System:
The managed care system is designed to control the cost while maintaining the quality of care. The patient's care from admission to discharge is planned by the primary care provider or the case manager, also known as the gatekeeper. In a managed care system, the number of care providers is...
3.1K
02:26Protein Networks
3.9K
An organism can have thousands of different proteins, and these proteins must cooperate to ensure the health of an organism. Proteins bind to other proteins and form complexes to carry out their functions. Many proteins interact with multiple other proteins creating a complex network of protein interactions.
These interactions can be represented through maps depicting protein-protein interaction networks, represented as nodes and edges. Nodes are circles that are representative of a protein,...
These interactions can be represented through maps depicting protein-protein interaction networks, represented as nodes and edges. Nodes are circles that are representative of a protein,...
3.9K
01:15Methods of Documentation VI: Case Management Model
548
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...
548
01:11Genome-wide Association Studies-GWAS
12.2K
Genome-wide association studies or GWAS are used to identify whether common SNPs are associated with certain diseases. Suppose specific SNPs are more frequently observed in individuals with a particular disease than those without the disease. In that case, those SNPs are said to be associated with the disease. Chi-square analysis is performed to check the probability of the allele likely to be associated with the disease.
GWAS does not require the identification of the target gene involved in...
GWAS does not require the identification of the target gene involved in...
12.2K