The Patient's Journey - Assessing the Time to Final Diagnosis in Patients With Neuroendocrine Tumors (NET) in Western Sweden
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 发起方
- 入组人数
- 20
- 试验地点
- 1
- 主要终点
- Initial symptoms
研究概览
简要总结
"The patient's journey" is an interview based study assessing the patients' experience from the first symptoms to a final diagnosis focusing on patients with small intestinal neuroendocrine tumors.
详细描述
The project focus on patients with small intestinal neuroendocrine tumors (SiNET's) with an incidence of 1-2/100 000 yearly. The primary tumor(s) are often small and symptoms usually arise when the disease has become metastatic with hormonal symptoms and/or symptoms due to local growth. As the tumors grow slowly and the symptoms in many cases are rather diffuse and develops gradually over a long time period there is often a long delay from onset to a final diagnosis both depending on "patient's delay" and "doctor's delay" The aim of the current project is to map and analyze the patient's journey from the first appearance of symptoms to the time point of a final diagnosis and to try to identify factors contributing to a delayed process.
The method is interview based and the interviews will be analyzed through the Design Thinking Methodology
研究设计
- 研究类型
- Observational
- 观察模型
- Cohort
- 时间视角
- Cross Sectional
入排标准
- 年龄范围
- 18 Years 至 —（Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •Patients living in Western Sweden
- •> 18 years of age
- •Performance status 0-3
- •Expected remaining survival of > 6 months
- •Diagnosed with a small intestinal neuroendocrine tumor during 2016-2018
排除标准
- •Not able to read and/or understand Swedish language
- •Dementia/memory loss
- •Performance status >3
结局指标
主要结局
Initial symptoms
时间窗: October 2019
Mapping of patients initial symptoms and their time points through indepths interviews by design thinking methodology
Health care actions
时间窗: October 2019
Mapping of corresponding health care actions and their time points regarding the investigations of symptoms
Reasons for a delayed diagnosis
时间窗: October 2019
Mapping of herdles and delays in reaching a final diagnosis through design thinking methodology analysing the patients symptoms and the corresponding Health care actions
次要结局
- Patients' efforts(October 2019)
研究者
Andreas Hallqvist
Principal investigator
Vastra Gotaland Region