Patient and Family Decision Making and Information Disclosure Preferences in the Palliative Care Setting: a Multi-Center Survey in Chile, Guatemala, and U.S.
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 入组人数
- 780
- 试验地点
- 6
- 主要终点
- Differences in Proportions of Preference for Passive Decision Making
研究概览
简要总结
The goal of this research study is to learn about any differences in certain health-related preferences between patients with cancer and their families.
The main preferences being studied are how decisions are made about healthcare, as well as how much information people want to know about cancer.
Specifically, researchers will compare questionnaire and interview data from Hispanic-Americans living in the United States (the M. D. Anderson part of this multicenter study) with Hispanics living in Latin America (in particular, Argentina, Chile, and Guatemala).
详细描述
Study Background:
People from different cultures may have different preferences in the way decisions about their healthcare are made, as well as how much information they may want to know about the diseases they may have. However, patients and families sometimes disagree about these preferences. In this study, researchers want to learn about any differences in healthcare decision-making and information-sharing preferences between patients and their families, among a group of people from different Hispanic backgrounds.
(Please note that the phrase "family member" has been used in this consent form for short, but the definition includes non-family members that you may consider a "significant other").
Screening Procedures:
Participants in this study must also agree to give the name of a family member (a parent, spouse, adult child, sibling, other family member, or a non-family member that you consider a "significant other") that researchers can ask to participate in a separate part of this study that will require signing a separate consent form. (If the person of your choice is not with you at the time of joining the study, he/she may come back to the clinic at your next follow-up visit.)
研究设计
- 研究类型
- Interventional
- 分配方式
- Na
- 干预模型
- Single Group
- 盲法
- None
入排标准
- 年龄范围
- 18 Years 至 —（Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 是
入选标准
- •Patient with advanced cancer (local recurrence or metastatic) at the time of their follow up visit to the outpatient palliative care clinic or at an agreed date after the first visit to the outpatient palliative care clinic.
- •Patient designates a family member who is a patient's parent, spouse, adult child, sibling, other relative, or significant other (any other person defined by the patient as a partner) to answer the family questionnaire.
- •Patient is 18 years of age or older (as the assessment tools used in this study have not been validated in the pediatric population).
- •Patient with normal cognitive status as determined by the interviewer and by her/his ability to understand the nature of the study and consent process.
- •Patient willing to participate in the study and sign informed consent.
- •Family member is 18 years of age or older (as the assessment tools used in this study have not been validated in the pediatric population).
- •Family member with normal cognitive status as determined by the interviewer and by her/his ability to understand the nature of the study and consent process.
- •Family member willing to participate in the study and sign informed consent.
- •All participants in the international centers must be from Argentinian, Chilean, or Guatemalan descendence respectively.
- •All participants in the U.S. must be from self-reported Hispanic descendence, first or second generation immigrants, and reside in the U.S. for at least 5 years.
排除标准
- •Either patient or family member can not complete the assessments independently.
- •Either patient or family member refuses to participate in the study.
结局指标
主要结局
Differences in Proportions of Preference for Passive Decision Making
时间窗: 6 Years
次要结局
未报告次要终点