A Social Media Approach to Improve Genetic Risk Communication Phase I
试验速览
- 阶段
- 不适用
- 入组人数
- 49
- 试验地点
- 1
- 主要终点
- Evaluation of Internet-Based Program Among Lynch Syndrome Family Members
研究概览
简要总结
The goal of this research study is to create an internet-based program designed to improve the communication of health and health history information among family members affected by Lynch syndrome.
详细描述
If you agree to take part in this study, you will be assigned to 1 of 3 groups based on when you joined the study.
Group 1:
If you are assigned to Group 1, you will take part in a focus group where you will be asked what you would want in a web-based program designed to improve the communication of health and health history information among family members affected by Lynch syndrome. You will also fill out a questionnaire with questions about your demographics (age, race, marital status) and your medical history. This visit should take about 1 hour to complete.
Group 2:
If you are assigned to Group 2, you will come to the Behavioral Research and Treatment Center (BRTC) at MD Anderson to use the initial version of the My Family Garden website. My Family Garden is designed to teach new ways of communicating about Lynch Syndrome and about other issues related to the disease (such as risks associated with the disease, etc.). You will be instructed on how to use the program by the study staff. After you use the website, you will have an interview where you will provide feedback on your session. You will be asked questions about your feelings about the website and about any possible improvements that could be made to the website. You will also fill out a questionnaire called the Website Analysis and MeasureMent Inventory (WAMMI) which is designed help rate websites. You will also fill out the demographics questionnaire described above.
研究设计
- 研究类型
- Observational
- 观察模型
- Family Based
- 时间视角
- Prospective
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
- •At least 18 years of age
- •Able to read and speak english
- •Completion of genetic counseling and testing for a Lynch syndrome mutation
- •Persons with positive (i.e., carrier of Lynch syndrome MMR mutation) as well as indeterminate test results
排除标准
- 未提供
结局指标
主要结局
Evaluation of Internet-Based Program Among Lynch Syndrome Family Members
时间窗: 1 day
Quantitative analysis include descriptive statistics summarizing participants' demographic and clinical characteristics. Descriptive statistics calculated for each subscale of Website Analysis and MeasureMent Inventory (WAMMI) and for overall measure. Focus groups and interviews transcribed, coded and analyzed. Responses sorted into categorical and conceptual groups, field notes taken during user testing also used to aid in interpretation of interview data.
次要结局
未报告次要终点