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A Social Media Approach to Improve Genetic Risk Communication Phase I


Phase 1
18 Years
N/A
Open (Enrolling)
Both
Hereditary Diseases

Thank you

Trial Information

A Social Media Approach to Improve Genetic Risk Communication Phase I


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.

You will be given the option of completing the WAMMI and demographics questionnaire at the
BRTC after your session or at your home. If you choose to complete them at home, you will be
provided with a self-addressed, postage-paid envelope so you can mail the questionnaires
back to the study staff.

This visit should take about 90 minutes to complete.

Group 3:

If you are assigned to Group 3, you will use the final version of the My Family Garden
website. This final version will include changes from the web designers after feedback has
been given from the previous groups in this study.

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 the
WAMMI questionnaire and demographics questionnaire described above.

You will be given the option of coming to the BRTC at MD Anderson to use the My Family
Garden computer program or using the program from your home. If you choose to use My Family
Garden from your home, you will be given a secure, password-protected hyperlink via e-mail
to access the program. You will be instructed on how to use the program by the study staff
either in person or over the phone. If you use the program from your home, the study staff
will give the interview over the phone. If you complete the questionnaire at your home,
you will be provided with a self-addressed, postage-paid envelope so you can mail it back to
the study staff.

Whether it is completed at MD Anderson or at home, this visit should last about 90 minutes.

Audiotapes:

All focus groups and interviews will be audiotaped. The audiotapes collected during the
course of this study will be stored in locked file cabinets in a locked office and will be
destroyed after 5 years.

Length of Study Participation:

Your participation in this study will be over after you have completed the study procedures
described above.

This is an investigational study.

Up to 49 participants will be enrolled in this study. All participants will be enrolled at
MD Anderson.


Inclusion Criteria:



1. At least 18 years of age

2. Able to read and speak english

3. Completion of genetic counseling and testing for a Lynch syndrome mutation

4. Persons with positive (i.e., carrier of Lynch syndrome MMR mutation) as well as
indeterminate test results

Exclusion Criteria:

1) None

Type of Study:

Observational

Study Design:

Observational Model: Family-Based, Time Perspective: Prospective

Outcome Measure:

Evaluation of Internet-Based Program Among Lynch Syndrome Family Members

Outcome Description:

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.

Outcome Time Frame:

1 day

Safety Issue:

No

Principal Investigator

Susan Peterson, PHD,MPH

Investigator Role:

Principal Investigator

Investigator Affiliation:

UT MD Anderson Cancer Center

Authority:

United States: Institutional Review Board

Study ID:

2012-0418

NCT ID:

NCT01645904

Start Date:

February 2013

Completion Date:

Related Keywords:

  • Hereditary Diseases
  • Hereditary Diseases
  • Genetic
  • Lynch syndrome
  • Positive or indeterminate test results for Lynch syndrome
  • Social media
  • Internet-based program
  • Questionnaire
  • Survey
  • My Family Garden website
  • Interview
  • Focus group
  • Website Analysis and MeasureMent Inventory
  • WAMMI
  • Genetic Diseases, Inborn

Name

Location

UT MD Anderson Cancer CenterHouston, Texas  77030