A Social Media Approach to Improve Genetic Risk Communication Phase I

NCT01645904 | Unknown

• 1 other identifier: 2012-0418
• Study Type: observational
• Target: 49
• Locations: 1 country
• Sites: 1

Brief Summary

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.

Conditions

Hereditary Diseases

Keywords

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

Outcome Measures

Primary Outcomes (1)

• Evaluation of Internet-Based Program Among Lynch Syndrome Family Members

  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.

  1 day

Study Arms (3)

Group 1

Patients participate in audiotaped focus group regarding web-based program, and fill out demographics questionnaire.

Behavioral: Audiotaped Focus Group; Behavioral: Demographic Questionnaire

Group 2

Patients come to Behavioral Research and Treatment Center (BRTC) at MD Anderson to use initial version of My Family Garden website. Completion of Website Analysis and MeasureMent Inventory (WAMMI), and demographics questionnaires.

Behavioral: Demographic Questionnaire; Behavioral: Audiotaped Interview; Behavioral: WAMMI Inventory

Group 3

Patients use final version of My Family Garden website, and are interviewed which will be audiotaped. Completion of Website Analysis and MeasureMent Inventory (WAMMI), questionnaire and demographics questionnaire.

Behavioral: Demographic Questionnaire; Behavioral: Audiotaped Interview; Behavioral: WAMMI Inventory

Interventions

Audiotaped Focus Group BEHAVIORAL

Participation in a focus group regarding web-based program designed to improve communication of health and health history information among family members affected by Lynch syndrome.

Group 1

Demographic Questionnaire BEHAVIORAL

Complete questions about demographics (age, race, marital status) and medical history. This visit should take about 1 hour to complete.

Also known as: Surveys

Group 1; Group 2; Group 3

Audiotaped Interview BEHAVIORAL

Group 2: Patients provide feedback regarding initial version of My Family Garden website. Group 3: Patients provide feedback regarding final version of My Family Garden website.

Group 2; Group 3

WAMMI Inventory BEHAVIORAL

Patients complete Website Analysis and MeasureMent Inventory. This visit should take about 90 minutes to complete.

Group 2; Group 3

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

Participants recruited from Lynch syndrome families enrolled in the Human Pedigree Analysis Resource (HPAR), MDACC's hereditary cancer registry.

You may qualify if:

• 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

You may not qualify if:

• \) None

Sponsors & Collaborators

• M.D. Anderson Cancer Center: lead
• Duncan Family Institute: collaborator

Study Sites (1)

University of Texas MD Anderson Cancer Center

Houston, Texas, 77030, United States

Location

Related Links

• University of Texas MD Anderson Cancer Center Website

MeSH Terms

Conditions

Genetic Diseases, Inborn; Colorectal Neoplasms, Hereditary Nonpolyposis

Interventions

Surveys and Questionnaires

Condition Hierarchy (Ancestors)

Congenital, Hereditary, and Neonatal Diseases and Abnormalities; Colorectal Neoplasms; Intestinal Neoplasms; Gastrointestinal Neoplasms; Digestive System Neoplasms; Neoplasms by Site; Neoplasms; Neoplastic Syndromes, Hereditary; Digestive System Diseases; Gastrointestinal Diseases; Colonic Diseases; Intestinal Diseases; DNA Repair-Deficiency Disorders; Metabolic Diseases; Nutritional and Metabolic Diseases

Intervention Hierarchy (Ancestors)

Data Collection; Epidemiologic Methods; Investigative Techniques; Health Care Evaluation Mechanisms; Quality of Health Care; Health Care Quality, Access, and Evaluation; Public Health; Environment and Public Health

Study Officials

• Susan Peterson, MPH, PhD

  M.D. Anderson Cancer Center

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: FAMILY BASED
• Time Perspective: PROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: July 18, 2012
• First Posted: July 20, 2012
• Study Start: February 1, 2013
• Primary Completion: February 1, 2020
• Study Completion: February 1, 2021
• Last Updated: May 28, 2019

Record last verified: 2019-05

Locations

US (1)