Survivorship in Lynch Syndrome Families

NCT01126840 | Completed

• 2 other identifiers: 2010-0160CA57730
• Study Type: observational
• Target: 303
• Locations: 1 country
• Sites: 1

Brief Summary

Objectives: Specific Aims:

1. 1.Researchers will evaluate and compare predictors of health-related quality of life (QOL) among colorectal cancer (CRC) survivors who have Lynch syndrome (LS) with those patients who have sporadic CRC using both quantitative and qualitative methodology.
2. 2.Researchers will compare the experience of first-degree relatives (FDRs) of patients who have LS with that of FDRs of patients who have sporadic CRC using both quantitative and qualitative methodology.
3. 3.Researchers will examine CRC patients from both groups and their FDRs using dyadic analyses in order to evaluate the similarities and differences in their survivorship experience.
4. 4.Researchers will evaluate the preventive and health behavior of patients who are non-conclusive for Lynch syndrome and their family members. They will examine their screening behavior and will explore how the interaction between the patients and their relatives affects the relatives' screening behavior. They also will examine how these non conclusive LS patients and their family members perceive their risk for LS-related cancers.

Conditions

Colorectal Cancer

Keywords

Lynch Syndrome; Families; Quality of life; QOL; First-degree relatives; Questionnaire; Interview

Outcome Measures

Primary Outcomes (1)

• Compare Predictors of Health-Related Quality of Life (QOL) among Colorectal Cancer (CRC) Survivors who have Lynch Syndrome (LS) with patients who have Sporadic CRC

  1 Year

Study Arms (1)

Questionnaire + Telephone Interview

Mailed questionnaire that contains questions about experiences living with colorectal cancer, take 45-60 minutes to complete. The phone interview should take 30-45 minutes to complete.

Behavioral: Telephone Interview; Behavioral: Questionnaire

Interventions

Telephone Interview BEHAVIORAL

The phone interview should take 30-45 minutes to complete.

Also known as: Survey

Questionnaire + Telephone Interview

Questionnaire BEHAVIORAL

Mailed questionnaire that contains questions about experiences living with colorectal cancer, take 45-60 minutes to complete.

Also known as: Survey

Questionnaire + Telephone Interview

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

Colorectal cancer (CRC) patients with Lynch-syndrome related CRC or with sporadic CRC; along with first-degree relatives (FDRs), Siblings or adult children of recruited CRC patients

You may qualify if:

• Colorectal cancer (CRC) patients with Lynch-syndrome related CRC: Diagnosis of CRC
• Colorectal cancer (CRC) patients with sporadic CRC: Diagnosis of CRC
• All First-degree relatives (FDRs): Siblings or adult children of recruited CRC patients
• All Participants: 18 years of age or older
• All Participants: Able to read and speak English
• All Participants: Able to be contacted by mail.
• All Second and Third relatives (SDRs and TDRs): Grandparents, grandchildren, aunts, uncles, nieces, nephews, and first-degree cousins of recruited CRC patients
• IPs with a LS MMR mutation who were seen at MDACC for genetic counseling and testing during 2011-2014.

You may not qualify if:

• \) CRC patients with sporadic CRC: Personal or family history of Lynch syndrome, familial adenomatous polyposis, inflammatory bowel disease or those who have a FDR with CRC

Sponsors & Collaborators

• M.D. Anderson Cancer Center: lead
• National Cancer Institute (NCI): 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

Colorectal Neoplasms; Colorectal Neoplasms, Hereditary Nonpolyposis

Interventions

Interviews as Topic; Surveys and Questionnaires

Condition Hierarchy (Ancestors)

Intestinal Neoplasms; Gastrointestinal Neoplasms; Digestive System Neoplasms; Neoplasms by Site; Neoplasms; Digestive System Diseases; Gastrointestinal Diseases; Colonic Diseases; Intestinal Diseases; Rectal Diseases; Neoplastic Syndromes, Hereditary; Genetic Diseases, Inborn; Congenital, Hereditary, and Neonatal Diseases and Abnormalities; 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

  STUDY CHAIR

Study Design

• Study Type: observational
• Observational Model: CASE ONLY
• Time Perspective: PROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: May 18, 2010
• First Posted: May 20, 2010
• Study Start: June 20, 2010
• Primary Completion: September 19, 2022
• Study Completion: September 19, 2022
• Last Updated: October 20, 2022

Record last verified: 2022-10

Locations

US (1)