Survivorship in Lynch Syndrome Families

2015-02-16 21:18:39 | BioPortfolio



Specific Aims:

1. We 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.

a. In both CRC groups, we will evaluate cancer preventive and health behaviors, including lifestyle factors and screening, psychosocial factors, including mood, family functioning, coping style, anxiety, depression, and social resources, and health care system factors, including interactions with health care providers and service utilization.

2. We 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.

a. We will evaluate all of the domains listed above, as well as anticipatory grief, assessment of caregiving responsibilities, and fear of cancer in FDRs of patients with LS-related and sporadic CRC.

3. We 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. We will evaluate the preventive and health behavior of patients who are non-conclusive for Lynch syndrome and their family members. We will examine their screening behavior and will explore how the interaction between the patients and their relatives affects the relatives' screening behavior. We also will examine how these non conclusive LS patients and their family members perceive their risk for LS-related cancers.


Data will be collected primarily using a mailed self-administered questionnaire. A subset of the participants who complete the mailed questionnaire will be recontacted and invited to participate in an in-depth, semi-structured telephone interview.

Qualitative Mailed Questionnaires:

Participants will complete a questionnaire that contains questions about your experiences living with colorectal cancer. The questionnaire should take 45-60 minutes to complete.

Up to 200 colorectal cancer survivors and up to 200 close relatives of colorectal cancer survivors will take part in this portion of the study.

Telephone Interviews:

In the phone interview, you will be asked some questions about your experiences living with colorectal cancer. The phone interview should take 30-45 minutes to complete.

Up to 30 colorectal cancer survivors and up to 30 close relatives of colorectal cancer survivors will take part in this portion of the study.

Study Design

Observational Model: Case-Only, Time Perspective: Prospective


Colorectal Cancer


Telephone Interview, Questionnaire


University of Texas MD Anderson Cancer Center
United States


Active, not recruiting


M.D. Anderson Cancer Center

Results (where available)

View Results


Published on BioPortfolio: 2015-02-16T21:18:39-0500

Clinical Trials [2369 Associated Clinical Trials listed on BioPortfolio]

Formative Study of Tailored Survivor Health Promotion

The overall goal of this study is to explore colorectal cancer patients' concerns and interest about their health and behavior changes post treatment. Investigators will conduct formative...

Colorectal Cancer (CRC) Surveillance Tool: Cognitive and Pilot Testing

The goal of this research study to help develop a tool to assist patients in making decisions about care during treatment for colorectal cancer. Information collected during this study wil...

Influence of Audiovisual Aids in the Preanesthetic Interview

1000 patients will be asked to fill out a questionnaire about preanesthetic visit right after the interview. On a daily randomization the Groups will be assigned to: Group A = face-to-face...

Educational Intervention With or Without Telephone Counseling in Increasing Colorectal Cancer Screening Compliance in Brothers and Sisters of Patients With Colorectal Cancer

RATIONALE: Printed educational materials and counseling by telephone may improve colorectal cancer screening compliance in brothers and sisters of patients with colorectal cancer. PURPOSE...

Multi-Organ Screening Recommendations in Patients With Lynch Syndrome

The purpose of this study is to examine how people with a family history of colon cancer and other related cancers respond to recommendations for cancer screening after genetic counseling....

PubMed Articles [16424 Associated PubMed Articles listed on BioPortfolio]

Online Versus Telephone Methods to Recruit and Interview Older Gay and Bisexual Men Treated for Prostate Cancer: Findings from the Restore Study.

Recently, researchers have faced the challenge of conflicting recommendations for online versus traditional methods to recruit and interview older, sexual minority men. Older populations represent the...

Colorectal Cancer Screening.

This article highlights the importance of colorectal cancer screening in the prevention and early detection of colorectal cancer. Early detection of colorectal cancer is associated with reduced mortal...

Psychosocial well-being of colorectal cancer patients: Nurse-led telephone services improve outcomes.

Progastrin: a potential predictive marker of liver metastasis in colorectal cancer.

Staging of colorectal cancer often fails to discriminate outcomes of patients with morphologically similar tumours that exhibit different clinical behaviours. Data from several studies suggest that th...

Community-Based, Preclinical Patient Navigation for Colorectal Cancer Screening Among Older Black Men Recruited From Barbershops: The MISTER B Trial.

To test the effectiveness of a preclinical, telephone-based patient navigation intervention to encourage colorectal cancer (CRC) screening among older Black men.

Medical and Biotech [MESH] Definitions

Tumors or cancer of the COLON or the RECTUM or both. Risk factors for colorectal cancer include chronic ULCERATIVE COLITIS; FAMILIAL POLYPOSIS COLI; exposure to ASBESTOS; and irradiation of the CERVIX UTERI.

Tumor suppressor genes located in the 5q21 region on the long arm of human chromosome 5. The mutation of these genes is associated with the formation of colorectal cancer (MCC stands for mutated in colorectal cancer).

Tumor suppressor genes located in the 18q21-qter region of human chromosome 18. The absence of these genes is associated with the formation of colorectal cancer (DCC stands for deleted in colorectal cancer). The products of these genes show significant homology to neural cell adhesion molecules and other related cell surface glycoproteins.

A group of autosomal-dominant inherited diseases in which COLON CANCER arises in discrete adenomas. Unlike FAMILIAL POLYPOSIS COLI with hundreds of polyps, hereditary nonpolyposis colorectal neoplasms occur much later, in the fourth and fifth decades. HNPCC has been associated with germline mutations in mismatch repair (MMR) genes. It has been subdivided into Lynch syndrome I or site-specific colonic cancer, and LYNCH SYNDROME II which includes extracolonic cancer.

Self-administered health questionnaire developed to obtain details of the medical history as an adjunct to the medical interview. It consists of 195 questions divided into eighteen sections; the first twelve deal with somatic complaints and the last six with mood and feeling patterns. The Index is used also as a personality inventory or in epidemiologic studies.

More From BioPortfolio on "Survivorship in Lynch Syndrome Families"

Quick Search

Searches Linking to this Trial