Survivorship in Lynch Syndrome Families

Objectives:

Specific Aims:

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.

a. In both CRC groups, researchers 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. 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.

a. Researchers 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. 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. 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.