Understanding Lynch Syndrome: Barriers and Facilitators to Screening
Author Information
Author(s): Kathy E Watkins, Wayne Christine Y, Fiander Jacqueline J, Meadus Robert J, Esplen Mary Jane, Green Jane S, Ludlow Valerie C, Etchegary Holly A, Parfrey Patrick S
Primary Institution: Centre for Nursing Studies, Eastern Regional Integrated Health Authority, St. John's, NL, Canada
Hypothesis
What factors influence decisions about disease management post-genetic testing for Lynch syndrome?
Conclusion
Individuals with Lynch syndrome often encounter multiple barriers to and facilitators of disease management that go beyond the individual to the provider and health care system levels.
Supporting Evidence
- Participants recognized the importance of screening while being mindful of the challenges of living with high cancer risk.
- Emotional and psychosocial states significantly influenced individuals' ability to adjust to their carrier status.
- Trust in health care providers increased when they were knowledgeable about family cancer history.
- Continuity of care was identified as a significant barrier to effective disease management.
Takeaway
People with Lynch syndrome face many challenges when trying to manage their health, and these challenges can come from themselves, their doctors, and the health care system.
Methodology
Grounded theory approach with individual and small group interviews conducted with individuals from 10 families.
Potential Biases
Participants may have biased perceptions based on personal experiences with the health care system.
Limitations
Small sample size and potential biases in participant recall.
Participant Demographics
23 confirmed carriers (14 female, 9 male) from families with specific genetic mutations.
Digital Object Identifier (DOI)
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