Lynch syndrome: barriers to and facilitators of screening and disease management
2011

Understanding Lynch Syndrome: Barriers and Facilitators to Screening

Sample size: 23 publication Evidence: moderate

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)

10.1186/1897-4287-9-8

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