Gynecologic cancer screening among women with Lynch syndrome: Information and healthcare access needs.

Abstract

Objectives: Screening recommendations for gynecologic cancers (GC) associated with Lynch syndrome (LS) are diverse. The objectives of this study were to examine among women with LS: 1) psychosocial factors that influence thoughts and choices about GC screening, and 2) information and unmet healthcare access needs when making GC screening decisions.

Methods: This study used a qualitative design. Interviews were analyzed using thematic analysis. Participants were women with LS (N = 20) recruited from Toronto, Canada. Fourteen participants had or were participating in GC screening and six had never undergone screening, however were or would be eligible for screening in the future.

Results: Five main themes were identified: understanding level of risk, women's experiences of GC screening, interactions with the health care system, considerations about risk-reducing surgery, and improving LS care.

Conclusions: Participants had many unmet healthcare needs and lacked information about screening and pain management. Self-advocacy was an important strategy for managing care.

Practice implications: Psychoeducational interventions are important to manage uncertainty associated with LS, increasing social and informational support, and informing health care providers about best practices with this population.