Experiences of living with Lynch Syndrome: A reflexive thematic analysis

Abstract

Purpose: Lynch Syndrome is one of the most common hereditary cancer syndromes, arising from DNA mismatch repair. Lynch Syndrome carriers are at increased lifetime risk of developing certain cancers, such as colorectal and endometrial. This increased risk can result in adverse psychological outcomes. The present qualitative study explores the experiences of individuals with Lynch Syndrome when accessing and managing healthcare in the period after learning of their Lynch Syndrome status.

Methods: Twelve interviews were conducted with Lynch Syndrome carriers in Ireland, with recruitment occurring predominantly online through closed social media platforms. This was coordinated by Lynch Syndrome Ireland, a patient representative group. Reflexive thematic analysis was used to analyse the data. There was significant Public and Patient Involvement in this study, with the committee members (N = 2) of Lynch Syndrome Ireland acting on the panel. The involvement of the PPI panel began from initial project idea conception and continued throughout the study.

Results: Lynch Syndrome carriers highlighted the lack of adequate information from medical professionals regarding their diagnosis. Furthermore, participants spoke of the significant lack of knowledge amongst medical professionals about Lynch Syndrome. A theme depicting guilt was also noted regarding passing Lynch Syndrome to their children, and the worry experienced when children underwent genetic testing.

Conclusions: This study highlighted the experiences of having a Lynch Syndrome diagnosis and demonstrates a need for further psychological and medical support for the Lynch Syndrome community, including a clear need for improvements in genetic cancer services in this field.

Keywords: Hereditary cancer; Lynch syndrome; Patient experiences; Qualitative; Thematic analysis.