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Men's experiences of recontact about a potential increased risk of prostate cancer due to Lynch Syndrome: “Just another straw on the stack”


Abstract The practice of recontacting patients to provide new health information is becoming increasingly common in clinical genetics, despite the limited research to evidence the patient experience. We explored how men with Lynch Syndrome (LS) understand and experience being recontacted about a potential increased risk of prostate cancer. Sixteen men with LS (Meanage 51 years) were recruited from an Australian screening study to undergo a semi-structured interview. A modified grounded theory approach was used to guide data collection and thematic analysis. Qualitative coding was shared by the research team to triangulate analysis. The practice of recontact was viewed by participants as acceptable and was associated with minimal emotional distress. The majority of men understood that they may be above population risk of prostate cancer, although evidence was still emerging. Men reported high engagement with personal and familial health, including regular screening practices and familial risk communication. Findings suggest that men's carrier status and beliefs about the actionability of the new cancer risk information influence their response to recontact. Recontact practices that include the offer of risk management strategies may lead to improved patient outcomes (e.g., reduced cancer worry and increased health engagement), if perceived as valuable by recipients.

Type Journal
ISBN 1059-7700
Authors Rasmussen, Victoria; Forbes Shepherd, Rowan; Forrest, Laura Elenor; James, Paul A.; Young, Mary-Anne
Responsible Garvan Author Mary-Anne Young
Publisher Name Journal of Genetic Counseling
Published Date 2019-08-01
Published Volume 28
Published Issue 4
Published Pages 750-759
Status Published in-print
DOI 10.1002/jgc4.1110
URL link to publisher's version
OpenAccess link to author's accepted manuscript version