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.

Assessing the relationship between patient preferences for recontact after BRCA1 or BRCA2 genetic testing and their monitoring coping style in a Norwegian sample

“…In this study, patients showed a high interest in being recontacted. This is consistent with previous research exploring views of patients in clinical genetics (Carrieri et al, 2017;Dheensa et al, 2017;Griffin et al, 2007;Rasmussen et al, 2019;Romero Arenas et al, 2018). The preferred method for recontact in our study was personal letters containing information relevant to them, which is also found in other studies (Griffin et al, 2007;Rasmussen et al, 2019).…”

“…(2007). In an interview with 16 men with Lynch syndrome who were recontacted with information about a potentially increased risk for prostate cancer, participants reported a low level of emotional distress about being recontacted, and recontact was seen as desirable (Rasmussen et al., 2019). We found that more respondents reported reasons for not wanting recontact than there were respondents who actually did not want recontact.…”

“…(1994) found that the tendency of HMs to be interested in testing is found to be pronounced in certain situations, for example, in situations where they are more likely to exaggerate the severity and seriousness of the threat for both themselves and relatives. Recontact about new cancer risk information can cause little emotional distress to patients when the information is seen as actionable (Rasmussen et al., 2019).…”

“…Our results indicate that having a high monitoring coping style is of less importance to patients' preferences for recontact. An explanation for finding only small differences might be that being recontacted is not thought of as creating a stressful situation (Rasmussen et al, 2019;Romero et al, 2018), and HMs and LMs would therefore not differ much in their preferences. Miller et al (1994) found that…”