Recontacting Patients with Updated Genetic Testing Recommendations for Medullary Thyroid Carcinoma and Pheochromocytoma or Paraganglioma

Abstract

Patients believe it is important for physicians to inform them of potentially beneficial developments in genetic testing. However, physician-initiated letters to introduce new information appear inadequate alone in motivating patients to seek additional genetic counseling and testing. Further research is needed regarding optimal methods to notify former patients about new genetic tests and corresponding clinical and ethical implications.

Recontacting patients for multigene panel testing in hereditary cancer: Efficacy and insights

“…Our primary aim was to determine what percent of patients would attend a genetic counseling appointment after being recontacted. Our response rate of 4.27%, which reflects the patients that attended a follow‐up appointment after being contacted about updated testing, is comparable with other recontact efforts mentioned previously, where 3.8% (Hampel, ), 4.5% (Beunders et al, ), and 9.5% (Romero Arenas et al, ) of patients responded to a patient letter by making an appointment or receiving updated genetic testing. Our recontact effort has the largest sample size to date of participants that were recontacted through informational letter and is the first study to look at offering updated genetic testing via multigene panels, which is a situation that broadly applies to all cancer clinics.…”

“…Our recontact effort has the largest sample size to date of participants that were recontacted through informational letter and is the first study to look at offering updated genetic testing via multigene panels, which is a situation that broadly applies to all cancer clinics. This study seems to echo other recent research that demonstrates that provider‐initiated letters to introduce new information about updated genetic testing appear inadequate alone in motivating a large percentage of patients to seek additional genetic counseling and testing (Romero Arenas et al, ).…”

“…Remarkably, we were seeing participants in clinic up until the data collection mark and several patients were scheduled for appointments after the data censoring, which suggests that we did not necessarily capture the complete response rate in our 7‐month period. Other studies have also found that some patients seek additional genetic counseling up to 3 years after recontact is initiated (Romero Arenas et al, ). This suggests a true response rate is difficult to capture in a shorter time frame.…”

“…Last, our response rate does not reflect the patients that may have discussed the letter with their primary care doctor. Interestingly, in a recent study of recontact for updated genetic testing in cancer patients, 29.2% of patients reported discussing the letter with their primary care doctor even though the letter was signed by the genetic service provider (Romero Arenas et al, ). The efficacy of recontact cannot be comprehensively examined without at least considering these scenarios.…”

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

“…Only four participants, of the 41 who took part in the study, had been recontacted by a genetics service (Carrieri et al, 2017a;Dheensa et al, 2017), highlighting the limited empirical evidence base for this practice. Recently, a small number of studies suggested that the majority of individuals recontacted for a variety of conditions have positive attitudes to recontact, although some individuals may be wary of the additional information because of the potential for negative emotions (Bernard, McGillivray, Van Allen, Friedman, & Langlois, 1999;Beunders, Dekker, Haver, Meijers-Heijboer, & Henneman, 2018;Romero Arenas et al, 2018;Sexton, Sahhar, Thorburn, & Metcalfe, 2008). These studies highlight that the experience of recontact is psychologically complex and can lead to ambivalent responses (Carrieri et al, 2017a).…”