There is limited knowledge about cancer patients’ experience of uncertainty during genome sequencing (GS) and whether uncertainty contributes to psychological factors such as anxiety and fear of cancer recurrence (FCR) in this context. We aimed to investigate uncertainty in patients with a cancer of likely genetic origin waiting for GS results.
Participants completed questionnaires at baseline (within one month of agreeing to GS; N=381, response rate 92%), and at three (N=332, response rate 83%) and 12 months (N=282, response rate 79%) follow ups. A subset of patients (N=20 at baseline, N=23 at three months, N=24 at 12 months) participated in semi-structured interviews. Interview recruitment continued until data saturation was reached. Transcripts underwent thematic analysis. All data were collected prior to patients receiving results.
Participants had negative attitudes towards uncertainty (M=4.02, SD 0.70) at baseline. Uncertainty about GS did not change significantly from 3 months (M=8.24, SD 7.36) to 12 months (M=7.97, SD 7.57) follow up (t(205)=.579, p=0.563). Greater uncertainty at three months significantly predicted greater FCR at three months, b=0.38 [0.18, 0.58], p=0.000, and at 12 months, b=.31 [.04, .58], p=0.024. Greater uncertainty at 3 months significantly predicted greater worry about GS at three months, b=0.59 [0.40, 0.77], p=0.000. Greater uncertainty at three months b=0.42 [0.15, 0.69], p=0.002, and at 12 months b=0.40 [0.09, 0.70], p=0.010 significantly predicted greater worry about GS at 12 months. Semi-structured interviews revealed that while participants were motivated to pursue GS as a strategy to reduce illness uncertainty, GS generated additional practical, scientific and personal uncertainties. Some uncertainties were consistently present over the 12 months, while others emerged over time.
This study demonstrated the complexity of uncertainty generated by GS for cancer patients and provides further support that uncertainty impacts anxiety and FCR. Thus, addressing uncertainty may ameliorate psychological morbidity.