Data_Sheet_1_Cancer Patient Experience of Uncertainty While Waiting for Genome Sequencing Results.PDF

There is limited knowledge about cancer patients' experiences of uncertainty while waiting for genome sequencing results, and whether prolonged uncertainty contributes to psychological factors in this context. To investigate uncertainty in patients with a cancer of likely hereditary origin while waiting for genome sequencing results, we collected questionnaire and interview data at baseline, and at three and 12 months follow up (prior to receiving results). Participants (N = 353) had negative attitudes towards uncertainty (M = 4.03, SD 0.68) at baseline, and low levels of uncertainty at three (M = 8.23, SD 7.37) and 12 months (M = 7.95, SD 7.64). Uncertainty about genome sequencing did not change significantly over time [t(210) = 0.660, p = 0.510]. Greater perceived susceptibility for cancer [r(348) = 0.14, p < 0.01], fear of cancer recurrence [r(348) = 0.19, p < 0.01], perceived importance of genome sequencing [r(350) = 0.24, p < 0.01], intention to change behavior if a gene variant indicating risk is found [r(349) = 0.29, p < 0.01], perceived ability to cope with results [r(349) = 0.36, p < 0.01], and satisfaction with decision to have genome sequencing [r(350) = 0.52, p < 0.01] were significantly correlated with negative attitudes towards uncertainty at baseline. Multiple primary cancer diagnoses [B = −2.364 [−4.238, −0.491], p = 0.014], lower perceived ability to cope with results [B = −0.1.881 [−3.403, −0.359], p = 0.016] at baseline, greater anxiety about genome sequencing (avoidance) [B = 0.347 [0.148, 0.546], p = 0.0012] at 3 months, and greater perceived uncertainty about genome sequencing [B = 0.494 [0.267, 0.721] p = 0.000] at 3 months significantly predicted greater perceived uncertainty about genome sequencing at 12 months. Greater perceived uncertainty about genome sequencing at 3 months significantly predicted greater anxiety (avoidance) about genome sequencing at 12 months [B = 0.291 [0.072, 0.509], p = 0.009]. Semi-structured interviews revealed that while participants were motivated to pursue genome sequencing as a strategy to reduce their illness and risk uncertainty, genome sequencing generated additional practical, scientific and personal uncertainties. Some uncertainties were consistently discussed over the 12 months, while others emerged over time. Similarly, some uncertainty coping strategies were consistent over time, while others emerged while patients waited for their genome sequencing results. This study demonstrates the complexity of uncertainty generated by genome sequencing for cancer patients and provides further support for the inter-relationship between uncertainty and anxiety. Helping patients manage their uncertainty may ameliorate psychological morbidity.

关于癌症患者在等待基因组测序结果期间的不确定体验，以及长期的不确定是否会导致心理因素的考量，目前认知有限。为探究具有可能遗传起源的癌症患者在等待基因组测序结果期间的不确定性，本研究在基线以及三个月和十二个月随访阶段（在收到结果之前）收集了问卷调查和访谈数据。参与研究的人员（N = 353）在基线时对不确定性持有负面态度（M = 4.03，SD 0.68），在三个月（M = 8.23，SD 7.37）和十二个月（M = 7.95，SD 7.64）时不确定性水平较低。基因组测序的不确定性在时间上没有显著变化[t(210) = 0.660，p = 0.510]。更高的癌症易感感知[r(348) = 0.14，p < 0.01]、癌症复发的恐惧[r(348) = 0.19，p < 0.01]、对基因组测序重要性的感知[r(350) = 0.24，p < 0.01]、如发现风险基因变异则改变行为的意向[r(349) = 0.29，p < 0.01]、应对结果的感知能力[r(349) = 0.36，p < 0.01]以及对进行基因组测序决定的满意度[r(350) = 0.52，p < 0.01]与基线时的负面不确定性态度显著相关。多发性原发性癌症诊断[B = −2.364 [−4.238, −0.491]，p = 0.014]、基线时较低的对结果的应对能力[B = −0.1.881 [−3.403, −0.359]，p = 0.016]、三个月时对基因组测序的更大焦虑（回避）[B = 0.347 [0.148, 0.546]，p = 0.0012]以及三个月时对基因组测序的更大感知不确定性[B = 0.494 [0.267, 0.721] p = 0.000]显著预测了十二个月时对基因组测序的更大感知不确定性。三个月时对基因组测序的更大感知不确定性显著预测了十二个月时对基因组测序的更大焦虑（回避）[B = 0.291 [0.072, 0.509]，p = 0.009]。半结构化访谈揭示，尽管参与者出于减少疾病和风险不确定性的策略而推动进行基因组测序，但基因组测序产生了额外的实践、科学和个人不确定性。一些不确定性在十二个月内持续讨论，而其他不确定性则随时间产生。同样，一些不确定性应对策略在时间上保持一致，而其他策略则在患者等待基因组测序结果时出现。本研究展现了基因组测序为癌症患者产生的不确定性的复杂性，并进一步支持了不确定性与焦虑之间的相互关系。帮助患者管理其不确定性可能有助于减轻心理疾病。