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Cancer Patient Experience of Uncertainty While Waiting for Genome Sequencing Results.

ABSTRACT: 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.

SUBMITTER: Bartley N

PROVIDER: S-EPMC8100530 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:BackgroundDiagnostic uncertainty is a pervasive issue in primary care where patients often present with non-specific symptoms early in the disease process. Knowledge about how clinicians communicate diagnostic uncertainty to patients is crucial to prevent associated diagnostic errors. Yet, in-depth research on the interpersonal communication of diagnostic uncertainty has been limited. We conducted an integrative systematic literature review (PROSPERO CRD42020197624, unfunded) to investigate how primary care doctors communicate diagnostic uncertainty in interactions with patients and how patients experience their care in the face of uncertainty.MethodsWe searched MEDLINE, PsycINFO, and Linguistics and Language Behaviour Abstracts (LLBA) from inception to December 2021 for MeSH and keywords related to 'communication', 'diagnosis', 'uncertainty' and 'primary care' environments and stakeholders (patients and doctors), and conducted additional handsearching. We included empirical primary care studies published in English on spoken communication of diagnostic uncertainty by doctors to patients. We assessed risk of bias with the QATSDD quality assessment tool and conducted thematic and content analysis to synthesise the results.ResultsInclusion criteria were met for 19 out of 1281 studies. Doctors used two main communication strategies to manage diagnostic uncertainty: (1) patient-centred communication strategies (e.g. use of empathy), and (2) diagnostic reasoning strategies (e.g. excluding serious diagnoses). Linguistically, diagnostic uncertainty was either disclosed explicitly or implicitly through diverse lexical and syntactical constructions, or not communicated (omission). Patients' experiences of care in response to the diverse communicative and linguistic strategies were mixed. Patient-centred approaches were generally regarded positively by patients.DiscussionDespite a small number of included studies, this is the first review to systematically catalogue the diverse communication and linguistic strategies to express diagnostic uncertainty in primary care. Health professionals should be aware of the diverse strategies used to express diagnostic uncertainty in practice and the value of combining patient-centred approaches with diagnostic reasoning strategies.

Project description:Background and objectivesApproximately 20% of deceased donor kidneys are discarded each year in the United States. Some of these kidneys could benefit patients who are waitlisted. Understanding patient preferences regarding accepting marginal-quality kidneys could help more of the currently discarded kidneys be transplanted.Design, setting, participants, & measurementsThis study uses a discrete choice experiment that presents a deceased donor kidney to patients who are waiting for, or have received, a kidney transplant. The choices involve trade-offs between accepting a kidney today or a future kidney. The options were designed experimentally to quantify the relative importance of kidney quality (expected graft survival and level of kidney function) and waiting time. Choices were analyzed using a random-parameters logit model and latent-class analysis.ResultsIn total, 605 participants completed the discrete choice experiment. Respondents made trade-offs between kidney quality and waiting time. The average respondent would accept a kidney today, with 6.5 years of expected graft survival (95% confidence interval, 5.9 to 7.0), to avoid waiting 2 additional years for a kidney, with 11 years of expected graft survival. Three patient-preference classes were identified. Class 1 was averse to additional waiting time, but still responsive to improvements in kidney quality. Class 2 was less willing to accept increases in waiting time for improvements in kidney quality. Class 3 was willing to accept increases in waiting time even for small improvements in kidney quality. Relative to class 1, respondents in class 3 were likely to be age ≤61 years and to be waitlisted before starting dialysis, and respondents in class 2 were more likely to be older, Black, not have a college degree, and have lower Karnofsky performance status.ConclusionsParticipants preferred accepting a lower-quality kidney in return for shorter waiting time, particularly those who were older and had lower functional status.

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Cancer Patient Experience of Uncertainty While Waiting for Genome Sequencing Results.

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