How long do I have? Observational study on communication about life expectancy with advanced cancer patients.

OBJECTIVE: To examine how communication about life expectancy is initiated in consultations about palliative chemotherapy, and what prognostic information is presented. METHODS: Patients with advanced cancer (n=41) with a median life expectancy <1year and oncologists (n=6) and oncologists-in-training (n=7) meeting with them in consultations (n=62) to discuss palliative chemotherapy were included. Verbatim transcripts of audio-recorded consultations were analyzed using MAXqda10. RESULTS: Life expectancy was addressed in 19 of 62 of the consultations. In all cases, patients took the initiative, most often through direct questions. Estimates were provided in 12 consultations in various formats: the likelihood of experiencing a significant event, point estimates or general time scales of "months to years", often with an emphasis on the "years". The indeterminacy of estimates was consistently stressed. Also their potential inadequacy was regularly addressed, often by describing beneficial prognostic predictors for the specific patient. Oncologists did not address the reliability or precision of estimates. CONCLUSION: Oncologists did not initiate talk about life expectancy, they used different formats, emphasized the positive and stressed unpredictability, yet not ambiguity of estimates. PRACTICE IMPLICATIONS: Prognostic communication should be part of the medical curriculum. Further research should address the effect of different formats of information provision.

PUGS: A novel scale to assess perceptions of uncertainties in genome sequencing.

Expectations of results from genome sequencing by end users are influenced by perceptions of uncertainty. This study aimed to assess uncertainties about sequencing by developing, evaluating, and implementing a novel scale. The Perceptions of Uncertainties in Genome Sequencing (PUGS) scale comprised ten items to assess uncertainties within three domains: clinical, affective, and evaluative. Participants (n=535) from the ClinSeq® NIH sequencing study completed a baseline survey that included the PUGS; responses (mean = 3.4/5, SD=0.58) suggested modest perceptions of certainty. A confirmatory factor analysis identified factor loadings that led to elimination of two items. A revised eight-item PUGS scale was used to test correlations with perceived ambiguity (r = -0.303, p < 0.001), attitudinal ambivalence (r = -0.111, p = 0.011), and ambiguity aversion (r = -0.093, p = 0.033). Results support nomological validity. A correlation with the MICRA uncertainty subscale was found among 175 cohort participants who had received results (r = -0.335, p < 0.001). Convergent and discriminant validity were also satisfied in a second sample of 208 parents from the HudsonAlpha CSER Project who completed the PUGS (mean = 3.4/5, SD = 0.72), and configural invariance was supported across the two datasets. As such, the PUGS is a promising scale for evaluating perceived uncertainties in genome sequencing, which can inform interventions to help patients form realistic expectations of these uncertainties.

Health literacy and pap testing in insured women.

Several studies have found a link between health literacy and participation in cancer screening. Most, however, have relied on self-report to determine screening status. Further, until now, health literacy measures have assessed print literacy only. The purpose of this study was to examine the relationship between participation in cervical cancer screening (Papanicolaou [Pap] testing) and two forms of health literacy-reading and listening. A demographically diverse sample was recruited from a pool of insured women in Georgia, Massachusetts, Hawaii, and Colorado between June 2009 and April 2010. Health literacy was assessed using the Cancer Message Literacy Test-Listening and the Cancer Message Literacy Test-Reading. Adherence to cervical cancer screening was ascertained through electronic administrative data on Pap test utilization. The relationship between health literacy and adherence to evidence-based recommendations for Pap testing was examined using multivariate logistic regression models. Data from 527 women aged 40 to 65 were analyzed and are reported here. Of these 527 women, 397 (75 %) were up to date with Pap testing. Higher health literacy scores for listening but not reading predicted being up to date. The fact that health literacy listening was associated with screening behavior even in this insured population suggests that it has independent effects beyond those of access to care. Patients who have difficulty understanding spoken recommendations about cancer screening may be at risk for underutilizing screening as a result.