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Abstract
Background Patients’ prognostic beliefs are known to influence treatment decisions and care received at the end of life. However, the evolution of these beliefs over an extended period of time in patients with metastatic cancer is understudied. We assessed longitudinal changes in prognostic beliefs and investigated their association with patients’ changing health status.
Methods We surveyed a cohort of 600 patients with solid metastatic cancer every 9 months for up to 54 months. At each time-point, we assessed whether patients believed their current treatments would cure them (responses classified as accurate, inaccurate, or uncertain belief) and tested the association between their responses and 1) symptom burden and 2) recent health shock (unplanned hospital admission).
Results Only 29% of patients had accurate prognostic belief at baseline and 24% of patients changed from having accurate to uncertain/inaccurate belief at some point during follow-up. Patients’ prognostic beliefs changed up to 6 times, and on average, at each time-point, 21% of patients changed to an uncertain or inaccurate belief, and 20% changed to an accurate belief. Patients who experienced greater symptom burden were less likely to report inaccurate (Relative Risk Ratio (RRR) = 0.87, 95% CI = [0.84, 0.90]) or uncertain belief (RRR = 0.90 [0.87, 0.92]), while those with a recent health shock were more likely to report inaccurate (RRR=2.83 [1.56, 5.13]) or uncertain belief (RRR=2.42 [1.39, 4.22]), compared to accurate belief. Increase in symptom burden was associated with change towards accurate belief (RRR = 1.77 [1.34, 2.33]), as opposed to no change.
Conclusions Patients’ prognostic beliefs are unstable, change from accurate to inaccurate/uncertain, and vice-versa, and are associated with their changing health status. Findings underscore the need to understand prognostic belief as a dynamically evolving construct and imply that conversations about goals of care must occur regularly to factor in these changes.