‘I Don't Like Uncertainty, I Like to Know’: How and why uveal melanoma patients consent to life expectancy prognostication

Abstract

Background: Technological advances have led to cancer prognostication that is increasingly accurate but often unalterable. However, a reliable prognosis of limited life expectancy can cause psychological distress. People should carefully consider offers of prognostication, but little is known about how and why they decide on prognostication.Using uveal melanoma (UM) patients, we aimed to identify (i) how and why do people with UM decide to accept prognostication and (ii) alignment and divergence of their decision-making from conceptualizations of a 'well-considered' decision.Methods: UM provides a paradigm to elucidate clinical and ethical perspectives on prognostication, because prognostication is reliable but prognoses are largely nonameliorable. We used qualitative methods to examine how and why 20 UM people with UM chose prognostication. We compared findings to a template of 'well-considered' decisionmaking, where 'well-considered' decisions involve consideration of all likely outcomes.Results: Participants wanted prognostication to reduce future worry about uncertain life expectancy. They spontaneously spoke of hoping for a good prognosis when making their decisions, but largely did not consider the 50% possibility of a poor prognosis. When pressed, they argued that a poor outcome at least brings certainty.Conclusions: While respecting decisions as valid expressions of participants' wishes, we are concerned that they did not explicitly consider the realistic possibility of a poor outcome and how this would affect them. Thus, it is difficult to see their

Associations between empirically proportionate and disproportionate fears of cancer recurrence and anxiety and depression in uveal melanoma survivors: Five‐year prospective study

“…If proportionality of FCR is a risk factor for anxiety or depression then clinicians might focus attention on survivors with fear that is proportionate to risk. This may be particularly pertinent to population-level interventions that use population data to identify and offer tailored services to survivors based on their risk profiles (Brown et al, 2022).…”

“…Patients are informed of their prognostic results, including their prognostic groups, by ocular oncology clinicians. Qualitative analyses suggest that patients understand the life-expectancy implications of their prognoses (Brown et al, 2022;Hope-Stone et al, 2015). A prospective study showed that a poor prognosis precedes moderately elevated anxiety, depression and FCR over five years (Brown et al, 2023).…”