How do patients with uveal melanoma experience and manage uncertainty? A qualitative study.

Objectives: Cancer survivors experience uncertainty about the future, which can be distressing. A prognostication tool is available for uveal melanoma survivors, which can provide accurate estimates of life expectancy - a key source of uncertainty. Accurate prognostic information has not previously been available for healthy cancer survivors. The aims of this study were to identify how patients experience prognostic information and how it affects their experience of uncertainty.

Methods: Semi-structured interviews were conducted with 25 healthy survivors of uveal melanoma 6-60 months after treatment (approximately 8-62 months after receiving prognostic information). Data were analysed qualitatively.

Results: Patients did not feel that the prognostic information relieved uncertainty, which still overshadowed their lives. Different prognoses engendered different experiences of uncertainty. Those receiving poor life expectancy estimates reported uncertainties regarding the timing and form of metastases that they were likely to experience, but they also used uncertainty to justify feeling hopeful. Those receiving good prognoses were often unable wholly to accept these. Patients whose test results failed or were intermediate retained their original uncertainties. Patients managed their uncertainties by suppressing thoughts about them and by trusting in the care of clinicians and the health-care system.

Conclusions: Uncertainty in the context of uveal melanoma is a complex and multifaceted experience that is not easily resolved by prognostication. Additional approaches are needed to help patients with the uncertainty that persists despite prognostication.