Choroidal melanoma patient views on the importance of treatment characteristics and outcomes, and physicians' information provision in the Netherlands.

Purpose: To identify the treatment characteristics and outcomes that Dutch patients with large or juxtapapillary choroidal melanoma consider important when choosing between enucleation and proton beam therapy (PBT). We further determined to what extent these treatment characteristics and outcomes are discussed with newly diagnosed choroidal melanoma patients.

Methods: Through a literature search, stakeholder interviews and feedback from patients, we identified 15 treatment characteristics and outcomes that patients might consider important for deciding between enucleation and PBT. Using a ranking survey, we selected the seven most important characteristics. Next, we conducted a Swing Weighting (SW) survey among treated and newly diagnosed large or juxtapapillary choroidal melanoma patients to determine the relative weight patients assign to these characteristics for treatment decision-making. Furthermore, we assessed which characteristics and outcomes are discussed in current practice with newly diagnosed choroidal melanoma patients eligible for both enucleation and PBT using audio recordings of consultations.

Results: One hundred sixty-five participants completed the SW survey. The patients found the risk of tumour recurrence and eye loss most important. These were mentioned in 47% and 42% of the 110 audio-recorded consultations, respectively. The two most-often mentioned characteristics were treatment course (96%) and decrease in visual acuity (85%).

Conclusion: Tumour local control and eye preservation matter the most to newly diagnosed choroidal melanoma patients when facing a treatment decision. However, ocular oncologists do not routinely provide this information to patients. The results can be used to align counselling of newly diagnosed patients with choroidal melanoma with what matters most to patients.