Long-term uveal melanoma survivors: measuring their quality of life

Purpose: Patients with uveal melanoma (UM) undergo lifelong follow-up as metastases can occur more than 20 years after diagnosis. Little is known about the quality of life (QoL) of UM survivors over such an extended period. To investigate their QoL, we used various estimating factors. Methods: A cohort of patients diagnosed and treated for UM with regularly scheduled follow-up visits was asked to fill in a European Organization for Research and Treatment of Cancer (EORTC) questionnaire comprised of the EORTC QLQ-C30 and EORTC QLQ-OPT30 modules. An additional open question examined other changes in the patients’ lifestyle since diagnosis. Independent demographic and medical data were collected from patient records. Results: Two hundred and thirty-two of 294 patients agreed to complete the questionnaire. General QoL correlated highly with the eye-related QoL. Statistically significant higher QoL was associated with tumours not involving the ciliary body, and with better best-corrected visual acuity (BCVA). A subgroup of 39% of the patients reported severe disability affecting eye-related tasks. Thirty-three per cent were highly concerned about various aspects of their future health. Patients who underwent enucleation reported lower eye-related QoL and described problems related to body image in response to the open question. Conclusion: General QoL of UM patients is only slightly affected by their malignancy. However, body image and psychosocial adjustment are major issues involved in evaluating QoL. Continuous long-term psychosocial treatment is needed from the time of diagnosis in a subgroup of patients suffering from eye-related disabilities.