Quality of Life
Patients with uveal melanoma face many threats: early death, pain, visual handicap, and facial disfigurement, which result in loss of income and independence, with restrictions on occupational, social and leisure activities, and depression.
Quality of life after treatment of uveal melanoma is influenced by the patients' fear or experience of adverse ocular and systemic outcomes as well as their personality, social circumstances, and family support. In the COMS quality of life studies, a significant increase in difficulty for most vision-oriented activities such as driving, near-vision activities, and activities-requiring stereopsis or binocularity has been reported. Although anxiety levels in both enucleation and plaque brachytherapy groups decreased significantly following treatment, patients treated with brachytherapy and anxiety symptoms were less likely to report resolution of symptoms when compared with patients with anxiety treated with enucleation.[80] This was thought to be due to the stress of continued close monitoring for tumor growth in the nonenucleated eyes.
The patient's well-being can be enhanced considerably by professional counseling and emotional support provided by the ocular oncologist. Oncology support teams including nurses and social workers can make an enormous contribution to this aspect of patient care. The authors routinely refer all patients to a health psychologist, consistently receiving good feedback on this service.
Genetic tumor typing has been found to enhance quality of life, not only in patients with a good prognosis but also in those who have a high risk of metastasis.[81] This is because patients find uncertainty more unsettling than a bad prognosis, which empowers them to take all possible steps to improve any chances of survival and to prepare for any eventuality. Patients with a monosomy-3/class 2 melanoma and hence almost inevitable metastasis derive considerable relief from systemic screening, because a normal result reassures them that their next few months of life are unlikely to be disturbed by the onset of metastatic disease.
Patient-reported outcome measures (PROMs) are gaining in popularity due to the development and validation of a growing number of instruments, which measure a wide range of functions. These include the QLQ-C30, developed specifically for patients with an ocular tumor.[82,83]
PROMs should enhance the evaluation of patient care in ocular oncology. For example, plaque and proton beam radiotherapy may be equally effective in achieving local tumor control and conserving vision in a patient with a medial, equatorial choroidal melanoma but only patients undergoing proton beam treatment will develop collateral eyelid damage, with scarring, loss of lashes, madarosis, and troublesome epiphora. Similarly, patients with an iris melanoma are much more likely to suffer from photophobia and cosmetic deficit after iridectomy than after radiotherapy.
PROMs should ideally be collected from all patients indefinitely as a routine procedure. This would enable care to be tailored to individuals and would also provide extensive data for research. Damato and colleagues in Liverpool, UK have done this for >10 years, using patient charts. The new ocular oncology team at UCSF is developing a system using VisionTree, which allows patients to complete questionnaires using their smart phones, personal computers, and tablets. This database is being integrated with the hospital's electronic management records so that PROMs can be correlated with clinical findings.
Int Ophthalmol Clin. 2015;55(1):23-43. © 2015 Lippincott Williams & Wilkins
