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Patients with uveal melanoma have plenty to worry about—loss of vision, pain, loss of the eye, and death from metastatic disease, not to mention all the secondary consequences of these problems. Previously, all we had to do was to remove the threat of metastatic disease by enucleation. Recently, we have been expected to conserve the eye with as much vision as possible. Nowadays, success also depends on how well we are able to restore the patient's peace of mind (and rightly so).
As always, what really matters in the end is that the patient is happy with the result. We have learnt the hard way that expensive technical excellence may be a total waste of precious time and energy if the patient is seriously inconvenienced by metamorphopsia or worried about the possibility of local tumour recurrence. We now appreciate that with a newly diagnosed patient our first priority is to get to know what that patient really wants and needs, what degree of risk that patient would feel comfortable with, and what commitment that patient is prepared to make to achieve a particular goal. It is not simply a question of deciding between enucleation and conservative treatment but more often a matter of selecting between radiotherapy and local resection or between radiotherapy and phototherapy.
Gone are the days when we intuitively selected a treatment, which was then imposed on the patient. Now, quite appropriately, we are expected to involve the patient in the process of treatment selection and to base any decisions on sound scientific evidence. Until recently, when discussing various therapeutic options with our patients, all we had to do was to conjure up in our photographic memories various Kaplan–Meier survival curves depicting actuarial rates of visual loss, local tumour recurrence, enucleation, and metastatic disease. Nowadays, we must also be able to advise our patients on how they are likely to feel after treatment and how they may cope (or otherwise) if things don't quite go according to plan. This task might seem an ordeal to ophthalmologists who are not accustomed to dealing with cancer but to an ocular oncologist it can be quite an uplifting experience to act as a special guide, steering patients through turbulent times towards a new tranquillity.
When considering quality of life, we should increasingly be relying on hard psychological data gained by proper research. A vast number of “instruments” (that is, questionnaires) have been developed to measure how diseases and treatments influence the ways in which patients continue to survive physically, psychologically, and socially. Generic instruments, such as the EORTC QLQ-C30 and the Hospital Anxiety Depression (HAD) score, investigate general factors—that is, tiredness, anxiety, depression, family life, social activities, and financial difficulties. Disease specific instruments focus on particular conditions, such as the VF-14, which was developed to measure visual handicap caused by cataract. There is a tendency to use such “off the shelf” instruments for assessing patients with uveal melanoma.1 2 However, visual function is only one of many important outcomes in patients with this tumour and what is required is a dedicated instrument, tailormade to address the specific symptoms and difficulties caused by this particular disease. Such an instrument must also be shown to be user friendly in different languages and cultures, reliable, and sensitive to change in patient status.3 The Ophthalmic Oncology Group (OOG) of the European Organisation for Research and Treatment of Cancer (EORTC) is currently developing such an instrument. The study involves workers from different countries and is following strict guidelines of the EORTC's Quality of Life Study Group. The OOG questionnaire measures (1) comfort (for example, ocular grittiness, ache, watering, dryness, photophobia, headache); (2) vision (for example, blurring, metamorphopsia, visual field loss, diplopia, photopsia, floaters, interference with fellow eye); (3) specific worries (for example, loss of the eye, local tumour recurrence, metastatic disease, cosmetic appearance, regrets about treatment choice); and (4) visual handicap (for example, reading, driving, walking, pouring tea, etc). Preliminary studies by Damato and Humphreys in a sample of 240 patients with treated uveal melanoma showed reassuringly predictable results, but there were a few surprises. For example, patients were as likely to report fears of local recurrence after enucleation as after conservative therapy. A modified questionnaire is now routinely completed by every patient at each follow up visit and this is proving invaluable in identifying problems, many of which can be alleviated by simple reassurance. Such specific questioning is infinitely better than cheerfully asking “How's life?”, which invariably elicits the polite response, “OK”.
Quality of life studies must be interpreted with due caution. For example, when comparing quality of life after radiotherapy with that after enucleation, it is essential to ask the following questions: Are the samples large enough to recognise a statistical difference if there is one? Did the radiotherapy sample include patients who should really have had enucleation in the first instance? Did the questionnaires ask the right questions? What were the physical outcomes after radiotherapy? How many enucleated patients actually had any choice about their treatment? How applicable would the study be, say, to a young woman, an old man, or a patient with poor vision in the fellow eye? Assuming that the treatment was delivered competently, what could be the cause of poor quality of life after treatment? Could it be an unrelated condition (for example, arthritis), poor treatment selection, inadequate counselling, or a failure to identify and treat psychological problems? To some extent, a quality of life measurement reflects the performance of the entire tumour service and not just the treatments under investigation.
In conclusion, the management of patients with uveal melanoma should improve considerably if ocular symptoms and overall quality of life were measured systematically in all patients at regular intervals after treatment, using an internationally recognised instrument. The MOOD questionnaire described by Foss and colleagues in this issue of the BJO (p 347) will in future be one of many and time will tell which of these will gain widespread acceptance.