Patient‐reported patterns in follow‐up care of metastatic uveal melanoma: A survey in specialized dermato‐oncological centers

BACKGROUND: Recent therapeutic advances, such as tebentafusp, may prolong survival of metastatic uveal melanoma (mUM) patients. Early detection of metastases during follow-up (FU) may be clinically relevant; however, FU remains non-standardized. PATIENTS AND METHODS: We conducted a prospective, cross-sectional, multicenter survey at nine specialized centers in Germany and Austria. Patients with mUM completed a questionnaire addressing primary tumor diagnosis and treatment, prognostic testing, FU practices, metastasis detection, and patient perceptions. RESULTS: Eighty-seven patients participated (51% male, median age 63 years). Primary melanoma treatments varied: surgery (39%), radiation (32%), or both (28%). Only 38% reported awareness of genetic testing, and more than half could not recall the results. Although 97% were informed about FU care, the intervals varied: 77% had FU every 3 months, 10% every 6 months, and 13% had no regular FU. FU was provided by ophthalmologists (55%), general practitioners (38%), and/or dermato-/oncologists (59%). Metastases were mainly detected through FU (79%), but also via symptoms (12%) or incidentally (10%). Free-text responses highlighted fragmented care and the need for improved coordination and patient education. CONCLUSIONS: This study reveals heterogeneous FU practices and substantial gaps in patient knowledge. In the era of life-prolonging therapies, standardized FU guidelines and improved patient education are urgently needed.