Patient‐reported patterns in follow‐up care of metastatic uveal melanoma: A survey in specialized dermato‐oncological centers
Susanne Dugas‐Breit, Markus V. Heppt, Andrea Forschner, Cindy Franklin, Christoffer Gebhardt, Mirjana Ziemer, Ralf Gutzmer, Maximilian Lammer, Konstantin Drexler, Jessica C. Hassel,Summary
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.