Armin R Afshar1, Michael Deiner1, Grant Allen2, Bertil E Damato1,3. 1. Department of Ophthalmology, University of California, San Francisco, San Francisco, CA, USA. 2. Ocular Melanoma Foundation, Washington, DC, USA. 3. Department of Radiation Oncology, University of California, San Francisco, San Francisco, CA, USA.
Abstract
BACKGROUND: Ocular melanomas threaten patients with early death, visual handicap, and loss of the eye. The aims of this study were to identify aspects of care that patients with ocular melanoma considered most important and to determine whether patients felt their needs had been adequately addressed. METHODS: A cross-sectional study including US ocular melanoma patients and their caregivers. An online survey of US ocular melanoma patients was designed and conducted by the Ocular Melanoma Foundation. RESULTS: The cohort included 180 patients with uveal melanoma and 4 with conjunctival melanoma. Median follow-up was 3 years. A third of patients reported that their uveal melanoma had initially been diagnosed as a nevus. Most uveal melanomas were treated with brachytherapy. Almost 50% of patients had no genetic tumor analysis. Screening methods reported most commonly were computed tomography and liver function tests. Metastatic disease developed in 11% of patients. Few patients (13.3%) reported an offer of psychological support. Most dissatisfaction was with lack of advice on financial aspects of care and lack of psychological counseling, with women tending to express more dissatisfaction with care. Many patients complained about the way ophthalmologists delivered bad news to them. CONCLUSIONS: This patients' perspective highlights directions for research, education, and other measures to improve the care of patients with ocular melanoma in the US and elsewhere.
BACKGROUND: Ocular melanomas threaten patients with early death, visual handicap, and loss of the eye. The aims of this study were to identify aspects of care that patients with ocular melanoma considered most important and to determine whether patients felt their needs had been adequately addressed. METHODS: A cross-sectional study including US ocular melanoma patients and their caregivers. An online survey of US ocular melanoma patients was designed and conducted by the Ocular Melanoma Foundation. RESULTS: The cohort included 180 patients with uveal melanoma and 4 with conjunctival melanoma. Median follow-up was 3 years. A third of patients reported that their uveal melanoma had initially been diagnosed as a nevus. Most uveal melanomas were treated with brachytherapy. Almost 50% of patients had no genetic tumor analysis. Screening methods reported most commonly were computed tomography and liver function tests. Metastatic disease developed in 11% of patients. Few patients (13.3%) reported an offer of psychological support. Most dissatisfaction was with lack of advice on financial aspects of care and lack of psychological counseling, with women tending to express more dissatisfaction with care. Many patients complained about the way ophthalmologists delivered bad news to them. CONCLUSIONS: This patients' perspective highlights directions for research, education, and other measures to improve the care of patients with ocular melanoma in the US and elsewhere.
Authors: P Nathan; V Cohen; S Coupland; K Curtis; B Damato; J Evans; S Fenwick; L Kirkpatrick; O Li; E Marshall; K McGuirk; C Ottensmeier; N Pearce; S Salvi; B Stedman; P Szlosarek; N Turnbull Journal: Eur J Cancer Date: 2015-08-13 Impact factor: 9.162
Authors: Laura Hope-Stone; Stephen L Brown; Heinrich Heimann; Bertil Damato; Peter Salmon Journal: Psychooncology Date: 2015-04-14 Impact factor: 3.894
Authors: Annemarie Klingenstein; Christina Samel; Aylin Garip-Kuebler; Siegfried G Priglinger; Paul I Foerster Journal: Clin Ophthalmol Date: 2020-11-09
Authors: Basil K Williams; Jennifer J Siegel; Katherina M Alsina; Lauren Johnston; Amanda Sisco; Kyleigh LiPira; Sara M Selig; Peter G Hovland Journal: Melanoma Manag Date: 2022-09-16
Authors: Rumana N Hussain; Sarah E Coupland; Helen Kalirai; Azzam F G Taktak; Antonio Eleuteri; Bertil E Damato; Carl Groenewald; Heinrich Heimann Journal: Cancers (Basel) Date: 2021-05-08 Impact factor: 6.639