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      The Patient's Experience of Ocular Melanoma in the US: A Survey of the Ocular Melanoma Foundation

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          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.

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          Author and article information

          Journal
          OOP
          OOP
          10.1159/issn.2296-4657
          Ocular Oncology and Pathology
          S. Karger AG
          2296-4681
          2296-4657
          2018
          September 2018
          08 February 2018
          : 4
          : 5
          : 280-290
          Affiliations
          aDepartment of Ophthalmology, University of California, San Francisco, San Francisco, CA, bOcular Melanoma Foundation, Washington, DC, cDepartment of Radiation Oncology, University of California, San Francisco, San Francisco, CA, USA
          Author notes
          *Armin R. Afshar, MD, MBA, Department of Ophthalmology, University of California, San Francisco, 10 Koret Way, K-304, Box 0730, San Francisco, CA 94143 (USA), E-Mail Armin.Afshar@ucsf.edu
          Author information
          https://orcid.org/0000-0002-2989-7558
          Article
          485189 PMC6170915 Ocul Oncol Pathol 2018;4:280–290
          10.1159/000485189
          PMC6170915
          30320098
          a2d8294d-4625-4546-a005-9120ebdf99f1
          © 2018 S. Karger AG, Basel

          Copyright: All rights reserved. No part of this publication may be translated into other languages, reproduced or utilized in any form or by any means, electronic or mechanical, including photocopying, recording, microcopying, or by any information storage and retrieval system, without permission in writing from the publisher. Drug Dosage: The authors and the publisher have exerted every effort to ensure that drug selection and dosage set forth in this text are in accord with current recommendations and practice at the time of publication. However, in view of ongoing research, changes in government regulations, and the constant flow of information relating to drug therapy and drug reactions, the reader is urged to check the package insert for each drug for any changes in indications and dosage and for added warnings and precautions. This is particularly important when the recommended agent is a new and/or infrequently employed drug. Disclaimer: The statements, opinions and data contained in this publication are solely those of the individual authors and contributors and not of the publishers and the editor(s). The appearance of advertisements or/and product references in the publication is not a warranty, endorsement, or approval of the products or services advertised or of their effectiveness, quality or safety. The publisher and the editor(s) disclaim responsibility for any injury to persons or property resulting from any ideas, methods, instructions or products referred to in the content or advertisements.

          History
          : 04 August 2017
          : 08 November 2017
          Page count
          Figures: 1, Tables: 3, References: 12, Pages: 11
          Categories
          Original Paper

          Vision sciences,Ophthalmology & Optometry,Pathology
          Conjunctival melanoma,Treatment,Uveal melanoma,Counseling,Quality of life,Ocular melanoma

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