Myeloma Treatment Side Effects and Unmet Patient Needs 2009: Results of An International Comparative Survey Conducted by Myeloma Euronet (ME), the European Network of Myeloma Patient Groups.

Abstract 4900

Recent advances in the treatment of multiple myeloma have increased response rates and treatment outcomes and raised hopes that myeloma may soon be turned into a chronic disease. However, myeloma treatment is often associated with various side effects that can sometimes have a significant impact on the quality of life of myeloma patients and also affect the overall treatment plan. An international comparative survey of myeloma patients and patient relatives and healthcare professionals is conducted to assess perceptions of how myeloma patients are informed about potential side effects of myeloma treatment options, the impact of treatment side effects on a myeloma patient's overall well-being and on the course of myeloma treatment, the satisfaction concerning the management of treatment side effects, potential side effects that myeloma patients don't feel comfortable reporting to their doctor as well as potential reasons for not reporting them, and the satisfaction concerning access to information and support, access to novel treatments, coverage of treatment costs, overall quality of treatment and care, and psycho-social and emotional support. The comparative survey is conducted based on 2 comparable two-page questionnaires, 1 for healthcare professionals and 1 for myeloma patients and patient relatives. The survey consists of 9 multiple-choice and ranking format questions. The questionnaires were developed by ME. They were pre-tested with both professional and patient communities and are available in 6 languages: DE, EN, ES, FR, IT, PL. The survey is distributed by mail or e-mail, it can be taken online via accessing the organisation's web site, and it is conducted on paper at haematological and oncological congresses and patient information days. To date, a total of 272 healthcare professionals from 44 countries and 257 myeloma patients and patient relatives from 21 countries have responded to the survey. Data gathering will continue until mid OCT 2009 and final survey results will be presented at ASH 2009. The survey was made possible through an unrestricted grant from Ortho Biotech, Biopharmaceutical Division of Janssen-Cilag.