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[Pain and cancer Information dedicated to cancer patients and relatives]
Ivan Krakowski1, Marie Déchelette, Evelyne Arbiol
1Centre Alexis Vautrin, Vandoeuvre-lès-Nancy.
Abstract:
Patient information is a major challenge for public health. It has become part of the patients' rights, in response to their need for information and involvement in medical decision-making. Since 1998, the French National Federation of Comprehensive Cancer Centres (FNCLCC) has developed an information and education program dedicated to patients and relatives: the SOR SAVOIR PATIENT program. The methodology of the program adheres to the quality criteria established for the elaboration of documents containing patient information. The SOR SAVOIR PATIENT guide Pain and Cancer aims to answer patients' questions regarding cancer specific pain and to help them become actively involved in their care. It was elaborated by a multidisciplinary workgroup, which included methodologists, one linguist, pain specialists and twenty patients and relatives. Patients' information needs and personal experience of pain were assessed using focus groups, semi-structured interviews and questionnaires. Through eight chapters, which can be read in an independent way, Pain and cancer provides key information on the causes, the mechanisms, the evaluation, the prevention and the treatment of pain. The guide also presents advices and practical tools to facilitate the assessment of the pain and the communication between patients and professionals. Finally, this guide aims to overcome ideas such as that morphine is synonymous of end of life or drug addiction, that pain is a sign of aggravation of cancer and that nurses know how to detect the pain. Intended first for the patients and their close relations, Pain and Cancer is also a useful tool for health professionals. Indeed, it presents knowledge based on the most recent recommendations developed for clinical practice. Thanks to a wide distribution of the guide to patients, their families and the professionals, we trust that this guide will facilitate dialogue around pain, and ultimately its care. This article is an abstract of the guide. The complete SOR SAVOIR PATIENT guide can be downloaded from the SOR website at: www.sor-cancer.fr.
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