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.
Subject(s)
Analgesics/therapeutic use , Neoplasms/complications , Pain/drug therapy , Patient Education as Topic/methods , Analgesics/adverse effects , Analgesics, Opioid/adverse effects , Analgesics, Opioid/therapeutic use , Family , Humans , Information Dissemination , Morphine/adverse effects , Morphine/therapeutic use , Pain/prevention & control , Pain Measurement , Program DevelopmentABSTRACT
In response to the evolution of the information-seeking behaviour of patients and concerns from health professionals regarding cancer patient information, the French National Federation of Comprehensive Cancer Centres (FNCLCC) introduced, in 1998, an information and education program dedicated to patients and relatives, the SOR SAVOIR PATIENT program (SSP). The methodology of this program adheres to established quality criteria regarding the elaboration of patient information. Cancer patient information, developed in this program, is based on clinical practice guidelines produced by the FNCLCC and the twenty French cancer centres, the National League against Cancer, The National Cancer Institute, the French Hospital Federation, the National Oncology Federation of Regional and University Hospitals, the French Oncology Federation of General Hospitals, many learned societies, as well as an active participation of patients, former patients and caregivers. The information and dialogue handbook SOR SAVOIR PATIENT Vivre pendant et après un cancer reporting on the psychological aspects of cancer was worked out and published on the Web in 2005. The guide aims to provide cancer patients with support and advice about the psychological impact of the disease. It provides information on the possible personal consequences of the disease and treatments, in every domain: psychological, emotional, interpersonal, familial or professional. Patients are also advised of the emotional challenges associated with cancer, of the support they may expect at every stage of the disease, from diagnosis to treatment, and of psychological outcome after the disease is over. The document also provides healthcare professionals with a valuable, concise source of validated information on the psychological aspects of cancer, thus facilitating communication between carers and patients. Information provided in the present article has been selected from the information and dialogue handbook SOR SAVOIR PATIENT Vivre pendant et après un cancer. The document addresses the issue of the psychological support made available to the patients during and after the disease. The SOR SAVOIR PATIENT guide can be downloaded from the FNCLCC website at: http://www.fnclcc.fr
Subject(s)
Family , Neoplasms/psychology , Patient Education as Topic/organization & administration , Program Development , France , Guidelines as Topic , Humans , Patient Education as Topic/methodsABSTRACT
In response to the evolution of the information-seeking behaviour of patients and concerns from health professionals regarding cancer patient information, the French National Federation of Comprehensive Cancer Centres (FNCLCC) introduced, in 1998, an information and education program dedicated to patients and relatives,the SOR SAVOIR PATIENT program. The methodology of this program adheres to established quality criteria regarding the elaboration of patient information. Cancer patient information, developed in this program, is based on clinical practice guidelines produced by the FNCLCC and the twenty French regional cancer centres, the National League against Cancer, The National Cancer Institute, the French Hospital Federation, the National Oncology Federation of Regional and University Hospitals,the French Oncology Federation of General Hospitals, many learned societies, as well as an active participation of patients, former patients and caregivers. The handbookSOR SAVOIR PATIENT Cancer and Fatigue is an adapted version of different publications regarding fatigue in oncology. It is meant to provide a basis for the explanationof the disease and to facilitate discussions with the healthcare team. It is available from the FNCLCC (101, rue de Tolbiac, 75013 Paris, Tel. (0033) 1, 01 76 64 78 00,www.fnclcc.fr). This document has been validated at the end of 2005 and published in January 2006. SOR SAVOIR PATIENT guides are systematically updated when new research becomes available. This article is extract from the handbook SOR SAVOIR PATIENT Cancer and Fatigue and concerns the causes and effects of fatigue and how to cope with fatigue. This information allow patients to better understand the causes and effects of fatigue, how to cope fatigue...which represent important patient information needs. This article is meant to inform patients and relatives about the disease and its treatments. It also offers health professionals a synthetic evidence-based patient information source which facilitates discussions with the patient.
Subject(s)
Family , Fatigue/therapy , Neoplasms/complications , Pamphlets , Patient Education as Topic/methods , Activities of Daily Living , Anemia/etiology , Anemia/therapy , Antineoplastic Agents/adverse effects , Exercise , Fatigue/etiology , Fatigue/rehabilitation , France , Guidelines as Topic , Humans , Interpersonal Relations , Neoplasms/therapy , Patient Care Team , Postoperative Complications/etiology , Program Development , Radiotherapy/adverse effects , RestABSTRACT
In response to the evolution of the information-seeking behaviour of patients and concerns from health professionals regarding cancer patient information, the French National Federation of Comprehensive Cancer Centres (FNCLCC) introduced, in 1998, an information and education program dedicated to patients and relatives, the SOR SAVOIR PATIENT program. The methodology of this program adheres to established quality criteria regarding the elaboration of patient information. Cancer patient information, developed in this program, is based on clinical practice guidelines produced by the FNCLCC and the twenty French regional cancer centres, the National League against Cancer, The National Cancer Institute, the French Hospital Federation, the National Oncology Federation of Regional and University Hospitals, the French Oncology Federation of General Hospitals, many learned societies, as well as an active participation of patients, former patients and caregivers. The handbook SOR SAVOIR PATIENT Understanding rectal cancer is an adapted version of the clinical practice guidelines (CPG) Standards, Options and Recommendations for rectal cancer. It is meant to provide a basis for the explanation of the disease and treatments and to facilitate discussions with the healthcare team. It is available from the FNCLCC (101, rue de Tolbiac, 75013 Paris, Tel. (0033) 1 44 23 04 68, www.fnclcc.fr). This document has been validated at the end of 2004 and published in 2005. SOR SAVOIR PATIENT guides are systematically updated when new research becomes available. Information leaflets, extracted from the handbook SOR SAVOIR PATIENT Understanding rectal cancer and published in this edition of the Bulletin du cancer, allow patients to better understand colonoscopy and colostomy, which represent an important patient information need. These articles are meant to inform patients and relatives about the disease and its treatments. It also offers health professionals a synthetic evidence-based patient information source which facilitates discussions with the patient.
Subject(s)
Rectal Neoplasms , Colonoscopy , Colostomy , Family , Humans , Rectal Neoplasms/diagnosis , Rectal Neoplasms/therapyABSTRACT
In response to the evolution of the information-seeking behaviour of patients and concerns from health professionals regarding cancer patient information, the French National Federation of Comprehensive Cancer Centres (FNCLCC) introduced, in 1998, an information and education program dedicated to patients and relatives, the SOR SAVOIR PATIENT program (SSP). The methodology of this program adheres to established quality criteria regarding the elaboration of patient information. Cancer patient information, developed in this program, is based on clinical practice guidelines produced by the FNCLCC and the twenty French regional cancer centres, the National League against Cancer, the French Hospital Federation, the National Oncology Federation of Regional and University Hospitals, the French Oncology Federation of General Hospitals, many learned societies, as well as an active participation of patients, former patients and caregivers. The guidelines, "Standards, Options: Recommendations" (SOR) are used as primary information sources. The handbook SOR SAVOIR PATIENT Understanding positron emission tomography (PET) with [18F]-FDG in clinical oncology, integrally published in this issue of the Bulletin du Cancer, is an adapted version of the clinical practice guidelines (CPG) Standards, Options and Recommendations for positron emission tomography (PET) with [18F]-FDG in clinical oncology. The main objectives of this article are to allow persons affected by cancer and their close relatives to better understand this medical imaging technique and its implementation. This document also offers health professionals a synthetic evidence-based patient information source that should help them communicate that information during the physician-patient encounter. Positron emission tomography (PET) is a scintigraphy technique using a radiotracer, [18F]-fluorodeoxyglucose (abbreviated [18F]-FDG), administered intravenously into the patient's arm. This tracer, similar to glucose (sugar), binds to cancer cells and temporarily emits radiations that can be recorded by a special camera in the PET scanner. PET scanning can be used to obtain complementary information at different stages of the disease, whether for assessing diagnosis, treatment evolution or follow-up. By 2007, in the framework of the government plan against cancer, about seventy-five PET scanners are expected to be installed in France. Twenty-four are currently in use; a similar number is under installation. At the end of this process, all French regions should have at least one PET imaging equipment. The SOR SAVOIR PATIENT guide: Understanding positron emission tomography (PET) with [18F]-FDG in clinical oncology and the integral report of CPG SOR 2003: Standards, Options and Recommendations for positron emission tomography (PET) with [18F]-FDG in clinical oncology can be downloaded from the FNCLCC website: http:\\www.fnclcc.fr.
Subject(s)
Fluorodeoxyglucose F18 , Neoplasms/diagnostic imaging , Patient Education as Topic/methods , Positron-Emission Tomography/methods , Radiopharmaceuticals , Decision Making , Documentation , HumansABSTRACT
The development of good-quality patient information is a major challenge to improve quality of cancer care. The SOR SAVOIR PATIENT program aims to improve patients' understanding of cancer treatment and to facilitate their participation in clinical decisions. This programme develops evidence-based information for cancer patients based on clinical practice guidelines in oncology, the "Standards, Options and Recommendations" (SOR) which are used as primary information sources. "Translation" of SOR guidelines to laymen uses a multidisciplinary approach involving specialists in cancer care, psychologists, linguists and anthropologists. The development actively involves cancer patients using focus group methods, individual interviews and postal surveys. The SOR SAVOIR PATIENT program is conducted by the FNCLCC and the 20 French regional cancer centres, with active participation of specialists (public and private), learned societies and institutions, collaborating in multidisciplinary working groups. The leaflets Understanding scanner and Understanding Magnetic Resonance Imaging available in this edition of Bulletin du Cancer have been developed by a multidisciplinary group (radiologist, oncologist, methodologist, health care practioners, psychologist, linguist) and 30 patients, experienced patients and caregivers. These leaflets stem from a collection of patients documents on radiological examinations (Understanding mammography, Ultrasound, etc.) which have been developed to help patients and caregivers to better understand these examinations.