Le transfert des résultats de la recherche en pratique clinique et leur utilisation effective dans les décisions en santé, sont devenus une préoccupation importante et se trouvent au centre des démarches d’amélioration de la qualité des soins. Parmi les outils développés pour y répondre, figurent les recommandations pour la pratique clinique (RPC). L’élaboration de recommandations fiables et valides nécessite l’utilisation d’une approche méthodologique rigoureuse qui combine la revue systématique des résultats de la recherche clinique et le jugement argumenté et explicite d’experts. Garantir l’applicabilité et l’implémentabilité des recommandations implique de s’interroger sur l’acceptabilité des interventions pour les patients, la disponibilité de l’intervention et de l’expertise nécessaire dans le contexte d’utilisation, ainsi que d’identifier les répercussions organisationnelles de leur mise en œuvre. Les RPC représentent une ressource, non-seulement pour les cliniciens, mais également pour les décideurs, les organismes payeurs, la formation médicale et la production d’informations et d’outils d’aide à la décision de qualité à destination des patients.

Transferring results of research into clinical practice and their effective use for decisions in health care have become a major concern and are pivotal to quality improvement. Among the tools that have been developed are clinical practice guidelines (CPG). Developing reliable and valid recommendations requires a rigorous methodological approach that combines a systematic review of the results of clinical research with expert, pondered and explicit judgment. Guaranteeing applicability and implementation of these recommendations implies asking the question of how acceptable the recommendations are for the patient, the availability of the procedure and the expertise necessary in the specific context as well as identification of the organizational impact when put into action. CPG are a source of information not only for physicians but also for policy makers, insurance institutions, continued education programs and production of information for high quality decision making for patients.

Medical practice has undergone a significant evolution over the last decade due to two important factors: (1) the theory and practice of Evidence-Based Medicine (EBM) has become widely established; (2) the relationship between health-care professionals and patients or clients has been profoundly modified. In this review, we discuss the heterogeneity and variability of patient preference and the need to develop a doctor-patient relationship, which facilitates shared decision-making in preference to previous models based on patient information without choice and paternalistic attitudes. Thus, this modern concept of care based on EBM shifts the focus of interest from the disease entity itself to that of the patient suffering from a disease. The patient has a right to information concerning his illness; this information helps the patient to participate in medical decisions through the laying out of clinical practice guidelines. These aspects of the patient's role in care management are illustrated by a national program in the field of oncology which empower the patient in the decisions arrived at by a multi-disciplinary oncology team.

Les pratiques médicales ont connu ces dernières années deux évolutions importantes : d’une part, le développement du concept de l’evidence-based medicine (EBM) et, d’autre part, une modification de la relation entre les professionnels de santé et les malades ou usagers du système de santé. Dans cette mise au point, sont discutées, l’hétérogénéité et la variabilité des préférences des patients ainsi que l’importance de la relation médecin–malade qui devrait correspondre à un modèle de décision partagée plutôt que celui de décision paternaliste ou même de décision informée. Ainsi selon le concept moderne, l’EBM ne s’intéresse plus à la seule maladie mais aussi et surtout au malade. L’information est un droit et permet de faire participer le patient à la décision médicale ainsi qu’à la rédaction de recommandations pour la pratique clinique. Ces aspects du rôle du patient sont illustrés par un exemple en cancérologie qui permet aux patients de participer à la décision arrêtée lors des réunions de concertation pluridisciplinaire.

7603 Background: Clinical Practice Guidelines (CPGs) are increasingly used and regarded as mandatory references for clinical decisions and patient centered cancer care. Discrepancies between recommendations and patient’s preferences have been found to be an important factor of non-compliance with CPGs. To improve the quality and efficiency of cancer CPGs, the French Standards, Options and Recommendations (SOR) program has adapted methods validated in other settings to involve patients in the development of guidelines. Objective: To assess barriers and facilitators of involving patients in the Guideline Development Group (GDG) for a CPG on treatment of early-stage non-small cell lung cancer (NSCLC). Methods: Qualitative study (January 2006 to March 2007) combining 8 direct observations of GDG meetings and 12 semi-directive interviews with the participating patients and experts. Results: The barriers and facilitators indentified could be grouped into four categories (see table). Conclusion: Our observations concerning patient involvement in CPGs were similar to those made in other contexts and permitted to clarify some of the parameters that govern patient involvement in French CPG development. Barriers and facilitators Dimensions Facilitators Barriers Topic of CPG - Patient’s feeling of shame linked with NSCLC - Poor prognosis - Technicity of the topic Method of patient involvement - Recruitment means - Gap between the role of expert assigned to patients and their capability to participate - Training - Support - Time for appropriation - Small numbers of patients Patients’ characteristics - Availability Lack of concern and interest - Strong concern and interest for the topic Interactions within the GDG - Mentioning professional experience Technical analysis and discussion of the scientific data - Listening and explanation by experts - Sense of belonging No significant financial relationships to disclose.

La Fédération nationale des centres de lutte contre le cancer (FNCLCC) et les Centres de lutte contre le cancer (CRLCC), en collaboration avec des partenaires des secteurs publics (CHU, CHG), privé et certaines sociétés savantes ont entrepris, depuis 1993, d’élaborer des recommandations pour la pratique clinique en cancérologie: les Standards, Options et Recommandations (SOR). L’objectif de l’opération SOR est d’améliorer la qualité et l’efficience des soins aux patients atteints de cancer en fournissant aux praticiens une aide à la décision facilement utilisable.

16029 Background: The translation of clinical research knowledge into CPGs involves interpretation of the evidence and value judgments. Patients’ preferences are essential in defining optimal cancer treatment because of the uncertain outcomes and important side effects. Their perspective should therefore be integrated into the development of CPGs (one item of the AGREE instrument). The Standards & Options: Recommandations program (SOR), of the French Federation of Comprehensive Cancer Centres has developed evidence-based cancer CPGs since 1993. To improve the quality and relevance of their CPGs the SOR program decided to develop a comprehensive method to involve cancer patients in the process. Methods: We developed an approach for the French context of cancer CPGs based on 3 inputs 1) Review of the literature from relevant databases and websites. 2) Review of the experiences of the National Institute for Health and Clinical Excellence and the Scottish Intercollegiate Network. 3) Multidisciplinary scientific committee (clinicians, patients, psychologists, sociologists, methodologists and healthy volunteers). Results: The data and the work of the experts allowed to identify the key issues for building a French approach 1) “Patient” includes patients under treatment, former patients, carers, members of a patients’ association, healthy volunteers. Patients are recruited through patients’ associations, clinicians, educational groups, newspaper announcements. 2) The patient plays a significant role in defining the clinical question, particularly the outcomes to be considered as well in the drafting of the CPG. They ensure that a patient perspective complements (and sometimes challenges) the views of professional members of the working group. 3) The major method for involving patients is to have them participate in the working group. 4) To train and support the patients is essential. 5) Informing the working group on the importance of taking into account the patient in the drafting of the CPG is a major issue. 6) A preliminary study demonstrates the feasibility and acceptability of patients’ involvement. Conclusions: This process is valuable and will be implemented in the SOR program. No significant financial relationships to disclose.

Membres du groupe de travail Comité de rédaction M. YCHOU, Oncologue médical, Centre Val d’Aurelle, Montpellier (coordonnateur) G. Gory-Delabaere, Pharmacien, FNCLCC, Paris (méthodologiste) P. BLANC, Gastro-entérologue, CHU Saint-Éloi, Montpellier L. BOSQUET, FNCLCC, Paris (Méthodologiste) J. DUFFOUR, Médecin santé publique, Centre Val d’Aurelle, Montpellier M. GIOVANNINI, Gastro-entérologue, Institut Paoli Calmette, Marseille F. GUILLEMIN, Chirurgien, Centre Alexis Vautrin, Vandœuvre-lès-Nancy C. LEMANSKI, Radiothérapeute, Centre Val d’Aurelle, Montpellier F. MARCHAL, Chirurgien, Centre Alexis Vautrin, Vandœuvre-lès-Nancy B. MASSON, Radiologue, Centre Val d’Aurelle, Montpellier Y. MERROUCHE, Oncologue médical, Institut de Cancérologie de la Loire, Saint-Étienne G. MONGES, Pathologiste, Institut Paoli Calmette, Marseille Comité associé A. ADENIS, Oncologue médical, Centre Oscar Lambret, Lille J.F. BOSSET, Oncologue radiothérapeute, CHU Hôpital Jean Minjoz, Besançon O. BOUCHÉ, Gastro-entérologue, CHR Hôpital Robert Debré, Reims T. CONROY, Oncologue médical, Centre Alexis Vautrin, Vandœuvre-lès-Nancy D. PEZET, Chirurgien, CHU Hôpital Hôtel-Dieu, Clermont-Ferrand J.P. TRIBOULET, Chirurgien, CHRU Lille Hôpital Huriez, Lille Contributeurs P. ARTRU, Gastro-entérologue, Clinique Saint-Jean, Lyon G. AUCLERC, Oncologue médical, CHU Hôpital Pitié-Salpêtrière, Paris P. BALDET, Pathologiste, CHU Hôpital Lapeyronie, Montpellier B. BARREAU, Radiologue, Institut Bergonié, Bordeaux Y. BECOUARN, Oncologue médical, Institut Bergonié, Bordeaux F. BORIE, Chirurgien, Clinique Saint-Éloi, Montpellier A. BOUTAN LAROZE, Oncologue médical, CHU Hôpital Victor Dupouy, Argenteuil J.M. CANARD, Gastro-entérologue, Hôpital européen Georges Pompidou, Paris L. CANY, Oncologue médical, Polyclinique Francheville, Périgueux M.F. CARETTE, Radiologue, Hôpital Tenon, Paris P. CELLIER, Oncologue radiothérapeute, Centre Paul Papin, Angers B. CHAUFFERT, Oncologue médical, Centre Georges-François Leclerc, Dijon O. CLOUET, Oncologue médical, Hôpital Léon Touhladjian, Poissy G. DABOUIS, Oncologue médical, CHU Hôpital Hôtel-Dieu, Nantes F. DE CARVALHO, Chirurgien, Centre Val D’Aurelle, Montpellier B. DETROZ, Oncologue radiothérapeute, CHU Liège, Liège J.B. DUBOIS, Oncologue radiothérapeute, Centre Val d’Aurelle, Montpellier D. ELIAS, Chirurgien, Institut Gustave Roussy, Villejuif P.L. ETIENNE, Oncologue médical, Clinique Armoricaine, Saint-Brieuc J. FRAISSE, Chirurgien, Centre Georges-François Leclerc, Dijon J.P. GERARD, Oncologue radiothérapeute, Centre Antoine Lacassagne, Nice H. JOHANET, Chirurgien, Clinique Sainte-Marie, Pontoise H. LAUCHE, Oncologue radiothérapeute, Clinique Clémentville, Montpellier P. MAINGON, Oncologue radiothérapeute, Centre Georges-François Leclerc, Dijon P.Y. MARCY, Radiologue, Centre Antoine Lacassagne, Nice L. MINEUR, Oncologue radiothérapeute, Clinique Sainte-Catherine, Avignon F. MITHIEUX, Chirurgien, Centre Léon-Bérard, Lyon E. MITRY, Gastro-entérologue, CHU Hôpital Ambroise Paré, Boulogne-Billancourt M. MORO, Oncologue radiothérapeute, Cabinet de Radiologie, Nice H. ORFEUVRE, Oncologue médical, Hôpital Fleyriat, Bourg-en-Bresse R. PALAU, Pathologiste, Centre d’anatomocytopathologie, Toulon J.M. PHELIP, Hépato-gastro-entérologue, CHU, Grenoble J.L. RAOUL, Oncologue médical, Centre Eugène Marquis, Rennes R. REGAL, Oncologue radiothérapeute, Clinique Clémentville, Montpellier A. ROTH, Oncologue médical, Hôpital universitaire de Genève, Genève J.C. SABOURIN, Pathologiste, Institut Gustave Roussy, Villejuif J.P. SUCHAUD, Oncologue radiothérapeute, Hôpital de Roanne, Roanne E. TIRET, Chirurgien, Hôpital Saint-Antoine, Paris P. TROUFLÉAU, Radiologue, Centre Alexis Vautrin, Vandœuvre-lès-Nancy J. VIGNERON, Pharmacien, CHU Hôpital Brabois, Vandœuvre-lès-Nancy J.J. VOIGT, Pathologiste, Institut Claudius Regaud, Toulouse P. WOLFF, Hépato-gastro-entérologue, Cabinet médical gastro-entérologie, Nîmes Comite d’organisation des SOR T. PHILIP, Directeur des SOR, pédiatre, FNCLCC, Paris (Bureau exécutif) B. FERVERS, Directeur adjoint des SOR, oncologue médical, FNCLCC, Paris (Bureau exécutif) P. BEY, Représentant du Conseil d’administration de la FNCLCC, radiothérapeute, FNCLCC, Paris (Bureau exécutif) D. MAIGNE, Délégué général de la FNCLCC, FNCLCC, Paris (Bureau exécutif) A. BATAILLARD, Coordinatrice des SOR spécialistes, médecin généraliste, FNCLCC, Paris (SOR spécialistes) G. GORY-DELABAERE, Méthodologiste, pharmacien, FNCLCC, Paris (SOR spécialistes) L. BOSQUET, Méthodologiste, FNCLCC, Paris (SOR spécialistes) N. FABRE, Méthodologiste, FNCLCC, Paris (SOR spécialistes) S. ROUSMANS, Méthodologiste adjoint, FNCLCC, Paris (SOR spécialistes) E. LUPORSI, Méthodologiste associé, oncologue médical, FNCLCC, Paris (SOR spécialistes) S. THEOBALD, Méthodologiste associé, médecin de santé publique, FNCLCC, Paris (SOR spécialistes) F. FARSI, Référent réseau, médecin de santé publique, FNCLCC, Paris (SOR spécialistes) J. CARRETIER, Responsable des SOR SAVOIR PATIENT, méthodologiste, chargé de mission en santé, FNCLCC, Paris (SOR SAVOIR PATIENT) L. LEICHTNAM-DUGARIN, Méthodologiste, chargée de mission en santé, FNCLCC, Paris (SOR SAVOIR PATIENT) S. BRUSCO, Méthodologiste, FNCLCC, Paris (SOR SAVOIR PATIENT) V. DELAVIGNE, Linguiste, FNCLCC, Paris (SOR SAVOIR PATIENT) E. ESTEVES, Assistante, FNCLCC, Paris (SOR SAVOIR PATIENT) M. HAUGH, Responsable SOR projets internationaux, biochimiste, FNCLCC, Paris (Projets internationaux) V. MILLOT, Assistante de gestion, FNCLCC, Paris (Projets internationaux) S. GUILLO, Documentaliste scientifique, FNCLCC, Paris (Documentation) A.G. GUY, Technicienne documentaliste, FNCLCC, Paris (Documentation) S. DEBUICHE, Responsable administrative, FNCLCC, Paris (service administratif et éditorial) H. BORGES-PANINHO, Chargée de l’édition des documents, FNCLCC, Paris (service administratif et éditorial) D. GOUVRIT, Assistante, FNCLCC, Paris (service administratif et éditorial) L. PRETET, Assistante, FNCLCC, Paris (service administratif et éditorial) E. SABATIER, Secrétaire, FNCLCC, Paris (service administratif et éditorial)

Contexte. - La Federation nationale des centres de lutte contre le cancer (FNCLCC) et les Centres regionaux de lutte contre le cancer (CRLCC), en collaboration avec des partenaires des secteurs public (CHU, CHG), prive et certaines societes savantes ont entrepris, depuis 1993, d'elaborer des recommandations pour la pratique clinique en cancerologie : les « Standards, Options et Recommandations » (SOR). Ces recommandations pour la pratique clinique visent a ameliorer la qualite de la prise en charge des patients atteints de cancer en fournissant aux praticiens une aide a la decision facilement utilisable et actualisee. La methodologie d'elaboration des SOR repose sur une revue et une analyse critique des donnees de la litterature scientifique par un groupe pluridisciplinaire d'experts, permettant de definir, sur la base du niveau de preuve scientifique et du jugement argumente des experts, des « Standards », des « Options » et des « Recommandations ». Avant publication, les SOR sont revus par des experts independants. Objectif. - Mettre a jour les recommandations pour la pratique clinique SOR portant sur l'utilisation de la radiotherapie dans la prise en charge des patients atteints d'osteosarcome en collaboration avec la Societe francaise de lutte contre les cancers de l'enfant et de l'adolescent (SFCE). Methode. - La nouvelle recherche bibliographique a ete effectuee sur la base de donnees Medline®. Elle a porte sur la periode allant de janvier 1992 a octobre 2003. Parallelement, plusieurs sites Internet ont ete consultes en octobre 2003. Resultats. - Les trois principaux standards sont: 1) l'irradiation locale exclusive a visee curative n'est pas indiquee dans le traitement de l'osteosarcome en premiere intention ou dans le traitement des recidives locales operables, excepte en cas de tumeur non accessible a la chirurgie ou de refus de la chirurgie; 2) l'irradiation locale adjuvante prophylactique n'est pas indiquee dans le traitement de l'osteosarcome apres chimiotherapie (neo-adjuvante et/ou adjuvante) et chirurgie complete macro et microscopique, excepte en cas de resection chirurgicale R1 ou R2 non reoperable; 3) l'irradiation pulmonaire totale prophylactique n'est pas indiquee dans le traitement de l'osteosarcome non metastatique. La radiotherapie metabolique a visee antalgique, utilisant le samarium-153-ethylene diamine tetramethylene phosphonate ( 153 Sm-EDTMP) peut etre une option chez le patient atteint d'osteosarcomes metastatiques douloureux ou en recidive avec localisations osseuses non accessibles aux traitements locaux (chirurgie, radiotherapie externe).

CONTEXT:The "Standards, Options and Recommendations" (SOR) project, started in 1993, is a collaboration between the Federation of French Cancer Centres (FNCLCC), the 20 French regional cancer centres, and specialists from French public universities, general hospitals and private clinics. The main objective is the development of clinical practice guidelines to improve the quality of health care and the outcome of cancer patients. The methodology is based on a literature review and critical appraisal by a multidisciplinary group of experts, with feedback from specialists in cancer care delivery.OBJECTIVE:To update the SOR recommendations for the use of radiation therapy in the management of patients with osteosarcoma. This work was performed in collaboration with the French society against cancers in children and adolescent (SFCE).METHODS:Data have been identified by literature search using Medline (from January 1992 to October 2003). In addition several Internet sites were searched in October 2003.RESULTS:The 3 mains standards are: 1) local and exclusive curative irradiation is not indicated as primary treatment for osteosarcoma or for local and operable recurrence, except for lesion in inaccessible sites or if the patient refuses surgery; 2) local and prophylactic adjuvant irradiation is not indicated for the treatment of osteosarcoma after chemotherapy (neoadjuvant and/or adjuvant) and complete macro or microscopic surgery, except for non-operable R1 or R2 surgical resection; 3) whole-lung prophylactic irradiation is not indicated in non-metastatic osteosarcoma. Systemic metabolic radiotherapy for pain treatment, using samarium-153 ethylenediaminetetramethylene phosphonic acid (Sm-153-EDTMP) can be offered to patients with painful metastatic osteosarcoma or in case of recurrent bone sites inaccessible to local therapies (surgery, external irradiation).

CONTEXT The " Standards, Options and Recommendations" (SOR) project, which started in 1993, is a collaboration between the French Federation of Cancer Centres (FNCLCC), the 20 French Regional Cancer Centres, and specialists from French public universities, general hospitals and private clinics. The main objective is the development of clinical practice guidelines to improve the quality of health care and the outcome of cancer patients. OBJECTIVE To develop good practice guidelines for second opinion in anatomic and surgical pathology in oncology, in collaboration with the French Society for Anatomic and Surgical Pathology. METHOD The methodology is based on a literature review and critical appraisal by a multidisciplinary group of experts who define the CPGs using the definitions of the Standards, Options and Recommendations project. Once the guideline has been defined, the document is submitted to independent reviewers for review. RESULTS The working group defined four types of second opinions in anatomic and surgical pathology: personal consultation, inter-institutional consultation, peer review consultation for a scientific survey, intra-departmental consultation in the context of quality control. The main recommendation is that second opinion should respect the patients' rights and the medical ethics code. For each of the four situations defined recommendations have been developed, taking this principle into consideration.

CONTEXT:The "Standards, Options and Recommendations" (SOR) project, which started in 1993, is a collaboration between the French Federation of Cancer Centers (FNCLCC), the 20 French Regional Cancer Centers, and specialists from French public universities, general hospitals and private clinics. The main objective is the development of clinical practice guidelines to improve the quality of health care and the outcome of cancer patients.OBJECTIVE:To update clinical practice guidelines for the assessment of pain in adult or children with cancer in collaboration with the French society for pain study and treatment.METHOD:The methodology is based on a literature review and critical appraisal by a multidisciplinary group of experts who define the CPGs according to the definitions of the Standards, Options and Recommendations project. Once the guideline has been defined, the document is submitted for review by independent reviewers.RESULTS:This article is a summary version of the full document presenting the clinical practice guidelines with algorithms. The main recommendations concern the means used to evaluate pain and its consequences and their use in specific cases (acute or chronic pain, patients able to communicate or not, children under or over 6 years old). Others recommendations were also established concerning the evaluation ofpsychological, social and family context, the evaluation of pain in hospital or at home, in terminal phase patients and for the establishment of a therapeutic strategy and follow-up of patient with pain.

CONTEXT:The "Standards, Options and Recommendations" (SOR) project, started in 1993, is a collaboration between the Federation of French Cancer Centers (FNCLCC), the 20 French cancer centers and specialists from French public university and general hospitals and private clinics. Its main objective is the development of clinical practice guidelines to improve the quality of health care and outcome for cancer patients. The methodology is based on literature review and critical appraisal by a multidisciplinary group of experts, with feedback from specialists in cancer care delivery.OBJECTIVES:To develop, according to the definitions of the Standards, Options and Recommendations, clinical practice guidelines for the management of invasive cervical cancer patients. Methods : Data were identified by searching Medline and the personal reference lists of members of the expert groups, then submitted for review to independent reviewers.RESULTS:This is a synthesis of the Standards, Options and Recommendations elaborated by a working group of experts. Pretherapeutic assessment, classification, diagnosis, therapeutic modalities (surgery, radiotherapy, radiochemotherapy, chemotherapy), therapeutic strategies by disease stage and follow-up are covered. Algorithms for the management of patients are also included.

In 1995 the crude incidence of prostate cancer in France was estimated to be 260 -300 out of 100 000 for men aged between 60 and 70 years and over 500 out of 100 000 for men over 70 years of age.The majority of men (73%) are diagnosed when they are over 70 years old.The standardised incidence increased from 51.8 to 87.1 between 1985 and 1995.It has been estimated that in 1995, 26 474 new cases were diagnosed in France.The use of diagnostic tests has contributed to an increase in the number of patients detected with local or locoregional disease.The crude mortality rate for prostate cancer in France was 32.8 out of 100 000 in 1995, and remains stable.