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Schrijvers D.,European CanCer Organisation ECCO | Turco M.R.D.,Eusoma | Maddock C.,Tenovus | Marotti L.,Eusoma | Hemelryck F.V.,European CanCer Organisation ECCO
European Journal of Cancer | Year: 2012

A survey was conducted among European Cancer Organisations by the European CanCer Organisation (ECCO) to evaluate initiatives on cancer guideline development. An electronic questionnaire based on the 'Appraisal of Guidelines Research and Evaluation' (AGREE) instrument was sent to different ECCO members and other Scientific European Organisations involved in cancer care. Between April 2010 and July 2010, 30 European Cancer Organisations (ECOs) were contacted and 21 responded to the questionnaire. Of these, 13 were involved in the production of clinical practice guidelines. The majority of the cancer guidelines were treatment or disease-management related (84.6%). The objectives were appropriate clinical care (76.9%), cost containment (7.7%) or both (23.1%). Almost all organisations developed guidelines for their members but more than half were also aimed at policy makers (53.9%). In 69% of cases, the guidelines were developed according to specific instructions by searches in an electronic data base while in 46.2% there was a manual evaluation of the original articles. Disciplines almost always involved in guideline development groups were the medical and nursing specialities, while in some groups, communication specialists were always involved. Patients, as key stakeholders of the guidelines were involved by eight organisations in their development. The median costs for the development of a cancer guideline were between 25000 and 50,000 euro. This survey shows that many European cancer organisations are producing cancer guidelines. Since their development is both costly and time consuming, a coordinated approach should be encouraged. © 2011 Elsevier Ltd. All rights reserved.

Maddock C.,Tenovus | Schrijvers D.,European Cancer Organisation ECCO Brussels | Turco M.R.D.,Eusoma | Marotti L.,Eusoma | Sullivan R.,Health Integrated
ecancermedicalscience | Year: 2011

Background Breast cancer is the most frequently diagnosed cancer and the leading cause of cancer death in females, 5-10% of these breast cancers occur in women because of an inherited mutation. The term 'risk' in relation to familial cancer can have multiple meanings for both clinicians and patients. Failing to identify and address this may impair effective communication and informed decision making and adversely affect the quality of patient care. The aim of this research for the Eurocancercoms project was to explore patients' experience of risk communication in breast cancer and to investigate a mechanism for sharing these experiences using a filmed round-table discussion (RTD). Methods A filmed RTD with six women who had experience of, or some connection with familial breast cancer was conducted. Criteria for inclusion included a willingness and ability to participate in the discussion in English and to be prepared for the discussion to be hosted online with opportunities for others to view and comment. Results The main findings are presented as key themes and issues arising from the RTD. There was consistency in the group on the need for improvements to the risk communication process as a whole and in particular around onward diffusion of information i.e. 'Telling the family'. There were differences regarding 'wanting to know' their genetic status. Conclusions The perception of cancer risk in the narratives stems not only from the way risks are stated, but from family history, personal experiences, cultural norms and beliefs and therefore a multifaceted approach to risk communication addressing these issues is necessary to ensure the patient fully understands the potential risks. There is a balance when attending to patient's information needs, as to what level and amount of information is required by the individual at a particular time and communicators need to be able to tailor information accordingly. Copyright: © the authors; licensee ecancermedicalscience.

Rosselli Del Turco M.,Eusoma | Ponti A.,CPO Piemonte | Bick U.,Charite - Medical University of Berlin | Biganzoli L.,Hospital of Prato | And 18 more authors.
European Journal of Cancer | Year: 2010

To define a set of quality indicators that should be routinely measured and evaluated to confirm that the clinical outcome reaches the requested standards, Eusoma has organised a workshop during which twenty four experts from different disciplines have reviewed the international literature and selected the main process and outcome indicators available for quality assurance of breast cancer care. A review of the literature for evidence-based recommendations have been performed by the steering committee. The experts have identified the quality indicators also taking into account the usability and feasibility. For each of them it has been reported: definition, minimum and target standard, motivation for selection and level of evidence (graded according to AHRO). In overall 17 main quality indicators have been identified, respectively, 7 on diagnosis, 4 on surgery and loco-regional treatment, 2 on systemic treatment and 4 on staging, counselling, follow-up and rehabilitation. Breast Units in Europe are invited to comply with these indicators and monitor them during their periodic audit meetings. © 2010 Elsevier Ltd. All rights reserved.

Biganzoli L.,Sandro Pitigliani Medical Oncology Unit | Wildiers H.,University Hospitals | Oakman C.,Sandro Pitigliani Medical Oncology Unit | Marotti L.,Eusoma | And 11 more authors.
The Lancet Oncology | Year: 2012

As the mean age of the global population increases, breast cancer in older individuals will be increasingly encountered in clinical practice. Management decisions should not be based on age alone. Establishing recommendations for management of older individuals with breast cancer is challenging because of very limited level 1 evidence in this heterogeneous population. In 2007, the International Society of Geriatric Oncology (SIOG) created a task force to provide evidence-based recommendations for the management of breast cancer in elderly individuals. In 2010, a multidisciplinary SIOG and European Society of Breast Cancer Specialists (EUSOMA) task force gathered to expand and update the 2007 recommendations. The recommendations were expanded to include geriatric assessment, competing causes of mortality, ductal carcinoma in situ, drug safety and compliance, patient preferences, barriers to treatment, and male breast cancer. Recommendations were updated for screening, primary endocrine therapy, surgery, radiotherapy, neoadjuvant and adjuvant systemic therapy, and metastatic breast cancer. © 2012 Elsevier Ltd.

Sardanelli F.,University of Milan | Boetes C.,Maastricht University | Borisch B.,University of Geneva | Decker T.,Dietrich Bonhoeffer Clinic Neubrandenburg | And 19 more authors.
European Journal of Cancer | Year: 2010

The use of breast magnetic resonance imaging (MRI) is rapidly increasing. EUSOMA organised a workshop in Milan on 20-21st October 2008 to evaluate the evidence currently available on clinical value and indications for breast MRI. Twenty-three experts from the disciplines involved in breast disease management - including epidemiologists, geneticists, oncologists, radiologists, radiation oncologists, and surgeons - discussed the evidence for the use of this technology in plenary and focused sessions. This paper presents the consensus reached by this working group. General recommendations, technical requirements, methodology, and interpretation were firstly considered. For the following ten indications, an overview of the evidence, a list of recommendations, and a number of research issues were defined: staging before treatment planning; screening of high-risk women; evaluation of response to neoadjuvant chemotherapy; patients with breast augmentation or reconstruction; occult primary breast cancer; breast cancer recurrence; nipple discharge; characterisation of equivocal findings at conventional imaging; inflammatory breast cancer; and male breast. The working group strongly suggests that all breast cancer specialists cooperate for an optimal clinical use of this emerging technology and for future research, focusing on patient outcome as primary end-point. © 2010 Elsevier Ltd. All rights reserved.

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