Vers la personnalisation des services préventifs en cancer du sein : la perspective des professionnel.les de la santé au Canada

Le cancer du sein est le cancer le plus fréquent chez les femmes au Canada et dans le monde. Autant les programmes de dépistage que les services cliniques réguliers et d'oncogénétique actuellement en place excluent des femmes qui pourraient bénéficier d'interventions préventives en matière de cancer du sein. Or, que la solution soit d'améliorer l'accès et les services offerts ou de proposer des alternatives, comme une approche de stratification du risque, le risque de cancer du sein devra être évalué et communiqué aux femmes pour recommander des moyens de gestion du risque appropriés à leur niveau de risque. Pour étudier ce problème, cette recherche propose d'abord un cadre conceptuel sur le conseil génétique pour le cancer du sein et de ses déterminants. Appuyée par le cadre théorique de la chaîne de valeur des connaissances, la méthode de la scoping review permet de faire un état des connaissances sur les pratiques des professionnel·les de la santé et de conceptualiser le conseil génétique en cancer du sein sous forme de processus comprenant quatre activités (l'évaluation, l'investigation, la communication et la décision), influencé par trois catégories de facteurs liées aux professionnel·les de la santé, aux patientes et à l'environnement. Deuxièmement, cette recherche explore les perceptions de professionnel·les de la santé vis-à-vis la mise en place d'une approche de stratification du risque pour le cancer du sein. Des entrevues semi-structurées, articulées autour des grandes activités du cadre conceptuel développé, ont été réalisées avec des professionnel·les de la santé du Québec. Les 11 thèmes identifiés et intégrés dans un modèle logique distinguent : les participantes potentiellement éligibles (qui?), les activités cliniques (comment?) et les outils associés (quoi?), les facteurs d'acceptabilité (lesquels?) et les effets attendus (pourquoi?). Plusieurs éléments doivent être clarifiés selon les professionnel·les interrogé·es, mais la plupart accueilleraient favorablement la mise en œuvre de cette approche. Finalement, cette recherche distingue les conditions nécessaires et suffisantes à l'adoption des modèles de prédiction du risque pour le cancer du sein : un outil essentiel d'une approche de stratification du risque. Des tests statistiques combinés à une analyse comparative qualitative ont été menés sur les données autorapportées par des professionnel·les de la santé du Canada. Plusieurs conditions et combinaisons de conditions influencent l'adoption de ces modèles, mais les connaissances en génétique, la proximité des services de génétique et le peu d'expérience clinique sont celles qui auraient plus d'impact. En somme, cette recherche propose une analyse des pratiques en conseil génétique pour le cancer du sein à l'aide de la littérature scientifique internationale et explore le degré d'acceptabilité d'une innovation organisationnelle - la stratification du risque - et d'une innovation technologique qui y est intiment reliée - les modèles de prédiction du risque - du point de vue des professionnel·les de la santé du Canada. Ensemble, ces travaux de recherche portent à croire que ce ne sont pas seulement les soins et services de santé offerts aux femmes à risque de cancer du sein qui doivent être personnalisés, mais également les moyens et les stratégies de gestion des connaissances dirigées vers les professionnel·les de la santé et les organisations dans lesquelles ils concourent à créer de la valeur : ici, la santé des femmes.Breast cancer is the most common cancer among women in Canada and worldwide. Both the current screening programs and the regular clinical and oncogenetic services exclude women who would benefit from preventive breast cancer interventions. Whether the solution is to improve access and services or to offer alternatives, such as a risk stratification approach, women's breast cancer risk will need to be assessed and communicated to women to recommend appropriate risk management interventions according to their risk level. To address this issue, this research first proposes a conceptual framework of breast cancer genetic counselling and its determinants. Supported by the theoretical framework of the knowledge value chain, the scoping review method allows to make a state of the knowledge of healthcare professionals' practices and to conceptualize breast cancer genetic counselling as a process comprising four activities (assessment, investigation, communication and decision), influenced by three categories of factors related to healthcare professionals, patients and the environment. Second, this research explores the perceptions of healthcare professionals regarding the implementation of a breast cancer risk stratification approach. Semi-structured interviews, designed around the major activities of the conceptual framework developed, were conducted with healthcare professionals in Québec. The 11 themes identified and integrated into a logic model distinguish: the potential eligible participants (who?), the clinical activities (how?) and their associated tools (what?), some of the factors of acceptability (which?) and expected effects (why?). Several elements need to be clarified according to the healthcare professionals interviewed, but most would welcome the implementation of this approach. Finally, this research identifies the necessary and sufficient conditions for the adoption of breast cancer risk prediction models, an essential tool for a breast cancer risk stratification approach. Statistical tests combined with a qualitative comparative analysis were conducted on self-reported data from Canadian healthcare professionals. Several conditions and combinations of conditions might influence the adoption of these models, but knowledge of genetics, proximity to genetics services and limited clinical experience were found to have the greatest impact. In sum, this project provides an analysis of breast cancer genetic counselling practices using the international scientific literature and explores the acceptability of an organizational innovation - risk stratification - and a closely related technological innovation - risk prediction models - from the perspective of Canadian healthcare professionals. Taken together, these suggest that it is not only the services provided to women at risk of breast cancer that need to be personalized, but also the means and strategies of knowledge management directed at healthcare professionals and the organizations in which they contribute to create value: in this case, women's health

Breast Cancer Risk Estimation and Personal Insurance: A Qualitative Study Presenting Perspectives from Canadian Patients and Decision Makers

Genetic stratification approaches in personalized medicine may considerably improve our ability to predict breast cancer risk for women at higher risk of developing breast cancer. Notwithstanding these advantages, concerns have been raised about the use of the genetic information derived in these processes, outside of the research and medical health care settings, by third parties such as insurers. Indeed, insurance applicants are asked to consent to insurers accessing their medical information (implicitly including genetic) to verify or determine their insurability level, or eligibility to certain insurance products. This use of genetic information may result in the differential treatment of individuals based on their genetic information, which could lead to higher premium, exclusionary clauses or even the denial of coverage. This phenomenon has been commonly referred to as “Genetic Discrimination” (GD). In the Canadian context, where federal Bill S-201, An Act to prohibit and prevent genetic discrimination, has recently been enacted but may be subject to constitutional challenges, information about potential risks to insurability may raise issues in the clinical context. We conducted a survey with women in Quebec who have never been diagnosed with breast cancer to document their perspectives. We complemented the research with data from 14 semi-structured interviews with decision-makers in Quebec to discuss institutional issues raised by the use of genetic information by insurers. Our results provide findings on five main issues: (1) the reluctance to undergo genetic screening test due to insurability concerns, (2) insurers' interest in genetic information, (3) the duty to disclose genetic information to insurers, (4) the disclosure of potential impacts on insurability before genetic testing, and (5) the status of genetic information compared to other health data. Overall, both groups of participants (the women surveyed and the decision-makers interviewed) acknowledged having concerns about GD and reported a need for better communication tools discussing insurability risk. Our conclusions regarding concerns about GD and the need for better communication tools in the clinical setting may be transferable to the broader Canadian context

Toward a Population-Based Breast Cancer Risk Stratification Approach? The Needs and Concerns of Healthcare Providers

Given the expanding knowledge base in cancer genomics, risk-based screening is among the promising avenues to improve breast cancer (BC) prevention and early detection at the population level. Semi-structured interviews were conducted to explore the perceptions of healthcare professionals (HPs) regarding the implementation of such an approach and identify tools that can support HPs. After undertaking an in-depth thematic content analysis of the responses, 11 themes were identified. These were embedded into a logical model to distinguish the potential eligible participants (who?), the main clinical activities (how?) and associated tools (what?), the key factors of acceptability (which?), and the expected effects of the strategy (why?). Overall, it was found that the respondents positively welcomed the implementation of this strategy and agreed on some of the benefits that could accrue to women from tailored risk-based screening. Some important elements, however, deserve clarification. The results also highlight three main conditions that should be met to foster the acceptability of BC risk stratification: respecting the principle of equity, paying special attention to knowledge management, and rethinking human resources to capitalize on the strengths of the current workforce. Because the functioning of BC risk-based screening is not yet well defined, important planning work is required before advancing this organizational innovation, and outstanding issues must be resolved to get HPs on board