Search

Marie-Anne Durand,1– 3 Marie Bannier,4 Marie-Anastasie Aim,5,6 Julien Mancini7 1CERPOP, Université de Toulouse, Inserm, Université Toulouse III Paul Sabatier, Toulouse, France; 2The Dartmouth Institute for Health Policy & Clinical Practice, Dartmouth College Lebanon, Lebanon, NH, USA; 3Unisanté, Centre universitaire de médecine générale et santé publique, Lausanne, Switzerland; 4Institut Paoli-Calmettes, Marseille, France; 5AP-HM, Délégation à la Recherche Clinique et à l’Innovation, Marseille, France; 6Aix-Marseille Univ, LPS, Aix-en-Provence, France; 7Aix-Marseille Univ, APHM, INSERM, IRD, ISSPAM, SESSTIM, “Cancer, Biomedicine & Society” Group, Equipe Labellisée LIGUE, Hop Timone, Marseille, FranceCorrespondence: Julien Mancini, SESSTIM (Aix-Marseille Univ, Inserm, IRD) “Cancer, Biomedicine & Society” group, Institut Paoli-Calmettes, 232 Bd Ste Marguerite, BP 156, Marseille Cedex 9, Marseille, 13273, France, Tel +33 491 22 35 01, Email julien.mancini@univ-amu.frPurpose: After a diagnosis of early-stage breast cancer, women of lower socioeconomic position (SEP) report worse outcomes than women of higher SEP. A pictorial conversation aid was shown to improve decision outcomes in controlled contexts. No such intervention existed in France. In Phase 1, our aim was to adapt, for use in France, two pictorial conversation aids for breast cancer surgery and reconstruction. In Phase 2, our aim was to implement them in a regional cancer center serving a diverse population.Patients and Methods: In phase 1, we used iterative qualitative methods to adapt the conversation aids with a convenience sample of patients and health professionals. In phase 2, we tested their implementation using PDSA cycles with volunteer surgeons.Results: In phase 1, we interviewed 10 health professionals and 5 patients to reach thematic data saturation. They found the conversation aids usable and very acceptable (especially patients) and suggested small changes to further simplify the layout and content (including a glossary). In phase 2, three surgeons started the first PDSA cycle, for 4 weeks. Only one additional surgeon agreed to take part in the second cycle. The third cycle was cancelled since no new surgeon agreed to take part. Time was a barrier for 2 out of 4 surgeons, potentially explaining the difficulty recruiting for the third cycle. The evaluation was otherwise positive. The surgeons found the conversation aids very useful during their consultations and all intended to continue using them in the future.Conclusion: It was possible to adapt, for use in France, pictorial conversation aids proven to be effective elsewhere. While the adapted conversation aids were deemed usable by health professionals and very acceptable to patients, their implementation using PDSA cycles proved slow.Plain Language Summary: After a diagnosis of early-stage breast cancer, women of lower health literacy and socioeconomic position report worse outcomes than women of higher health literacy and socioeconomic position. Pictorial conversation aids were shown to improve decision outcomes in controlled contexts. No such intervention existed in France. Our aims were to adapt, for use in France, two lower health literacy pictorial conversation aids for breast cancer surgery and reconstruction, and then to implement them in a regional cancer center. Health professionals and patients found the conversation aids usable and very acceptable (especially patients) and suggested changes. Regarding implementation, the evaluation was also positive but time was a barrier for surgeons, and it was difficult to recruit many volunteers to use such conversation aids during their consultations.Keywords: shared decision-making, decision support techniques, breast cancer disparities, lower socioeconomic position

Laurent Chiche,1 Alessandra Brescianini,1 Julien Mancini,2 Hervé Servy,3 Jean-Marc Durand11Service de Médecine Interne, Centre de Compétence pour la prise en charge des Cytopénies Auto-immunes, Hôpital de la Conception, Marseille, 2Service de Santé Publique, Hôpital de la Timone, Marseille, 3Association AIMSU, Maison des Associations, La Ciotat, FranceBackground: Patients with rare diseases often lack information about the disease itself and appropriate health care, leading to poor quality of life. Personal health records provide health information which can then be shared between multiple health care providers. Personal health records may also offer a tool for capturing patients' reported outcomes, thus enhancing their empowerment and improving communication with health care professionals. We conducted a pilot study to evaluate the usability of Sanoia, a freely accessible personal health record, which was customized for patients with the rare disease, idiopathic thrombocytopenic purpura (ITP).Methods: The Sanoia interface was expanded with ITP-specific tools. A prospective study was conducted at the referent center to evaluate the usability of this new interface (referred to here as the “tool”) by patients. Forty-three patients were randomized into groups to use or to not use the tool. Its use was evaluated by a specific questionnaire and by surveying individual patient adherence profiles. Evaluation of health-related quality of life using the ITP patient assessment questionnaire, was performed at baseline and after 1, 3, and 6 months via postal mail.Results: The groups were similar at inclusion in terms of characteristics, including global quality of life. During the study period, the tool was used to update the personal records of 19/28 patients (68%), with a median of two connections to the tool (range 1–12) plus access by various health care professionals (n = 22). In addition, 15/19 (78%) patients used the "personal notes" section at least once. We observed no significant changes in quality of life between patients with or without the tool during the study period.Conclusion: This pilot study demonstrates the good usability of the new customized Sanoia interface for patients with ITP. Additional studies will increase its usability further, and its interface could be adapted for use with other rare chronic diseases.Keywords: electronic personal health records, rare diseases, idiopathic thrombocytopenic purpura

Laurent Chiche1,2, Noémie Jourde3, Guillemette Thomas1, Nathalie Bardin2, Charleric Bornet4, Albert Darque4, Julien Mancini51Department of Internal Medicine, Centre de Compétence Maladies Auto-immunes Systémiques PACA Ouest, 2Laboratory of Immunology, 3Department of Nephrology, 4Department of Pharmacy, Hôpital de la Conception, Marseille; 5Department of Public Health, Hôpital de la Timone, Marseille, FranceAbstract: Belimumab is the first biologic approved for patients with systemic lupus erythematosus (SLE). Belimumab is the first of a new class of drug targeting B cell-stimulating factors or their receptors to reach the market. Its target, BLyS, also known as BAFF (B cell-activating factor from the tumor necrosis factor family), is a type II transmembrane protein that exists in both membrane-bound and soluble forms. Additionally to a robust rational from murine experiments conducted in lupus prone mice, BLyS circulating levels are increased in SLE patients. After the negative results of a Phase II trial, two Phase III trials met their primary endpoints. Some SLE patients are still refractory to the standard options of care or necessitate prolonged high-dose corticotherapy and/or long-term immunosuppressive regimens. However, some experts still feel that the effect of this biologic might not be clinically relevant and blame the use of the new systemic lupus response index as well as the discrepancies between both trials and the noninclusion of the severe form of the disease as nephritis. In this review, we aim to discuss the characteristics of belimumab, critically evaluate the different steps of its development, and consider its future place in the arsenal against SLE, taking into account the patients’ perspectives.Keywords: systemic lupus erythematosus, belimumab, treatment, monoclonal antibodies, adverse effects, BLyS

Understanding how gender norms affect parents' communication of genetic and cancer risk information to their children can enable healthcare professionals to better facilitate cascade genetic testing. We conducted a qualitative study with semi‐structured interviews to determine social factors associated with parents carrying the BRCA1/2 pathogenic variants who communicated cancer prevention practices to their children. Thirty adult carriers (23 women, 7 men) participated in the interviews. All had at least one child aged over 8 years old. Interview topics included their discovery of the variants, their relationship to their body and to the risk of cancer, as well as disclosure to and subsequent communication with their children after testing positive for BRCA1/2. The interviews were analyzed qualitatively, and the major themes identified were identified and compared. We described the roles played by the BRCA1/2 carriers and their partners in communicating cancer prevention practices to their children, from how they managed their own risk of cancer after testing positive, to how they disclosed the risks linked to these pathogenic variants to their children. We also described their involvement in the process of their children going for professional genetic consultation. Gender norms lead women to be more attentive than men to their own health and that of their loved ones. In the context of the transmission of genetic information to children, gender differences in behavior are reinforced by perceptions of the risks of BRCA1/2 variants and women's related health management practices. Cancer prevention is shaped by complex links between gender norms and health management practices. [ABSTRACT FROM AUTHOR]

Inflammatory immune responses are mediated by signaling molecules that are both produced by and recognized across highly heterogeneous cell populations. As such, the study of inflammation using traditional immunostimulants is complicated by paracrine and autocrine signaling, which obscures the origin of a propagating response. To address this challenge, we developed a small-molecule probe that can photosensitize immune cells, thus allowing light-mediated inflammation. This probe was used to control the origin of inflammation using light. Following this motif, inflammation was initiated from fibroblasts or dendritic cells. The contributions of fibroblasts and dendritic cells in initiating inflammation in heterogeneous co-culture are reported, thus providing insights into the future development of vaccines and treatment of inflammation.

We report increased stimulation of dendritic cells via heterodimers of immunostimulants formed at a discrete molecular distance. Many vaccines present spatially organized agonists to immune cell receptors. These receptors cluster suggesting that signaling is increased by spatial organization and receptor proximity, but this has not been directly tested for multiple, unique receptors. In this study we probe the spatial aspect of immune cell activation using heterodimers of two covalently attached immunostimulants.

This paper analyses adolescent active transport (AT) to education in Ireland. In Ireland, there is broad consensus that commuting by walking and cycling can be advantageous to health, learning, and reducing traffic congestion and transport emissions. Thus Irish decision-makers, building on academic literature that claims that AT follows population size and density without considering the placement of schools, frequently propose ‘behavioural change’ among urban children as the primary means to overcome low AT. However decision-makers rarely investigate children's actual behaviour as commuters to education, consult children's commuting data, or consider the impact of school provision on AT. This paper challenges these approaches. Employing data reported by Irish teenagers to Census 2016 and 2011, it shows that AT does not follow population size or density but does follow educational provision including the provision of inclusive schools not segregated by religion, gender, or ability to pay. [ABSTRACT FROM AUTHOR]