[Expert patients: A place at last]. / Patients experts : une place enfin acquise.

EXPERT PATIENTS: A PLACE AT LAST. The rise of user involvement in the healthcare system raises the question of how to integrate patient partners into care services, and how to create a new profession. France has a legislative framework in place to promote the role of patients and users in the healthcare system. But the question of the training, status and professionalization of these new players remains to be discussed.

PATIENTS EXPERTS: UNE PLACE ENFIN ACQUISE. L'essor de l'engagement des usagers dans le système de santé pose la question de l'intégration des patients partenaires dans les services de soins et de la création d'un nouveau corps de métier. La France dispose d'un dispositif législatif pour favoriser cette place des patients et des usagers dans le système de santé. Mais il reste à discuter la question de la formation, du statut et des modalités de professionnalisation de ces nouveaux acteurs.

Sexual and Emotional Health after Allogeneic Hematopoietic Cell Transplantation: A Comprehensive Review and Guidelines from the Francophone Society of Bone Marrow Transplantation and Cellular Therapy (SFGM-TC).

A person's sexual and emotional life is greatly impacted after allogeneic hematopoietic stem cell transplantation (allo-HSCT). This topic is not addressed very much by patients and caregivers. Physical, endocrine and genital chronic graft versus host disease (cGVHD)-related disorders are multiple and intertwined with psychological disorders. The Francophone Society of Bone Marrow Transplantation and Cellular Therapy (SFGM-TC) has issued recommendations for a better gynecological monitoring of female recipients after allo-HCT. A patient booklet was also offered to patients in the form of questions and answers to facilitate discussions between patients and caregivers and to improve the management of sexual and emotional life after transplant.

[Patient experience, epistemic authority and health challenges: the example of long COVID]. / Expérience patient, autorité épistémique et enjeux sanitaires : l'exemple du Covid long.

Since February 2020, hundreds of thousands of patients have been left with persistant symptoms after their infection. Along with their clinicians, these patients are exposed to a high degree of uncertainty and the urgent need to produce conceptual frameworks aimed at recognising, treating and validating their experience as patients suffering from new and protracted symptoms and witnessing debates as to how these symptoms should be qualified. In this respect, long covid illustrates the need to combine the collective experiential knowledge of patients and scientific knowledge for the benefit of the patients, clinicians and research.

[Sexual and emotional life after allogeneic hematopoietic stem cell transplant: Guidelines and patient booklet from the Francophone Society of Bone marrow Transplant and Cellular therapy (SFGM-TC)]. / Vie sexuelle et affective après allogreffe de cellules souches hématopoïétiques : recommandations et livret patient de la SFGM-TC (Société francophone de greffe de moelle et de thérapie cellulaire).

The Francophone Society of Bone Marrow Transplantation and Cellular Therapy (SFGM-TC) organises annual workshops in an attempt to harmonise clinical practices among different francophone transplantation centres. The SFGM-TC harmonisation workshops aim at establishing practical guidelines, on the one hand, from data from the literature and international recommendations and, on the other hand, by consensus in the absence of formally proven data. The sexual and emotional life of allogeneic hematopoietic stem cells transplanted (HSCT) patients is often very impacted and remains a subject relatively little addressed by patients and caregivers. This article is an update from a previous workshop and is accompanied by a patient booklet, which will be included in the post allograft follow-up workbook published by the SFGM-TC. The purpose of these two documents is to facilitate discussions between patients and caregivers on the subject and to present proposals for follow-up and tools to better manage the sexual and emotional life of allotransplanted patients.

[From one epidemic to the next: how can the learned experience serve to alleviate the psychosocial impact of Covid-19 confinement?] / D'une épidémie à l'autre : quelles leçons apprises sont transférables à la réduction de l'impact psychosocial du confinement lié au Covid-19 ?

The confinement of the population for an indefinite period within the framework of the national French prevention strategy of Covid-19 has a negative psychosocial impact already documented in other countries. In the past, several epidemics have built different strategies of prevention. It is urgent to consider how strategies used in other epidemics might be useful and helpful to manage the quarantine used to prevent the epidemics of COVID-19.

[Experience of parents administering a subcutaneous injection on their child]. / Vécu des parents réalisant une injection sous-cutanée sur leur enfant.

Studies and the experience of caregivers in paediatric hospital departments reveal the difficulties encountered by families and children when the treatment of a chronic disease requires injections to be administered by the family at home. Many treatments in paediatrics are administered by subcutaneous injection which means parents need to perform this procedure on their child, often for organisational reasons. However, injecting medication into one's child is not easy for the parent, even when the technique is mastered.

[The contribution of the fight against AIDS to the health democracy]. / Les apports de la lutte contre le sida à la démocratie en santé.

There is a debate on the place and the role of users in the healthcare system. It is important to remember that the people concerned by AIDS and associations fighting against this pathology have initiated a new type of patient involvement in care and public policies. This could be taken as a model.

[The place of the subject in prevention, the example of chronic diseases]. / La place du sujet en prévention, exemple des maladies chroniques.

The place of the patient and their expertise are essential in the success of prevention actions, as shown by the situations of people facing AIDS, cardiovascular disease and the post-cancer period. Promotional campaigns can help to improve the prevention of risks around chronic diseases. It is also necessary to transform the patient's experience into expertise and ensure it is acknowledged by caregivers and the healthcare system.

[Including recovery in the care pathway after cancer]. / Après un cancer, inclure le rétablissement dans le parcours de soins.

The period after cancer treatments have finished requires personalised services and support, based on the theoretical and clinical concept of recovery. The recovery phase comprises several dimensions: it is not because a patient is in remission or declared medically cured that he or she has recovered.

[Patients' University, illness and learning]. / Université des patients, pathologie et apprentissage.

The Patients' University, a pilot project at the Université Pierre et Marie Curie, in Paris, enables patients-experts to follow a degree program in patient therapeutic education (University Diploma and Master). Recently, graduate patients and patients directly concerned proposed to co-create a new university certificate for treatment pathway coordinators for breast cancer, rounding out the 120-hour university certificate program on healthcare democracy and meeting the recommendations of the new cancer plan.

[Expert patients and caregivers, towards relationships of reciprocity]. / Les patients experts et les soignants, vers des relations de réciprocité.

The increased effectiveness of therapies and the changes to the treatment pathways of chronic patients have given rise to new needs for these patients. They require new types of programmes, including training. They show that these patients can produce knowledge and acquire skills which can be useful for the wider community and can be transferred outside the immediate care environment.

The multinational second Diabetes, Attitudes, Wishes and Needs study: results of the French survey.

AIM: The second Diabetes, Attitudes, Wishes and Needs (DAWN2™) multinational cross-sectional study was aimed at generating insights to facilitate innovative efforts by people with diabetes (PWD), family members (FMs), and health care professionals (HCPs) to improve self-management and psychosocial support in diabetes. Here, the French data from the DAWN2™ study are described. METHODS: In France, 500 PWD (80 with type 1 diabetes [T1] and 420 with type 2 diabetes [T2]), 120 FMs, and 288 HCPs were recruited. The questionnaires assessed the impact of diabetes on quality of life and mood, self-management, attitudes/beliefs, and care/support. RESULTS: Diabetes negatively impacted the emotional well-being of 59% of people with T1 versus 45% of people with T2 (P<0.05) and about half of FMs. A high level of distress was felt by about half of PWD and FMs. About half of HCPs reported assessing depression in their patients. Sixty-two percent of FMs considered managing diabetes to be a burden. Hypoglycemia was a source of concern for 64% of people with T1 and 73% of FMs of insulin users. About two-thirds of non-insulin-medicated people with T2 agreed to start insulin if prescribed, while half of HCPs preferred to delay insulin initiation. A discrepancy between HCPs' perceptions of their interactions with their patients and PWD's recollection of these interactions with regard to patients' personal needs and distress was also observed. CONCLUSION: While distress remains under-assessed by HCPs, the negative impact of diabetes on the lives of PWD and FMs clearly induces distress on both groups. These findings provide new understanding of barriers precluding optimal management of diabetes. Developing strategies to overcome these barriers is now warranted.

Expert patient: the story of a social movement / Patient-expert : l'histoire d'un mouvement social

Expert patient: the story of a social movement. The recognition of patients' expertise appeared in the 80's in the Anglo-Saxon culture. Originally linked to activism, social movements and non-profit organizations of fight against AIDS, this concept has given rise to multiple name variations such as resource-patient, user-peer or mediator-peer, intervening patient. Despite the debates regarding the name of expert-patient, the expertise of patients' experience with chronic illness leads to a recognition and the patient has become a key player in health decision-making bodies, in therapeutic education and in the improvement of healthcare system.

Patient-expert : l'histoire d'un mouvement social. La notion de patient-expert est apparue dans les années 1980 dans la culture anglosaxonne. À l'origine liée à l'activisme, aux mouvements sociaux et aux associations de lutte contre le sida, cette notion a donné lieu à de multiples déclinaisons comme le patient-ressource, le pair-usager ou pair-médiateur, le patient-intervenant. Malgré les débats sur la notion de patient-expert, l'expertise d'expérience des malades chroniques donne lieu à une reconnaissance, et le malade est devenu un acteur incontournable dans les instances de décisions en santé.

[Patient education]. / Éducation thérapeutique.

Any patient living with a chronic renal disease should be offered counselling, information and educational activities. Teaching and organisational endpoint are critical in order to be able to enlarge educational offer to meet the patient's needs. The healthcare system will also have to build educational programs pooling staff resources because no new financial support has been dedicated to Patient Education in hospitals. The aim of Educational programs is to improve patient's quality of life. Behaviours, professional practices and positions are changing throughout the process of implementing educational activities. Healthcare providers have to gain new skills to deal at the same time with the care and the cure.

Determinants of compliance with anti-vectorial protective measures among non-immune travellers during missions to tropical Africa.

BACKGROUND: The effectiveness of anti-vectorial malaria protective measures in travellers and expatriates is hampered by incorrect compliance. The objective of the present study was to identify the determinants of compliance with anti-vectorial protective measures (AVPMs) in this population that is particularly at risk because of their lack of immunity. METHODS: Compliance with wearing long clothing, sleeping under insecticide-impregnated bed nets (IIBNs) and using insect repellent was estimated and analysed by questionnaires administered to 2,205 French military travellers from 20 groups before and after short-term missions (approximately four months) in six tropical African countries (Senegal, Ivory Coast, Chad, Central African Republic, Gabon and Djibouti). For each AVPM, the association of "correct compliance" with individual and collective variables was investigated using random-effect mixed logistic regression models to take into account the clustered design of the study. RESULTS: The correct compliance rates were 48.6%, 50.6% and 18.5% for wearing long clothing, sleeping under bed nets and using repellents, respectively. Depending on the AVPM, correct compliance was significantly associated with the following factors: country, older than 24 years of age, management responsibilities, the perception of a personal malaria risk greater than that of other travellers, the occurrence of life events, early bedtime (i.e., before midnight), the type of stay (field operation compared to training), the absence of medical history of malaria, the absence of previous travel in malaria-endemic areas and the absence of tobacco consumption.There was no competition between compliance with the different AVPMs or between compliance with any AVPM and malaria chemoprophylaxis. CONCLUSION: Interventions aimed at improving compliance with AVPMs should target young people without management responsibilities who are scheduled for non-operational activities in countries with high risk of clinical malaria. Weak associations between compliance and history of clinical malaria or variables that pertain to threat perception suggest that cognition-based interventions referencing a "bad experience" with clinical malaria could have only a slight impact on the improvement of compliance. Further studies should focus on the cognitive and behavioural predictors of compliance with AVPMs.

Determinants of compliance with malaria chemoprophylaxis among French soldiers during missions in inter-tropical Africa.

BACKGROUND: The effectiveness of malaria chemoprophylaxis is limited by the lack of compliance whose determinants are not well known. METHODS: The compliance with malaria chemoprophylaxis has been estimated and analysed by validated questionnaires administered before and after the short-term missions (about four months) in five tropical African countries of 2,093 French soldiers from 19 military companies involved in a prospective cohort study. "Correct compliance" was defined as "no missed doses" of daily drug intake during the entire mission and was analysed using multiple mixed-effect logistic regression model. RESULTS: The averaged prevalence rate of correct compliance was 46.2%, ranging from 9.6%to 76.6% according to the companies. Incorrect compliance was significantly associated with eveningness (p = 0.028), a medical history of clinical malaria (p < 0.001) and a perceived mosquito attractiveness inferior or superior to the others (p < 0.007). Correct compliance was significantly associated with the systematic use of protective measures against mosquito bites (p < 0.001), the type of military operations (combat vs. training activities, p < 0.001) and other individual factors (p < 0.05). CONCLUSIONS: The identification of circumstances and profiles of persons at higher risk of lack of compliance would pave the way to specifically targeted strategies aimed to improve compliance with malaria chemoprophylaxis and, therefore, its effectiveness.