[Health literacy: Definition, assessment tools, state of the art in Europe, health consequences and ways to improve it]. / La littératie en santé : définition, outils d'évaluation, état des lieux en Europe, conséquences pour la santé et moyens disponibles pour l'améliorer.

The term "littératie" is derived from the English word "literacy", which refers to knowledge and skills in the fields of reading, writing, speech (or other means of communication) and calculation that allow people to be efficient and integrated into society. Health literacy is a recent concept that relies on the ability to find, understand, evaluate and communicate information in ways that promote, maintain and improve the health of the individual in various settings over the course of life. The objectives of this review are first of all to realize an overview on the health literacy of populations in Europe. Then, we propose to study the link between health literacy and health status (risk behaviors, chronic diseases, morbi-mortality, adherence to care and medical monitoring) and to study its medico-economic impact. We also analyzed the association between personalized therapeutic education and health literacy. Finally, we propose a review of the means put in place in the care system to improve the health literacy of the patients we manage.

[Successful collaboration between Ifsi trainers and field professionals in the field of TVE]. / Une collaboration réussie entre formateurs et professionnels de terrain en Ifsi autour de l'ETP.

The educational dimension plays an important role in patient care, given the reduction in hospitalisation time, the complexity of the information to be given to patients and the increase in chronic diseases. It is therefore important to train not only healthcare professionals, but also nursing students. To provide Patient Therapeutic Education (PTE), students must be able to adopt an educational posture rather than that of experts and graduates must be able to carry out educational diagnoses or shared educational assessments and run therapeutic workshops. A cross-disciplinary PTE project has been developed at the Ifsi in Périgueux, in collaboration with health professionals and expert patients.

A soft systems approach of asthma management in children based on therapeutic education and e-learning.

One of the most common respiratory chronic diseases is asthma, with 5-16 % of world prevalence. In chronic disease, prevention, diagnosis, management, and palliation are the strategies for a care model; the patient-self management is fundamental with the so-called therapeutic education (TE) to train the patient in the necessary skills. The challenge of TE grows when the patient is a child or a person with special needs, even more in public health care in low- and middle-income countries. This is a problematic human situation, that needs soft system thinking. In this research, the analytic hierarchy process was used to determine the perceived importance of the factors that affect children's asthma health care in a public health institution in Mexico. The soft systems methodology (SSM) was applied to learn about the disease self-management, in order to obtain activities models and an action plan. According to AHP, human resources and education were percived as the most important among the factors that affect children health care within the institution. The perceived importance of two main subfactors (human resources training and TE) was around 34 %, which emphasizes the need to generate strategies for the improvement of the education of patients and health care providers. In MSS, the rich vision, the CATWOE, the root definition, and an activities model were proposed, including the application of an instructional design methodology (ADDIE) for the development of learning objects of asthma for children. Desirable and feasible actions and recommendations include the update of the national clinical practice guides, the use of control measures such as the Asthma Control Test, and a daily asthma diary to register the daily status of the breathing capacity, the drug administration, and the potential trigger events. The proposed model can be used as part of a systemic patient-and-family centered approach for chronic care model (CCM), particularly in diseases unsuitable for prevention interventions.

[Quantitative and qualitative evaluation of a specific grid of head and neck post-cancer with user healthcare professionals]. / Évaluation quantitative et qualitative d'une grille spécifique de l'après-cancer des voies aérodigestives supérieures auprès des professionnels de santé utilisateurs.

INTRODUCTION: The post-cancer period is a delicate one, as it does not necessarily mean good health and/or a return to life as it was "before". Over the past twenty years, a number of initiatives have been launched to improve support for people after cancer. We have created a post-cancer care pathway for patients with head and neck cancer, based on a nursing interview and the use of a post-cancer grid. MATERIALS AND METHODS: The steps involved in creating the pathway and the grid, the fruit of a working group involving the educational team, five patient associations and two expert patients, with the support of a health promotion engineering resource association, were explained. A quantitative and qualitative evaluation of the use of the grid was carried out. RESULTS: Sixty-five patients benefited. Individual interviews with the nurses involved in the post-cancer process showed that the grid was complete, easy to follow and based on the semi-directive interview model, but that care had to be taken not to follow it to the letter, so as not to impair the quality of the interview. CONCLUSION: Our post-cancer approach for upper aerodigestive tracts, anchored in a dedicated grid, highlights the often underestimated significance of this crucial phase in patients' journeys. While the grid is a valuable tool in development, its use requires caution, with further research needed to confirm its effectiveness. We encourage adaptation by teams, respecting fundamental principles.

Factors associated with therapeutic non-adherence in renal transplant patients: a bicentric study in Algeria / Facteurs associés à la non-observance thérapeutique chez les patients greffés rénaux : une étude bicentrique en Algérie

Introduction: Medication non-adherence is a global concern, particularly in the context of renal transplantation, where it leads to graft failures, increased hospitalizations, diminished quality of life for patients, and higher healthcare costs. The aim of this study was to assess the level of therapeutic adherence among Algerian kidney transplant recipients and identify potential influencing factors. Methods: A descriptive, cross-sectional bicenter study was conducted among kidney transplant patients receiving outpatient care at two specialized medical centers in Algeria: the Urology Department of the Hospital Establishment for Urology, Nephrology, and Renal Transplantation in Constantine, and the Nephrology and Renal Transplantation Department of the University Hospital Center (CHU) in Blida, spanning from January to December 2022. Therapeutic adherence was assessed using the 8-item Morisky questionnaire, while the level of knowledge was analyzed through a 12-item questionnaire. Logistic regression was used to identify factors associated with non-adherence to therapy. Results: This study included 130 patients with an average age of 47 years and a sex ratio of 1.7. The results revealed therapeutic non-adherence in 40.8% of the patients. Multivariate analysis identified several potentially associated factors, including residence, unemployment status, lack of affiliation with a health insurance fund, the use of a therapeutic regimen involving triple therapy, the occurrence of adverse effects, limited education level, and insufficient disease knowledge. Furthermore, non-adherence was associated with an increased risk of graft rejection. Conclusion: The findings of this study highlight concerning therapeutic adherence among kidney transplant recipients, emphasizing the crucial importance of therapeutic education to improve treatment adherence and underscoring the need to integrate these factors into clinical patient management.

Introduction: La non-observance thérapeutique est un problème mondial préoccupant, notamment dans le contexte de la transplantation rénale où elle entraîne des échecs de greffe, une augmentation des hospitalisations, une détérioration de la qualité de vie des patients et des coûts de santé accrus. Cette étude avait pour objectif d'évaluer le niveau d'observance thérapeutique chez les transplantés rénaux algériens et d'identifier les facteurs qui pourraient l'influencer. Méthodes: Une étude descriptive transversale bicentrique a été menée auprès de patients transplantés rénaux suivis en ambulatoire dans deux centres médicaux spécialisés en Algérie : le service d'urologie de l'Établissement hospitalier spécialisé (EHS) en urologie, néphrologie et transplantation rénale de Constantine ainsi que le service de néphrologie et transplantation rénale du Centre hospitalier universitaire (CHU) de Blida, sur une période allant de janvier à décembre 2022. L'observance thérapeutique a été évaluée à l'aide du questionnaire à 8 items de Morisky, tandis que le niveau de connaissance a été analysé à travers un questionnaire de 12 items. La régression logistique a été utilisée pour identifier les facteurs associés à la non-observance thérapeutique. Résultats: Cette étude a inclus 130 patients présentant un âge moyen de 47 ans et un sex ratio de 1,7. Les résultats ont révélé une non-observance thérapeutique chez 40,8 % des patients. L'analyse multivariée a permis d'identifier plusieurs facteurs potentiellement associés à cette non-observance, notamment le lieu d'habitation, le statut de chômage, l'absence d'affiliation à une caisse d'assurance maladie, l'utilisation d'un schéma thérapeutique incluant une trithérapie, la survenue d'effets indésirables, le niveau d'éducation limité et une connaissance insuffisante de la maladie. En outre, la non-observance a été associée à un risque accru de rejet de greffe. Conclusion: Les résultats de cette étude révèlent une observance thérapeutique préoccupante chez les transplantés rénaux, soulignant l'importance cruciale de l'éducation thérapeutique afin de l'améliorer et mettant en évidence la nécessité d'intégrer ces facteurs dans la gestion clinique des patients.

[Prehabilitation in chronic inflammatory bowel disease: the Proactive care pathway]. / Préhabilitation dans les maladies inflammatoires chroniques de l'intestin : le parcours de soins Proactive.

Inflammatory Bowel Diseases (IBD) cause diarrhea and abdominal pain that impair quality of life. Digestive damage frequently leads to undernutrition and sarcopenia, which worsen the prognosis of the disease. This led to the development of PROACTIVE, a multimodal prehabilitation program designed to improve the functional capacities, nutritional status and quality of life of IBD patients. 19 patients have been included in our pilot program, with an initial personalized multimodal assessment, 10 group sessions with 4 patients, and a final multimodal assessment proposing personalized care for home. Initial data are positive, showing an improvement in patients' physical capacity and quality of life after 6 weeks.

[Optimizing the management of heart failure: structuring the care pathway]. / Optimisation de la prise en charge de l'insuffisance cardiaque : structuration du parcours de soins.

The incidence of chronic heart failure continues to rise in Western countries, justifying the implementation of an optimized multidisciplinary organization based on medical and nursing convergence. Around the main heart failure, assistance and transplantation unit at Toulouse University Hospital, several structures have been put in place to better manage heart failure patients and improve their care pathway.

[Taking into account the link between health and the environment]. / Prendre en compte le lien entre santé et environnement.

Because of their weight and size, children are much more sensitive to environmental pollution than adults. They breathe, drink and eat more, and therefore absorb more potentially toxic substances, as the European Environment Agency points out. Challenges therefore lie ahead in a number of areas. As soon as pregnancy is announced, prevention and awareness-raising workshops are offered at the three Trousseau-Tenon-Pitié-Salpétrière maternity units of the Sorbonne Université-Paris hospital group of the Assistance publique-Hôpitaux de Paris. If a child is suspected of having food allergies and/or requires medical attention, the paediatric allergology department of the Armand-Trousseau hospital in the 12th arrondissement will be contacted.

Proceedings of the annual meeting of the European Consortium of Lipodystrophies (ECLip), Pisa, Italy, 28-29 September 2023.

Lipodystrophy syndromes are rare diseases primarily affecting the development or maintenance of the adipose tissue but are also distressing indirectly multiple organs and tissues, often leading to reduced life expectancy and quality of life. Lipodystrophy syndromes are multifaceted disorders caused by genetic mutations or autoimmunity in the vast majority of cases. While many subtypes are now recognized and classified, the disease remains remarkably underdiagnosed. The European Consortium of Lipodystrophies (ECLip) was founded in 2014 as a non-profit network of European centers of excellence working in the field of lipodystrophies aiming at promoting international collaborations to increase basic scientific understanding and clinical management of these syndromes. The network has developed a European Patient Registry as a collaborative research platform for consortium members. ECLip and ECLip registry activities involve patient advocacy groups to increase public awareness and to seek advice on research activities relevant from the patients perspective. The annual ECLip congress provides updates on the research results of various network groups members.

[Children with atopic eczema and their environment]. / L'enfant atteint d'eczéma atopique et son environnement.

Taking an interest in the environment of a child suffering from eczema means understanding the word "environment" in the broadest possible sense: the child's lifestyle, family, social and cultural environment. By taking all these aspects into account, we can optimize the effectiveness of treatments, and avoid the multiple problems and comorbidities associated with moderate and severe eczema. It's up to caregivers to be vigilant about this, and to reposition the right gestures by spotting errors right from the start, even in the case of mild eczema. The best way to respond to this challenge, i.e. to help parents understand, is to draw on the principles of therapeutic patient education.

[Current issues surrounding Parkinson's disease]. / Enjeux actuels autour de la maladie de Parkinson.

The number of people suffering from Parkinson's disease is constantly increasing. Diagnosis is based on the motor and non-motor symptoms present throughout the course of the disease. To preserve patient autonomy, the main therapeutic challenge is to propose a treatment adapted to each profile, in conjunction with the implementation of non-medication strategies, reflection on improved accessibility to existing medication and research into innovative therapies.

X-linked hypophosphatemia: The value of feedback focus groups to assess patient and caregiver needs.

X-linked hypophosphatemia (XLH) is a rare, multi-systemic, invalidating disease requiring a multi-disciplinary approach. No specific action in XLH, neither for the patients' specific needs nor for the methodology for the evaluation of these were found. Thus, to identify the needs of XLH patients and their caregivers, we organised focus groups in our reference centre with a view to build educational sessions. Focus groups including either XLH children, XLH adults, or caregivers ran in parallel. Each group was led by a person trained in therapeutic education (nurse, paediatric nephrologist) with another healthcare provider specialised in XLH (rheumatologist, nephrologist). One additional person with knowledge of XLH (clinical research associate, paediatric resident) took minutes. The duration of each session was 1.5h; XLH patients/caregivers were asked to answer age-adapted "open questions" on their daily life and quality of life. At the end, a global restitution was made. The needs identified were later grouped and analysed, which allowed us to build the educational sessions. The XLH children group included 5 children, the XLH adults group included 10 adults, and the caregivers group included 6 parents or partners. Major needs were identified: knowledge of XLH, treatment, dental care and adapted physical activity, with additional questions on socio-professional adaptations and financial support in adults. Partner patients were also identified to co-build the support programme. The study allowed us to identify the needs of XLH patients and their caregivers using the focus group method and then, using these needs, to build educational sessions and a therapeutic education programme for XLH patients.

Weight changes in overweight children enrolled in a therapeutic education program.

BACKGROUND: Between 2016 and 2018, overweight children in the Midi-Pyrénées region of France were invited to participate in the Tout sur l'EQuilibre Alimentaire et l'Activité Physique (TEQAAP; All About Balanced Eating and Physical Activity) education program offered by the Structure d'Expertise Régionale Obésité Occitanie (SEROO; Regional Expert Center for Obesity in Occitanie). OBJECTIVES: To describe the patient population and evaluate the program efficacy. The primary criterion was the body mass index (BMI) Z-score of the patients at the end of the program compared to the beginning. METHODS: This retrospective, descriptive, and analytical study included 262 children (mean age: 10 years+10 months; 64% female) between 1 January 2016 and 31 December 2018. Data from 138 patients (52.7%) were accessible and analyzed. The mean study duration was 9 months. RESULTS: The mean BMI at inclusion was 23.3 kg/m² with a mean Z-score of 2.8 ± 0.6; 82% were overweight, 11.1% were obese, and 6.1% were normal weight. Socioeconomic categories were well-balanced (35% high, 28% intermediate, 37% low). At the end of the study, 87% of the children had improved or stabilized their BMI, and Z-scores were lower by 9%±2 (p<0.001). CONCLUSION: The TEQAAP program led to an improvement in the BMI of overweight children.

Setting up and assessing a therapeutic education program for asthmatic patients.

BACKGROUND: Asthma is a major public health issue. It remains uncontrolled, despite the availability of effective treatments. Appropriate education programs are required to improve the situation. The study aims to design and assess an educational program based on asthma patients' perceived needs. MATERIALS AND METHODS: A cross-sectional prospective study was conducted in the pulmonology department of the Hassan II University Hospital in Fez. A convenience sample of asthma patients, whether hospitalized or not, was recruited. Two hundred and twenty adult asthma patients completed an educational needs survey (ENS). An asthma knowledge questionnaire for adult patients was used to assess the program on the criterion of improving asthma knowledge. Data collected by ENS was analyzed by standard descriptive statistics. The Student's T test for paired samples was used to compare the means of the Asthma Knowledge Questionnaire scores before and after therapeutic education. RESULTS: Most patients were married and residing in urban areas. The illiteracy rate was 50%. One patient was a regular smoker. 125 patients (56.82%) reported non-compliance to treatment. The pathophysiology of asthma (chronic airway inflammation, bronchial hyperreactivity, and bronchial obstruction), causes and complications, treatment (inhalation technique), asthma attacks and environmental management, lifestyle, and psychological support were the patients' main perceived educational needs. Based on these findings, an instructional program was created and evaluated with 30 patients. After the program, asthma knowledge increased significantly. CONCLUSION: Our results suggest that an educational intervention can improve asthma knowledge.

Risk factors for serious adverse events related to vitamin K antagonists in children with congenital or acquired heart disease: a prospective cohort study.

OBJECTIVES: To assess the occurrence of thrombosis and major bleeding in children with congenital or acquired heart disease (CAHD) treated with VKA and to identify risk factors for these serious adverse events (SAE). STUDY DESIGN: All children enrolled in our VKA dedicated educational program between 2008 and 2022 were prospectively included. The time in therapeutic range (TTR) was calculated to evaluate the stability of anticoagulation. Statistical analysis included Cox proportional hazard models. RESULTS: We included 405 patients. Median follow-up was 18.7 (9.3-49.4) months. The median TTR was 83.1 % (74.4 %-95.3 %). No deaths occurred because of bleeding or thrombotic events. The incidences of thrombotic and major bleeding events were 0.9 % (CI95 % [0.1-1.8]) and 2.3 % (CI95 % [0.9-3.8]) per patient year, respectively. At 1 and 5 years, 98.3 % (CI95 % [96.2 %-99.2 %]) and 88.7 % (CI95 % [81.9 % 93.1 %]) of patients were free of any SAE, respectively. Although the mechanical mitral valve (MMV) was associated to major bleeding events (HR = 3.1 CI95 % [1.2-8.2], p = 0.02) in univariate analysis, only recurrent minor bleeding events (HR = 4.3 CI95 % [1.6-11.7], p < 0.01) and global TTR under 70 % (HR = 4.7 CI95 % [1.5-15.1], p < 0.01) were independent risk factors in multivariable analysis. In multivariable analysis, giant coronary aneurysms after Kawasaki disease (HR = 7.8 [1.9-32.0], p = 0.005) was the only risk factor for thrombotic events. CONCLUSION: Overall, VKA therapy appears to be safe in children with CAHD. Suboptimal TTR, regardless of the indication for VKA initiation, was associated with bleeding events.

Sickle cell disease: embedding patient participation into an international conference can transform the role of lived experience.

BACKGROUND: Sickle cell disease (SCD) is an inherited chronic life-threatening disorder with increasing prevalence in Europe. People living with SCD in Europe mainly belong to vulnerable minorities, have a lower level of health education and suffer from isolation compared to those living with other chronic conditions. As a result, SCD patients are much less likely to partner in the design of research related to their condition and are limited in their ability to influence the research agenda. Aiming to increase the influence of patient voice in the development of SCD-related research, we set out to develop patient centered actions in the frame of International Scientific Conferences in collaboration with the ERN-EuroBloodNet, Oxford Blood Group, Annual Sickle Cell Disease and Thalassaemia Conference (ASCAT), the European Hematology Association and the British Society of Hematology. RESULTS: Two events were organized: a one-day research prioritization workshop and a series of education sessions based on topics chosen by SCD patients and their families. Methodology and outcomes were analyzed in terms of influence on scientific, medical and patient communities. CONCLUSION: The ERN-EuroBloodNet workshops with patients at annual ASCAT conferences have provided an opportunity to enhance patient experience and empowerment in SCD in Europe, producing benefits for patients, caregivers, patient associations and health professionals. Future work should focus on delivering the research questions identified at this workshop and the opportunities to share information for patient education.

Patient education in atopic dermatitis: a scoping review.

BACKGROUND: Atopic dermatitis (AD) is a chronic inflammatory skin disease that affects children and adults. Poor treatment adherence in AD requires interventions to promote self-management; patient education in chronic diseases is key to self-management. Many international AD management guidelines published to date include a recommendation for educating patients as part of their treatment but there are no formal recommendations on how to deliver this knowledge. MAIN: We performed a scoping review to map the existing literature on patient education practices in AD and to highlight the clinical need for improved patient education in AD. The literature search was performed with the online databases MEDLINE, Embase, Grey Matters, ClinicalTrails.gov and the International Clinical Trials Registry Platform (ICTRP). The search strategy yielded 388 articles. Of the 388 articles screened, 16 studies met the eligibility criteria, and the quantitative data was summarized by narrative synthesis. The majority of studies were randomized controlled trials conducted in Europe, Asia and North America. Since 2002, there have been limited studies evaluating patient education in the treatment of AD. Frequent education methods used included group-based educational programs, educational pamphlets, individual consultations and online resources. Education was most commonly directed at caregivers and their children. Only one study compared the efficacy of different education methods. In all included studies, the heterogenous nature of outcome measures and study design limited the consistency of results. Despite the heterogeneity of studies, patient education was shown to improve quality of life (QoL), disease severity and psychological outcomes in AD patients. CONCLUSION: This scoping review highlights that patient education is effective in a variety of domains relevant to AD treatment. Further comparative studies and randomized trials with longer-term follow-up are needed to provide validated and consistent patient education recommendations for AD; these may depend on age and population.

The impact of therapeutic education programs on the quality of life of patients with multiple sclerosis: Protocol of a systematic review.

The quality of life (QOL) of patients with multiple sclerosis (MS) is estimated to be poor compared to the general population. Its management is complex thus requiring openness to non-pharmacological approaches such as therapeutic education (TPE). However, there is an abundance of educational programs with several components and varying degrees of effectiveness. This protocol is developed with the objective to determine the impact of TPE programs on the QOL of MS patients. We will undergo research in PubMed, Web of Science, and Scopus to identify all eligible articles published between January 1st, 2007, and February 2022 evaluating the QOL. We will include any quantitative study design: Randomized Controlled Trials (RCTs), non-randomized controlled trials, non-randomized uncontrolled trials, and observational studies. The quality of these studies will be assessed by recommended tools. Two investigators will independently perform the data extractions and any disagreements will be resolved by other reviewers. A narrative synthesis will report results according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) checklist guidelines to draw conclusions based on the totality of the evidence. These results will be summarized by characteristics of studies and programs and by effects on the QOL. This systematic review will provide practice guidance and evidence to effectively target the features and components of TPE programs, to effectively meet the specific needs of MS patients and thereby improve their QOL, and on the other hand to facilitate the appropriation of these programs by clinicians and researchers to optimize the management of MS. Systematic review registration: PROSPERO CRD42022338651.

[Associations to promote access to care and recognition of obesity]. / Des associations pour favoriser l'accès aux soins et la reconnaissance de l'obésité.

Patient associations bring many benefits to people suffering from obesity. What's more, through their actions, these associations contribute to the recognition of obesity as a pathology.

Impact of therapeutic education on the evolution of social representations of medication in patients with Parkinson's disease: A quantitative and qualitative study (ETPARK REMED).

BACKGROUND: Among the workshops of our therapeutic patient education (TPE) program, the medication workshop (TPEM workshop) is very frequently proposed to patients in view of the difficulties they encounter related to the complexity of managing antiparkinsonian treatment. Patients' appropriation of their medications could depend on their social representations. OBJECTIVES: To evaluate the effect of our TPEM workshop on the social representations PD patients have of their medications and to compare it with that of another therapeutic intervention such as a talking group defined as the control group. METHODS: This single-center, prospective, randomized, parallel-group study investigated the social representations of medication through a questionnaire on knowledge about antiparkinsonian medications, a questionnaire on beliefs about medication (BMQ), and a word association task. RESULTS: In the TPEM group (n=16), the workshop induced significant effects over time on the knowledge questionnaire (P=0.01), BMQ specific necessity and concerns scores (P=0.04 and 0.01, respectively), necessity-concerns differential (P=0.04), and BMQ general harm (P=0.04). No significant difference was found in the talking group (n=6). Comparison of the two groups showed a significant difference of the BMQ general harm with a decrease in belief in the harmfulness of the medications in the workshop group (P=0.03). The results of the verbal association task showed a modification in the content and structure of the social representations of medication in the TPEM group. DISCUSSION: The TPEM workshop helped reduce initial negative aspects of medication representations. Improved knowledge of their medication allowed patients to feel more competent and legitimate in communicating with caregivers, modifying their beliefs about medications. Indeed, the medication was perceived as less restrictive, care becoming central as shown by the emergence of the medical team in the social representations of the medication. CONCLUSION: All the results show a specific beneficial effect of the TPEM workshop through an evolution of the social representations of medications, which became more positive in our PD patients.