[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.

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.

The pandemic effect: The outlook of lung transplantation.

Lung transplant (LT) is a life-saving treatment for patients with end-stage lung disease. In the setting of COVID-19-associated acute respiratory distress syndrome (ARDS), LT emerged as a therapeutic option for select cases. It is challenging to determine the extent of the knowledge and interest the United States (US) general population has on LT as salvage therapy during and following the COVID-19 pandemic. It is the authors' opinion that patient therapeutic education (PTE) can directly influence established practices by creating an open channel of communication based on needs and expectations for healthcare services. This perspective is a cursory reflection of the nuances between healthcare providers, their services, the interests and expectations of the general population, specifically on LT following COVID-19. The main endpoint of this study is to analyze the US general population's interest in LT as COVID-19 salvage therapy via the Google Trends (GT) web-kit tool.

Development and Validation of a Self-Administered Questionnaire Measuring Essential Knowledge in Patients With Axial Spondyloarthritis.

OBJECTIVE: To develop and validate a patient knowledge questionnaire regarding axial spondyloarthritis (axSpA). METHODS: Knowledge considered essential for patients with axSpA was identified through Delphi rounds among rheumatologists, healthcare professionals (HCPs), and patients, then reformulated to develop the knowledge questionnaire. Cross-sectional validation was performed in 14 rheumatology departments to assess internal validity (Kuder-Richardson coefficient), external validity, acceptability, reproducibility (Lin concordance correlation coefficient), and sensitivity to change (knowledge score before vs after patient education sessions and effect size). RESULTS: The Spondyloarthritis Knowledge Questionnaire (SPAKE) is a self-administered 42-item questionnaire with a 32-item short form, both scored 0 to 100, assessing knowledge of disease, comorbidities, pharmacological treatments, nonpharmacological treatments, self-care, and adaptive skills. In the validation study (130 patients; 67 [51.5%] male, mean age 43.5 [SD 12.9] yrs), the mean (SD) score of the long-form questionnaire was 71.6 (15.4), with higher scores (better knowledge) in nonpharmacological treatments and adaptive skills and lower scores in cardiovascular comorbidity and pharmacological treatments. Acceptability was good, with no missing data; the internal validity coefficient was 0.85. Reproducibility was good (0.81, 95% CI 0.72-0.89). SPAKE showed good sensitivity to change; scores were 69.2 (15.3) then 82.7 (14.0) after patient education sessions (Hedges effect size = 0.92, 95% CI 0.52-1.31). CONCLUSION: SPAKE is a knowledge questionnaire for patients with axSpA, developed with the involvement of HCPs and patients and reflecting current recommendations for the management of axSpA. SPAKE will be useful in assessing knowledge acquisition and self-management strategies in routine care and research.

Development and validation of a self-administered questionnaire measuring essential knowledge in patients with rheumatoid arthritis.

To develop and validate a questionnaire assessing patient knowledge in rheumatoid arthritis (RA). Knowledge considered essential for patients with RA was identified through a series of Delphi rounds among rheumatologists, health professionals (HPs), patients, and then reformulated to construct the knowledge questionnaire. Cross-sectional multicenter validation was performed in 12 rheumatology departments to assess internal validity (Kuder-Richardson coefficient), external validity, acceptability, reproducibility (Lin's concordance correlation coefficient) and sensitivity to change (difference in total score before and after patient education sessions). Associations between patient variables and knowledge levels were evaluated. RAKE (RA Knowledge questionnairE) is a self-administered 45-item questionnaire scored 0-100, with a 32-item short-form survey assessing knowledge of disease, comorbidity, pharmacological treatments, non-pharmacological treatments, self-care and adaptative skills. Of 130 patients included in the validation study, 108 were women. Acceptability was good with < 5% missing data. Internal validity coefficient was 0.90. Mean (standard deviation) long-form score was 72.8 ± 17.8, with lower scores in comorbidity and self-care and higher scores in adaptive skills. Reproducibility was good (0.86 [0.80; 0.92]). RAKE score was positively correlated with the patients' level of education and the HPs' opinion on the patients' knowledge. RAKE score showed good sensitivity to change: 66.8 ± 16.4 then 83.8 ± 12.7, representing a hedges effect size of 1.14 [95% CI 0.73; 1.55]. RAKE is an updated questionnaire assessing essential knowledge for patients with RA to enhance self-management according to current guidelines and the patients' perspective. RAKE can usefully inform patient education interventions, routine care and research.

[Educational needs and implantable medical devices: How to meet the expectations of patients with coronary stents and heart valves?] / Besoins éducatifs et dispositif médical implantable : comment répondre aux attentes des patients porteurs de stents coronaires et valves cardiaques ?

At the Grenoble Alpes University Hospital Center, patients with cardiovascular disease have the opportunity to participate in a therapeutic education program in the cardiac rehabilitation department. The objective of this study is to analyze the educational needs of patients with coronary stents and heart valve prostheses. Using an exploratory qualitative method, semi-structured research interviews were conducted with 22 patients and an inductive thematic analysis was performed. We found that emergency surgery does not facilitate the assimilation of information in comparison with a scheduled procedure. The image of the "repaired heart" creates a cognitive conflict with the chronicity imposed by secondary preventive monitoring, a particularity of the implantable medical device. Patients feel that the information they receive is sometimes too voluminous and not adapted to their current needs. Thus, we propose an individualized support model based on the respect of temporality and on the psycho-behavioral functioning of the patient.

Long term effect of spa therapy combined with patient education program on subjects with overweight and obesity - A controlled study.

The aim of this single center prospective controlled study in volunteers with obesity and overweight was to evaluate the effect of a patient therapeutic education program (PTE group) combined with spa therapy on weight, physical activity, eating habits and quality of life versus spa therapy alone (control group). The main endpoint was weight change at 5 months after the end of the program. The PTE group of 151 subjects with obesity or overweight followed a 3-week program combining patient education with spa therapy and 189 attended a course of spa therapy alone. At 5 months significant loss was observed in the PTE group compared to controls (-2.69kg vs -1.24kg, p=0.008), a relative weight loss of -2.8% vs -1.3%. At 11 months after spa therapy, only the PTE group maintained a weight loss in addition to the weight loss obtained during spa therapy. The control group returned to the weight they had at the end of spa therapy. In both groups, a significant increase in physical activity was observed at 5 (p<0.001) and 11 months (p<0.001) with a significant better improvement in the PTE group. In addition, while in both groups some quality of life parameters and dietary choices were improved, the improvement (more fruit, vegetables, fish and water) was significantly higher in the PTE group, at both 5 and 11 months after spa therapy. In conclusion, while spa therapy alone initiated positive changes in weight loss, physical activity and some quality of life parameters, the PTE program enhanced this effect.

Essential knowledge for patients with rheumatoid arthritis or spondyloarthritis: Results of a multicentric survey in France among health professionals and patients.

OBJECTIVE: Information and education are recommended for patients with inflammatory arthritis including rheumatoid arthritis (RA) and spondyloarthritis (SpA). However, there is no consensus on which knowledge is essential to enhance patients' self-management. The aim of this study was to determine such knowledge. METHODS: Based on published knowledge questionnaires (KQs) collected by a systematic literature review, a list of items was elaborated, classified in domains and sub domains. A Delphi process was performed with rheumatologists, healthcare professionals and patients in 2014-2015, selecting the items considered useful. RESULTS: Three published KQs were analysed: 2 for RA; 1 for SpA and 5 unpublished KQs were collected. In the KQs, 90 knowledge items were mentioned for RA and 67 for SpA. The 1st Delphi round enlarged the list to 322 items for RA and 265 items for SpA. The second round selected 69 and 59 knowledge items for RA and SpA respectively, of which 36 (52%) and 34 (57%) were not present or modified from the published KQs. Key domains included treatment strategies, managing cDMARDs and bDMARDs, managing symptomatic medications. Knowledge on non-pharmacological treatment concerned pain and fatigue, physical activity, adaptative skills to personal and professional environment, patient-HP communication and shared decision-making. CONCLUSION: The present study provides a corpus of knowledge considered essential for patients in the self-management of their arthritis. The selection of many items reflects recent emphasis on professional recommendations and the patients' perspective. Future work should lead to the development of new updated KQs for patients with inflammatory arthritis.

[Therapeutic education in primary cardiovascular prevention]. / Éducation thérapeutique en prévention primaire cardiovasculaire.

BACKGROUND: As primary prevention against cardiovascular diseases, Patient Therapeutic Education helps to develop a protective lifestyle within a socioeconomic context where risk factors abound. PATIENTS AND METHODS: Patient Therapeutic Education offers those eager to protect their cardiovascular health a program of six workshops. Upon enrolment, a Program aide conducts an educational diagnosis with the patient, specific to each workshop theme, so that he might understand the clinical, socio-professional, cognitive and psycho-affective dimensions. An evaluation of each workshop is requested from participants in the form of open and closed questions. RESULTS: The study comprised 2225people, majority women (79%), relatively old (age 63.9for women, 66.3for men), most often retired (65%). An analysis of the educational diagnosis notes a great frequency of classic risk factors; a good knowledge of the factors favoring them contrasting with the weak means implemented in everyday life to reduce their impact; the great majority of participants (68%) believe they have a well balanced diet; patients are greatly involved in their own health, with a slight external locus involving the general practitioner, the immediate entourage and society. The notes of the evaluation are usually maximum. CONCLUSION: Patient Therapeutic Education arouses strong interest in the public, allows a personalized approach that optimizes learning, increases knowledge and facilitates the use of new protective practices.

[Therapeutic education in primary cardiovascular prevention: 4 years sustained interest]. / Éducation thérapeutique en prévention primaire cardiovasculaire : intérêt prolongé à 4 ans.

BACKGROUND: Our patient therapeutic education program yields improvements in health after one year. But what can we see after 4 years, when the patient alone is responsible for following the program? PATIENTS AND METHODS: Two hundred and ninety-one patients participated in the first part of our study and were followed during one year. Four years into the ongoing study, we reviewed the progress of the first 200 patients. We compared the already published Risk Factors and Eating Habits scores between the beginning of the study (T0), one year later (T1) and after 4 years (T4). RESULTS: The Risk Factor score at T0 is 9.5±7.8, moving to 7±7.5 at T1, and then to 6.8±7.8 at T4 (P<0.001 between T0 and T1 and T0 and T4). Endurance physical activities saw the greatest improvement: 0.79±5 at T0, -1.07±4.5 at T1 and -1.61±4.5 at T4 (P<0.001 between T0 and T1 and T0 and T4). The Eating Habits score went from -18.2±7.3 to -22.2±6.4 and then to -23.5±6.4 (P<0.001 between T0 and T1 and T0 and T4). The best results were obtained through increased consumption of whole grains, green vegetables and fish. CONCLUSION: The positive results of the progress of risk factors and eating habits, noted after one year, are even greater four years after the end of the therapeutic education program.

[Bariatric surgery and patient therapeutic education]. / Chirurgie bariatrique et éducation thérapeutique du patient.

Weight loss surgery or "bariatric surgery", used in cases of severe obesity, is a complex procedure aiming to reduce food intake. An increasingly accessible technique, it requires a long postoperative follow-up and a change in eating habits. Patient therapeutic education encourages the patient to become a player in their care.

[Patient education and breast cancer]. / Éducation thérapeutique et cancer du sein.

The therapeutic education program set up at the Institut Universitaire du Cancer (University Cancer Institute) in Toulouse accompanies the treatment pathway of breast cancer patients. It includes nine collective workshops. From work organization to application, professionals and patients are closely involved.

[Therapeutic education in primary cardiovascular prevention. Interests and limits]. / Éducation thérapeutique en prévention primaire cardiovasculaire. Intérêts et limites.

GOAL OF THE STUDY: Lifestyle improvement is useful in the prevention of cardiovascular disease, but its practical implementation in the general population is limited. Patient therapeutic education can help go beyond these limits. PATIENTS AND METHODS: In primary prevention, we propose a personalized program including one or several individual and collective sessions to help the participants towards a healthier lifestyle. This includes better education about six risk factors (tobacco, sedentary lifestyle, overweight, high blood pressure, high cholesterol, diabetes) as well as advice on better eating habits. The first recommendation is to limit processed meats, the other recommendations advise more fish, green vegetables, whole grains and beans, and fruits. Scores are attributed to six risk factors and five eating habits. These scores are given at the time of the first session and again a year later, thus permitting time comparisons. RESULTS: For the first 291 participants in the program, we observed at one year a significant improvement in physical activities of endurance and in the consumption of the recommended food groups (fish, green vegetables, fruits, whole grains and beans). CONCLUSION: The patient's lifestyle has improved as a whole, certain parameters more than others. Assessed patient therapeutic education should be offered to a larger number of people.