A municipal health center's co-constructed therapeutic patient education program for patients with single or multiple morbidities / Co-construction d'un dispositif d'ETP mono et polypathologique dans un centre municipal de santé

Introduction: The accessibility of Therapeutic Patient Education (TPE) is essential to reduce social inequalities and to meet the challenges posed by the increase in chronic diseases. In France, the distribution of TPE throughout the territory is heterogeneous and patients still lack sufficient access. With these perspectives in mind, a municipal health center has developed an innovative TPE device by involving concerned patients from the outset. Objectives: The objectives of this article are to present the methodology implemented to co-construct a TPE program for patients with one or more prevalent diseases in the territory, as well as the results of the co-construction. Methods: Creation of a project team with various actors: patients, health professionals, administrators, researchers. Organization of synchronous and asynchronous times. Results: Four meetings and numerous exchanges made it possible to: define the common values and operating rules of the project team, reflect on the coordination of the care pathway, identify the specific and shared needs of patients affected by type 2 diabetes, arterial hypertension and/or obesity, agree on the principles of the device. Conclusion: The advantages of this device were discussed: flexible organization with numerous links with local actors, development of partnerships, expansion of the population concerned. Questions and difficulties were encountered, such as the coordination of actors and the representation of partner patients for the targeted diseases. This device will be tested and evaluated, mainly with an objective of improving it.

Introduction: L'accessibilité de l'Éducation Thérapeutique du Patient (ETP) est essentielle pour contribuer à une réduction des inégalités sociales et répondre aux défis posés par l'accroissement des maladies chroniques. En France, la répartition de l'offre d'ETP sur le territoire est inhomogène et les patients y occupent une place encore trop modeste. Dans ces perspectives, un centre municipal de santé a élaboré un dispositif innovant d'ETP en impliquant, dès le début, des patients concernés. Objectifs: Les objectifs de cet article sont de présenter la méthodologie mise en œuvre pour co-construire un dispositif d'ETP pour des patients porteurs d'une ou de plusieurs maladies prévalentes sur le territoire, ainsi que les résultats de la co-construction. Méthodes: Constitution d'une équipe projet avec divers acteurs : patients, professionnels de santé, administratifs, chercheurs. Organisation de temps synchrones et asynchrones. Résultats: Quatre réunions et de nombreux échanges ont permis de : définir les valeurs communes et les règles de fonctionnement de l'équipe projet, réfléchir sur la coordination du parcours de soins, identifier des besoins propres et partagés des patients touchés par le diabète de type 2, l'hypertension artérielle et/ou l'obésité, se mettre d'accord sur les principes du dispositif. Conclusion: Ce dispositif présente des avantages certains : organisation souple avec de nombreux liens avec les acteurs locaux, développement du partenariat, élargissement de la population concernée. Néanmoins, des questionnements et des difficultés ont été rencontrés comme la coordination des acteurs et la représentation des patients partenaires pour les maladies ciblées. Ce dispositif sera expérimenté et évalué principalement en vue de son amélioration.

"Il faut continuer à poser des questions" patient reported outcome measures in cystic fibrosis: An anthropological perspective.

BACKGROUND: People with cystic fibrosis (pwCF) are central in the development of patient-led assessment tools. Qualitative analysis of a frequently used CF-specific patient-reported outcome measure (PROM) sought patient recommendations for development of a new quality of life (QoL) tool. METHODS: We performed an inventory of PROMs, symptom-report and QoL tools used in clinical trials within the European Cystic Fibrosis Society Clinical Trial Network (ECFS-CTN) and in routine clinical practice among Cystic Fibrosis Europe and ECFS members. A qualitative study using cognitive interviews with pwCF and their caregivers reviewed the Cystic Fibrosis Questionnaire (CFQ), the French initial form of the Cystic Fibrosis Questionnaire-Revised (CFQ-R). RESULTS: Survey results from 33 countries revealed over 70 tools used in routine clinical practice, utilized by clinical specialists (n=124), pwCF/parents/carers (n=49) and other allied health professionals (n=60). The CFQ-R was the main PROM used in clinical trials. The qualitative study enrolled 99 pwCF, 6 to 11 years (n=31); 12 to 18 years (n=38); >18 years (n=30) and 26 parents. Inductive thematic analysis based on the CFQ, revealed 19 key themes. Themes common across all cohorts included burden of treatment, impact of disease on day-to-day life, relationships/family, stress/mood, and nutrition. Themes unique to individual groups included, treatment when not symptomatic for the paediatric group; education/studies and planning for the future for adolescents, impact of anxiety and depression on day-to-day life for adults, and for parents, questions addressing anxiety and their role as carers. CONCLUSIONS: Patient-centeredness is paramount in development of an up-to-date PROM in the era of novel therapies.