رسالة جامعية
Quelle place pour le médecin généraliste dans la prise en charge des maladies rares ? Analyse des attentes de patients atteints de maladies lysosomales
| العنوان: | Quelle place pour le médecin généraliste dans la prise en charge des maladies rares ? Analyse des attentes de patients atteints de maladies lysosomales |
|---|---|
| المؤلفون: | Sévêque, Marie-Anne |
| المساهمون: | Université Paris Descartes - Faculté de Médecine (UPD5 Médecine), Université Paris Descartes - Paris 5 (UPD5), Marcel-Louis Viallard |
| المصدر: | https://dumas.ccsd.cnrs.fr/dumas-01119991Test ; Médecine humaine et pathologie. 2014. |
| بيانات النشر: | HAL CCSD |
| سنة النشر: | 2014 |
| المجموعة: | DUMAS (Dépôt Universitaire de Mémoires Après Soutenance) |
| مصطلحات موضوعية: | Place du médecin généraliste, Attentes, Médecin traitant et maladie rare, Attentes des patients, Rôle du médecin généraliste, Étude qualitative, Maladie rare, Coordination des soins, Soins primaires, Maladie rare et médecine générale, Maladie orpheline, Patient, MESH: Lysosomal storage diseases, MESH: Rare diseases, MESH: General practitioners, MESH: Qualitative research, MESH: Nervous system, [SDV.MHEP]Life Sciences [q-bio]/Human health and pathology |
| الوصف: | INTRODUCTION. Patients with lysosomal storage disorders are few and far between our daily general practice. However, they need multidisciplinary care, and the general practitioner (GP) needs to be involved. What is the GP's role in this complex situation? We interviewed patients to learn about their expectations for the general practitionner, in order to propose solutions, to define this role as well as possible, and to find useful tools that may help the GP handle these cases. METHOD. A qualitative study was conducted from May to November 2013. It was based on a survey that was handed out directly or sent by mail or email, to patients with lysosomal storage disorder, or their parents if needed. This survey asked about their expectations towards their GP. RESULTS. With a 50% response rate, our survey showed that the GP has a part to play in the treatment of rare diseases. More than half the interviewed patients (58%), wanted their GP to be more involved. They expected them to coordinate the various aspects of the treatment, they looked to their GP for guidance and expected them to listen to their concerns, know about the disease and about its consequences on their daily lives. DISCUSSION. Even if rare diseases are complex, the GP has a role in the care of theses patients who expect a better collaboration. Some tools already exist, but there is still too little communication about them. Awareness to the problem of rare diseases should also be increased among the medical community. Finally, simple and personnalized tools should be created for the GP to better coordinate with expert centers. ; INTRODUCTION. Les patients atteints de maladies lysosomales font partie de ces patients rares dans nos cabinets de médecine générale. Mais leur prise en charge est multidisciplinaire et inclus le médecin généraliste. Quelle est sa place dans cette prise en charge souvent complexe ? Nous avons interrogé les patients sur leurs attentes afin d'y répondre de manière adaptée, chercher à décrire au mieux notre rôle, et trouver des ... |
| نوع الوثيقة: | master thesis |
| اللغة: | French |
| العلاقة: | dumas-01119991; https://dumas.ccsd.cnrs.fr/dumas-01119991Test; https://dumas.ccsd.cnrs.fr/dumas-01119991/documentTest; https://dumas.ccsd.cnrs.fr/dumas-01119991/file/ThExe_SEVEQUE_Marie-Anne_DUMAS.pdfTest |
| الإتاحة: | https://dumas.ccsd.cnrs.fr/dumas-01119991Test https://dumas.ccsd.cnrs.fr/dumas-01119991/documentTest https://dumas.ccsd.cnrs.fr/dumas-01119991/file/ThExe_SEVEQUE_Marie-Anne_DUMAS.pdfTest |
| حقوق: | http://creativecommons.org/licenses/by-nc-ndTest/ ; info:eu-repo/semantics/OpenAccess |
| رقم الانضمام: | edsbas.D00B65A1 |
| قاعدة البيانات: | BASE |
| الوصف غير متاح. |