{"id":15967,"date":"2020-12-19T13:05:09","date_gmt":"2020-12-19T12:05:09","guid":{"rendered":"https:\/\/wordpress-test.app.u-pariscite.fr\/la-personne-en-medecine\/?p=15967"},"modified":"2023-11-09T12:06:24","modified_gmt":"2023-11-09T11:06:24","slug":"enjeux-psychosociaux-des-nouveaux-traitements-pour-la-mucoviscidose-et-la-drepanocytose","status":"publish","type":"post","link":"https:\/\/wordpress-test.app.u-pariscite.fr\/la-personne-en-medecine\/enjeux-psychosociaux-des-nouveaux-traitements-pour-la-mucoviscidose-et-la-drepanocytose\/","title":{"rendered":"REVIVRE \u2013 Enjeux psycho-sociaux des nouveaux traitements pour deux maladies rares : la dr\u00e9panocytose et la mucoviscidose."},"content":{"rendered":"

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Cette \u00e9tude s\u2019int\u00e9resse au v\u00e9cu psycho-social des patients ayant re\u00e7u un traitement innovant dans le cadre de la prise en charge de deux maladies rares : la dr\u00e9panocytose et la mucoviscidose. Ces traitements sont nomm\u00e9ment l\u2019allogreffe de cellules souches h\u00e9matopo\u00ef\u00e9tiques, pour les adolescents et jeunes adultes dr\u00e9panocytaires, <\/strong>et le Kaftrio\u00ae <\/strong>(modulateurs CFTR), pour la mucoviscidose.<\/strong><\/p>\n<\/div>\n<\/div>\n<\/div>\n

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REVIVRE<\/em><\/h1>\n

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En raison de leur caract\u00e8re r\u00e9cent, leurs effets sur le v\u00e9cu individuel des patients, ainsi que\u00a0 sur la relation de soins avec les professionnels de sant\u00e9 sont tr\u00e8s peu document\u00e9s. Or, si la plupart du temps ces traitements permettraient de \u00ab\u00a0gu\u00e9rir\u00a0\u00bb (comme dans le cas de la dr\u00e9panocytose) ou du moins de r\u00e9duire, d\u2019un point de vue somatique, les sympt\u00f4mes de mani\u00e8re in\u00e9dite \u00e0 ce jour, ils ne seraient pas toujours \u00ab\u00a0bien v\u00e9cus\u00a0\u00bb par certains patients. \u00c0 en croire certains cliniciens, des membres des associations de patients ou encore diff\u00e9rents t\u00e9moignages \u00e9manant de patients sur les r\u00e9seaux sociaux, ils auraient des effets inattendus et non n\u00e9gligeables sur le plan psychosocial. De m\u00eame, ces nouveaux traitements et les perspectives qu\u2019ils ouvrent sembleraient modifier de fa\u00e7on importante les relations de soin.<\/p>\n

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Malgr\u00e9 des diff\u00e9rences relatives \u00e0 l\u2019expression symptomatique de ces maladies, mais aussi aux traitements propos\u00e9s, aux parcours de soin et aux populations majoritairement touch\u00e9es, l\u2019introduction de ces traitements innovants pour ces deux maladies r\u00e9v\u00e9lerait un \u00ab\u00a0paradoxe commun\u00a0\u00bb. Comment comprendre que la gu\u00e9rison ou la tr\u00e8s nette am\u00e9lioration symptomatique, du point de vue m\u00e9dical, s\u2019accompagne, chez certains patients, d\u2019un mal-\u00eatre accru\u00a0?<\/p>\n

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Cette \u00e9tude vise \u00e0 explorer ce \u00ab\u00a0paradoxe\u00a0\u00bb au moyen d\u2019une m\u00e9thodologie qualitative et participative <\/strong>\u2013 qui pr\u00e9voit la participation des associations de patients des deux pathologies et des cliniciens lors de ses diff\u00e9rentes \u00e9tapes. Elle s\u2019appuiera sur des entretiens men\u00e9s avec les personnes<\/strong> qui b\u00e9n\u00e9ficient ou qui ont b\u00e9n\u00e9fici\u00e9 de ces traitements <\/strong>et avec des professionnels de sant\u00e9 qui en assurent le suivi.<\/strong><\/p>\n

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Un corpus th\u00e9orique interdisciplinaire en sciences humaines et sociales <\/strong>sera mobilis\u00e9 afin de mieux comprendre les cons\u00e9quences psycho-sociales des changements dus aux nouveaux traitements propos\u00e9s pour ces deux maladies rares.<\/strong> Il permettra de sortir d\u2019une d\u00e9finition de la maladie et du soin strictement m\u00e9dicale, en \u00e9largissant ses enjeux au-del\u00e0 de la seule r\u00e9solution ou ma\u00eetrise de la pathologie, des sympt\u00f4mes ou des s\u00e9quelles qu\u2019elle occasionne sur le plan biologique.<\/p>\n

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Ce travail r\u00e9alis\u00e9 dans le cadre de l\u2019Institut La Personne en M\u00e9decine a b\u00e9n\u00e9fici\u00e9 du soutien de l\u2019Initiative d\u2019Excellence Universit\u00e9 Paris Cit\u00e9 (ANR-18-IDEX-0001, IdEx Universit\u00e9 Paris Cit\u00e9) et de la Fondation Maladies Rares.<\/strong><\/p>\n

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\u00c9quipe \u00ab Dr\u00e9panocytose \u00bb : <\/strong><\/p>\n

Cliniciens<\/strong><\/p>\n