Nā ʻano / kaikaina-kamaliʻi / hp / ʻano-kēpau-ʻōpio-pdq
Nā maʻi ʻōuli o ka mālama ʻana i ke kamaliʻi
ʻO ka ʻikepili ākea e pili ana i nā Cances Rare o ka wā kamaliʻi
Ma keia Pauku
- Hoʻolauna
Hoʻolauna
Kākaʻikahi ka maʻi ʻaʻai ma nā keiki a me nā ʻōpio, ʻoiai ke piʻi mālie nei ka ulu ʻana o ka maʻi ʻaʻa kamaliʻi mai 1975. [1] ʻO ke kuhikuhi ʻana i nā kikowaena lapaʻau me nā hui multidisciplinary o ka loea o ka maʻi ʻaʻai i ʻike ʻia i ka mālama ʻana i nā maʻi ʻaʻai e kū ana i ka wā kamaliʻi a me ka ʻōpio e noʻonoʻo pono ʻia no nā keiki a me nā ʻōpio me ka maʻi ʻaʻai. Hoʻohui kēia hui multidisciplinary i ka mākau o ke kauka mālama mua, nā kauka lāʻau pediatric, oncologists radiation, oncologists / hematologists pediatric, specialist rehabilitation, specialists nurse pediatric, limahana limahana, a me nā mea ʻē aʻe e hōʻoia i ka loaʻa ʻana o nā keiki i ka lāʻau, mālama kōkua, a me ka hoʻoponopono hou ʻana. e hoʻokō i ke ola kūpono a me ka maikaʻi o ke ola.
ʻO nā ʻōkuhi no nā kikowaena maʻi maʻi pediatric a me kā lākou kuleana i ka mālama ʻana i nā mea maʻi pediatric me ka maʻi ʻaʻai i hōʻike ʻia e ka American Academy of Pediatrics. [2] Ma kēia mau kikowaena maʻi maʻi pediatric, loaʻa nā hoʻokolohua hoʻokolohua no ka nui o nā ʻano maʻi ʻaʻai e kū i nā keiki a me nā ʻōpio, a hāʻawi ʻia ka manawa kūpono e komo i kēia mau hoʻāʻo i ka hapa nui o nā mea maʻi a me ko lākou mau ʻohana. Hoʻolālā maʻamau nā hoʻokolohua hoʻokolohua no nā keiki a me nā ʻōpio i ʻike ʻia me ka maʻi ʻaʻai e hoʻohālikelike i ka hoʻomaʻamaʻa ʻoi aku ka maikaʻi me ka lāʻau i ʻae ʻia i kēia manawa he kūlana. ʻO ka hapa nui o ka holomua i hana ʻia i ka ʻike ʻana i ka curative therapy no nā maʻi ʻaʻa kamaliʻi i hoʻokō ʻia e nā hoʻokolohua lapaʻau. Loaʻa nā ʻike e pili ana i nā hoʻokolohua hoʻokolohua mau mai ka pūnaewele NCI.
Loaʻa nā hoʻomaikaʻi nui i ke ola no nā keiki a me nā ʻōpio me ka maʻi ʻaʻai. Ma waena o 1975 a me 2010, ua emi iho ka make ʻana o ka maʻi ʻaʻa kamaliʻi ma mua o 50%. [3] Pono nā mea ola ʻōpio a me nā ʻōpio ʻōpio e pono ke kiaʻi pono ʻana no ka mea e hoʻomau a hoʻomōhala paha nā hopena ʻaoʻao maʻi ʻaukake i mau mahina a i ʻole mau makahiki ma hope o ka lapaʻau ʻana. (E nānā i ka hōʻuluʻulu e pili ana i nā hopena hope o ka mālama ʻana no ka maʻi ʻaʻa kamaliʻi no ka ʻike kikoʻī e pili ana i ka hanana, ʻano, a me ka nānā ʻana i nā hopena hope loa o nā keiki maʻi ʻōpio ʻōpio.)
He maʻi laha ʻole ka maʻi ʻaʻai kamaliʻi, me kahi o 15,000 mau hihia i ʻike ʻia i kēlā me kēia makahiki ma ʻAmelika Hui Pū ʻIa i kēlā me kēia kanaka ma mua o 20 mau makahiki. [4] ʻO ka US Rare Diseases Act o 2002 e wehewehe nei i kahi maʻi laha ʻole e like me ka mea e loli i nā heluna i ʻoi aku ka liʻiliʻi ma mua o 200,000 poʻe. No laila, kuhi ʻia nā maʻi maʻi pediatric āpau loa.
ʻAʻole kūlike ka inoa o kahi tumo laha ʻole i waena o nā pūʻulu pediatric a me nā mākua. Ua wehewehe ʻia nā maʻi ʻaʻai kūpilikiʻi makua e like me kēlā me ka hanana makahiki o ka liʻiliʻi ma mua o ʻeono mau hihia no 100,000 mau kānaka, a ua manaʻo ʻia e hōʻea i 24% o nā maʻi āpau i ʻike ʻia ma ka European Union a ma kahi o 20% o nā maʻi āpau i ʻike ʻia ma ʻAmelika Hui Pū ʻIa. . [5,6] Eia kekahi, ʻaʻohe kūlike ke kau ʻana o kahi pediatric rare tumor i waena o nā hui honua, penei:
- ʻO ka papahana hui Italia ma nā tumors pediatric laha ʻole (Tumori Rari ma Eta Pediatrica [TREP]) e wehewehe nei i kahi tumo pediatric rare me he mea lā he emi ma lalo o ʻelua mau hihia ma ka 1 miliona mau kānaka i kēlā me kēia makahiki a ʻaʻole i hoʻokomo ʻia i loko o nā hoʻokolohua hoʻokolohua ʻē aʻe. [7 ]
- Ua koho ka ʻOhana Oncology Group (COG) e wehewehe i nā maʻi maʻi pediatric laha ʻole e like me nā mea i helu ʻia i ka International Classification of Childhood Cancer subgroup XI, e komo pū ana me ka maʻi ʻaʻai thyroid, melanoma a me nā maʻi ʻili nonmelanoma, a me nā ʻano carcinomas (eg, adrenocortical carcinoma, nasopharyngeal carcinoma, a me ka hapanui o nā carcinomas ʻano makua e like me ka maʻi ʻaʻai umauma, maʻi ʻaʻai kala, a pēlā aku.). [8] Kuhi kēia mau diagnoses ma kahi o 4% o nā maʻi ʻaʻai i loaʻa i nā keiki 0 a 14 mau makahiki, ke hoʻohālikelike ʻia me 20% o nā maʻi ʻaʻai i ʻike ʻia i nā ʻōpio 15 a 19 mau makahiki (e nānā i nā Kiʻi 1 a me 2).
ʻO ka hapanui o nā maʻi ʻino ma loko o ka subgroup XI he melanomas a i ʻole ka maʻi ʻaʻai thyroid, me ke koena o nā puʻukū pūʻulu XI i koe no 1.3% wale nō o nā maʻi ʻino i nā keiki mai 0 a 14 mau makahiki a me 5.3% o nā maʻi ʻino i nā ʻōpio 15 a 19 mau makahiki.
He paʻakikī loa kēia mau maʻi ʻaʻai laha ʻole e hoʻopaʻa no ka haʻahaʻa o nā maʻi me nā hōʻike pākahi, ka nui o nā maʻi ʻaʻai laha ʻole i ka heluna ʻōpio, a me ka nele o nā hoʻokolohua hoʻokolohua no nā ʻōpio me nā maʻi ʻaʻai liʻiliʻi e like me melanoma.
Ua hoʻohana kekahi mau mea noiʻi i ka hōkeo ʻikepili nui, e like me ka Surveillance, Epidemiology, a me nā hopena hopena (SEER) a me ka National Cancer Database, e loaʻa ai ka ʻike hou aku e pili ana i kēia mau maʻi ʻōpio liʻiliʻi. Eia nō naʻe, kaupalena ʻia kēia mau ʻike waihona. Ua hoʻomohala ʻia e COG a me nā hui honua ʻē aʻe, nā papahana e hoʻopaʻa i nā kanesa pediatric kakaikahi e like me ka International Society of Pediatric Oncology (Société Internationale DʻOncologie Pédiatrique [SIOP]). ʻO ka Gesellschaft für Pädiatrische Onkologie und Hämatologie (GPOH) kahi papahana tumo i hoʻokumu ʻia ma Kelemania i ka makahiki 2006. [10] Ua hoʻokumu ʻia ka TREP ma 2000, [7] a ua hoʻokumu ʻia ka Polokalamu Pediatric Rare Tumor Study Group i ka makahiki 2002. [11] I ʻEulopa, nā pūʻulu ʻimi laha nui e aʻo ai i nā hui mai Palani, Kelemania, ʻItalia, Polani a ua hui pū ʻo United Kingdom i loko o ka European Study Cooperative Group Group on Pediatric Rare Tumors (EXPeRT), e kia ana i ka laulima hui pū ʻana a me nā anamanaʻo o nā mea kūpilikiʻi kūpilikiʻi. [12] Ma loko o ka COG, ua kau ka hana i ka hoʻonui ʻana i ka accrual i nā kākau inoa COG (Project Every Child) a me nā kuʻina panakō tumo, ke hoʻomohala nei i nā hoʻokolohua hoʻokolohua lima hoʻokahi, a me ka hoʻonui ʻana i ka laulima me nā hoʻāʻo o nā hui hui ʻōpio. [13] Ua hōʻike kikoʻī ʻia nā hana a me nā pilikia o kēia hana. [8,14] a me ka hoʻonui ʻana i ka laulima ʻana me nā hoʻāʻo o nā hui kōkua kūpuna. [13] Ua hōʻike kikoʻī ʻia nā hana a me nā pilikia o kēia hana. [8,14] a me ka hoʻonui ʻana i ka laulima ʻana me nā hoʻāʻo o nā hui kōkua kūpuna. [13] Ua hōʻike kikoʻī ʻia nā hana a me nā pilikia o kēia hana. [8,14]
ʻO nā tumors i helu ʻia i kēia hōʻuluʻulu ʻokoʻa loa ia; hoʻonohonoho ʻia lākou i ke kaʻina anatomic e iho mai ana, mai nā tumors pinepine ʻole o ke poʻo a me ka ʻāʻī a hiki i nā tumors laha ʻole o ka ʻaoʻao urogenital a me ka ʻili. ʻAʻohe lawa kēia mau maʻi maʻi āpau i ʻike ka hapa nui o nā haukapila pediatric ma mua o ka lima o kekahi mau histology i nā makahiki he nui. ʻO ka hapa nui o nā mōʻaukala i helu ʻia ma aneʻi e hana pinepine ʻia i nā mākua. ʻIke ʻia e pili ana i kēia mau tumors i nā kumuwaiwai e pili ana i nā mākua me ka maʻi ʻaʻai.
E hoʻohā i ka ʻōlelo hoʻohou auto-refresher