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[복지위 안명옥의원 보도자료]희귀·난치성 질환자(1천여명)설문조

蹂대룄?먮즺??紐????섏썝
TEL : 784-0929, 788-2174 FAX : 788-3234
www.amo21.net(?쒕굹?쇰떦)
2005??0?? 6??



?ш?쨌?쒖튂??吏덊솚??1泥쒖뿬紐??ㅻЦ議곗궗
- 51.6%媛? ?섎즺鍮?怨쇱엵吏?異쒕줈 媛??뺥빐泥??꾧린 寃쏀뿕
- 2.4%留뚯씠 蹂듭?遺?/怨듦났湲곌? ?듯빐 吏덊솚?뺣낫 ?듬뱷
-?뚰솚?먯? ?꾨Ц媛?媛? ?쒖떆?섎뒗 ?ш??쒖튂?깆쭏???뺤콉怨쇱젣?띾컻媛?



- ?ш?쨌?쒖튂??吏덊솚?먮뱾??遺??댄븯??寃쎌젣??遺??댁? 怨쇱쨷?쒕뜲 鍮꾪빐 ?댁뿉 ?????뺣???吏??먯? 遺?
?ㅽ븳 寃껋쑝濡??쒕윭?щ떎.



- ?쒕굹?쇰떦 ?덈챸?μ쓽??蹂닿굔蹂듭??꾩썝???? 9??1?쇰???20?쇨컙 ?ш?쨌?쒖튂?깆쭏?섏옄 969紐낆쓣 ??
?곸쑝濡??ㅻЦ議곗궗瑜??ㅼ떆?섏???



- ?ㅻЦ議곗궗 寃곌낵, ?ш?쨌?쒖튂??吏덊솚?쇰줈 吏?異쒕릺???섎즺鍮꾧? ?곌컙 300留뚯썝???섎뒗 寃쎌슦??270紐?
?쇰줈 ?묐떟?먯쓽 28%???ы뻽?? ?뱁엳 ?섎즺鍮?怨쇱엵吏?異쒕줈 媛??뺥빐泥댁쓽 ?꾧린瑜?寃쏀뿕???곸씠 ?덈뒓??
??吏덈Ц?먮뒗 ?묐떟?먯쓽 51.6%??498紐낆씠 ?섍렇?뉖떎?숆퀬 ?듯븯???ш?쨌?쒖튂??吏덊솚?쇰줈 ?명븳 寃쎌젣??
遺??댁씠 怨쇱쨷?⑥쓣 蹂댁뿬以щ떎.



- ?쒗렪 ?ш?쨌?쒖튂??吏덊솚 愿????뺣낫瑜??듬뱷?섎뒗 寃쎈줈濡쒕뒗 ?쒓뎅?ш??쒖튂?깆쭏?섏뿰?⑺쉶 ???먮え
?꾩쓣 ?듯빐 ?듬뱷?섎뒗 寃쎌슦媛? 79.5%??怨? 蹂닿굔蹂듭?遺? 諛?怨듦났湲곌????듯빐 ?듬뱷?쒕떎怨??듯븳 寃쎌슦
??2.4%??遺덇낵?덈떎. ???뺣?媛? ?섍퀬 ?덈뒗 ?ш?쨌?쒖튂?깆쭏?섍????섎즺鍮?吏??먯궗?낆쓣 ?뚭퀬 ?덈뒓
?먮뒗 吏덈Ц?먮뒗 43.3%媛? ??紐⑤Ⅴ怨??덈떎怨??듯빐 援?? 吏덊솚愿?由ъ궗?낆쓽 ?덉젏??蹂댁뿬以щ떎.




<?섎즺鍮꾩쓽 怨쇱엵吏?異쒕줈 ?명븳 媛??뺥빐泥??꾪뿕 寃쏀뿕??




- ?덈챸???섏썝?? ?쒗씗洹??쒖튂?깆쭏?섏? 吏꾨떒???대졄怨?吏덊솚???섎컲?섎뒗 湲곕뒫?μ븷媛? ?ш컖?섏뿬 ??
?먯? 媛?議깅뱾??寃る뒗 寃쎌젣??怨좏넻??留됰??섎떎?앷퀬 諛앺엳硫댁꽌 ?쒖씠踰?議곗궗瑜??좊?濡??섎즺鍮?吏???
諛?嫄닿컯蹂댄뿕 ?곸슜踰붿쐞瑜??뺣??섍퀬, ?ш??쒖튂??吏덊솚?먮? ?μ븷濡??깅줉?섎뒗 ?깆쓽 蹂듭?議곗튂瑜?媛?
援ы븷 ?꾩슂媛? ?덈떎?앷퀬 諛앺삍??



- ???덈챸???섏썝?? ?쒗씗洹??쒖튂??吏덊솚??遺꾪룷??洹쒕え????????븰議곗궗??臾쇰줎 吏덊솚?먯뿉 ????
湲곕낯?곸씤 ?ㅽ깭議곗궗議곗감 ?대(?댁?吏? ?딅뒗 媛??대뜲 ?대쾲 議곗궗媛? ?대(?댁죱?ㅲ?앸㈃???쒗씗洹??쒖튂?깆쭏
?섏? 諛쒖깮瑜좎씠 ??븘 誘쇨컙遺?臾몄쓽 吏곸젒???곌뎄?ъ옄瑜?湲곕??섍린 ?대젮?곕?濡?援????李⑥썝?먯꽌 愿?
???곌뎄湲곕컲??議곗꽦???꾩슂媛? ?덈떎?앷퀬 留먰뻽??



- ?덈챸???섏썝?? ?대쾲 ?ㅻЦ議곗궗 寃곌낵 遺꾩꽍??諛뷀깢?쇰줈 2005??10??6?쇈?뚰솚?먯? ?꾨Ц媛?媛? ?쒖떆
?섎뒗 ?ш?쨌?쒖튂?깆쭏???뺤콉怨쇱젣?띾씪???쒕ぉ???뺤콉?먮즺吏?2005 援?젙媛먯궗 ?먮즺吏??쒕━利?#9)
??諛쒓컙쨌諛고룷?덈떎.



<?ш??쒖튂?깆쭏??愿????뺣낫 ?듬뱷泥?諛??섎즺鍮?吏??먯궗?낆쓽 ?몄???
?뺣낫 ?듬뱷 梨꾨꼸 (?щ???959)%?? 泥??щ??섏씤吏??щ??몄?鍮꾩씤吏?96856.743.3?쒓뎅?ш??쒖튂
?깆쭏?섏뿰?⑺쉶 ???먮え??9.5?깅퀎?⑥옄46259.340.7?ъ옄50154.545.5臾댁쓳??40.060.0?명꽣??.7??
?밸?30?몃?留?8852.847.2蹂닿굔蹂듭?遺? 諛?怨듦났湲곌?2.430~39??9459.440.640?몄씠??7756.743.3
?명꽣??移댄럹1.8?숇젰以묒「?댄븯6245.254.8怨좎「39057.742.3?섏슦??.6??議??꾨Ц???ы븿)?댁긽
46157.542.5二쇱튂??.8媛?援щ떦
?뷀룊洹??뚮뱷???뚮뱷(100留뚯썝?뺣룄)30160.139.9蹂묒썝0.6蹂댄넻(200-300留뚯썝)56054.645.4?쒓뎅?ш???
?쏀뭹?쇳꽣0.5以묒긽?댁긽(400留뚯씠??8160.539.5湲고?5.1



- ?대쾲 議곗궗??2005??9??1?쇰???20?쇨퉴吏? ?ш??쒖튂?깆쭏?섏쓣 ?볤퀬 ?덈뒗 ?섏옄(?섏옄媛? ?묐떟??
湲??대젮??寃쎌슦 蹂댄샇????????臾댁옉?꾪몴蹂몄텛異?Random sampling)???듯빐 ?대쨪議뚮떎. ?좏슚??
臾몄? 969遺??대ʼn ?쒕낯?ㅼ감??95%, ?좊ː?섏??? 짹3.15%?대떎. ??遺꾩꽍?꾧뎄濡쒕뒗 SPSS 11.0????
?⑺뻽?쇰ʼn, ??ぉ蹂꾨줈 鍮덈룄遺꾩꽍, 援먯감遺꾩꽍, ?곴?遺꾩꽍???ㅼ떆?덈떎. ?묐떟?먯쓽 ?뱀꽦?? ?ㅼ쓬怨?媛숇떎.
<?ㅻЦ ?묐떟???뱀꽦>
?? 泥댁궗濡??삏9100.0?깅퀎?⑥옄46247.7?ъ옄50251.8臾댁쓳??0.5?곕졊??30?몃?留?8830.030~39??
39441.040?몄씠??7829.0?숇젰以묒「?댄븯626.8怨좎「39042.7??議??꾨Ц???ы븿)?댁긽46250.5媛?援щ떦
?뷀룊洹??뚮뱷???뚮뱷(100留뚯썝?뺣룄)30131.9蹂댄넻(200-300留뚯썝)56159.5以묒긽?댁긽(400留뚯씠??818.6<

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