{"created":"2023-06-19T06:41:59.788703+00:00","id":370,"links":{},"metadata":{"_buckets":{"deposit":"0d1b1718-3dc0-4842-b1fe-0a0b81797289"},"_deposit":{"created_by":2,"id":"370","owners":[2],"pid":{"revision_id":0,"type":"depid","value":"370"},"status":"published"},"_oai":{"id":"oai:opcnr.repo.nii.ac.jp:00000370","sets":["45"]},"author_link":["2476","2478","2541","2540","2536","2497","97","2537","2539"],"item_10001_biblio_info_7":{"attribute_name":"書誌情報","attribute_value_mlt":[{"bibliographicIssueDates":{"bibliographicIssueDate":"2008","bibliographicIssueDateType":"Issued"},"bibliographicIssueNumber":"2","bibliographicPageEnd":"341","bibliographicPageStart":"333","bibliographicVolumeNumber":"17","bibliographic_titles":[{"bibliographic_title":"川崎医療福祉学会誌"},{"bibliographic_title":"KAWASAKI MEDICAL WELFARE JOURNAL","bibliographic_titleLang":"en"}]}]},"item_10001_description_5":{"attribute_name":"抄録","attribute_value_mlt":[{"subitem_description":"【目的】本研究では，厚生労働科学研究・特定疾患の疫学研究における地域ベースコホート研究上の全登録特定疾患において，個々の疾患における患者のQOLの特徴を観察し，共通点を見出すことを目的とした．【方法】全国37箇所の保健所において特定疾患医療受給をしている者を対象とした．一般的QOL尺度である36各下位尺度のスコアを変数として，疾患別のクラスター分析を行ない，グループ分けをした．その後，各グループにおける特徴を，特定疾患患者に共通のQOL尺度の得点，ADL，年齢，性別などから分析した．【結果】2003\\n年までの研究期間に通算して，SF-36と特定疾患患者に共通のQOL尺度の両方に回答したものは32疾患，2,380名であった．疾患系統別に見ると，神経-筋疾患患者が1,560名，免疫系疾患患者が153\\n名，消化器系疾患が120名，皮膚・結合組織疾患が65名，血液系疾患患者が53\\n名，その他（不明含む）429名であった．クラスター分析の結果，QOLの傾向別に特定疾患を4グループに分類することができた．8つの下位尺度得点が一様に国民標準値と比較して低い値を示すが，志気は保っているグループ1，同様に全体的に低い値を示し，特に身体機能においての低値が顕著で，志気や疾患の受容においても問題が見られるグループ2，社会生活機能において，低い評価が見られるが，その他の項目においては，国民標準値と同等の項目もあり，他群と比較すれば良好であるグループ\\n3，全下位尺度においてQOL得点が非常に低く，特に身体機能は，国民標準値と比較して著しく低い値が見られたグループ4の4つである．【結論】現在45の特定疾患は血液系疾患，免疫系疾患，内分泌系疾患というような系統分類に基づく疾患群として扱われるが，いくつかの疾患においては，そうした疾患群による分類と患者自身が評価する主観的健康（QOL）のプロファイルによるグループとの間には隔たりがあり，患者のケアや福祉政策においては後者の参照が有効な手段であることが示唆された．|In this research, we observed the subjective health features (quality of life, QOL) of patients who had registered in the database of the regional cohort study and had an \"intractable\" disease. The study population comprised patients receiving public financial aid in 37 health centers across the country. The epidemiology and health welfare information questionnaire (health status, public welfare and health service use, working status, smoking and drinking habits, etc., and ADL) and the QOL questionnaires (SF-36 and the QOL scale for intractable disease patients) were used. The number of patients who answered both QOL questionnaires SF-36 and the QOL scale for the intractable disease patients was 2380 (32 diseases); these included 1560 patients with diseases of the neural muscle, 153 with immunity system diseases, 120 with digestive system diseases, 65 with skin and connective tissue diseases, 53 with blood diseases, and 429 with other diseases. The score of SF-36 on each subscale and the QOL scale for intractable disease patients varied greatly, and the cluster analysis was realized acccording to the subscale score of SF-36. Hence, patients were classified into four proups according to the QOL profile. A low value in all subscales, but with high morals, was generally observed among the patients belonging to group 1. A profile similar to that of group 1 was observed in all subscales of group 2, with remarkably low scores in physical functioning and poor acceptance of diseases and morals. The patients in group 3 showed some subscale scores that were equal to the national standard values, although the overall Q0L score was lower, particularly in social functioning. In group 4, all subscales demonstrated remarkably low scores as compared with the national standards or those among other groups, particularly in physical functioning. There was a gap in the results between the groups when they were classified by the Q0L profile and the etiological group. It was suggested that the reference to the former classification is more appropriate in health care and welfare policy, though are different from the disease group based on etiology.","subitem_description_type":"Abstract"}]},"item_10001_rights_15":{"attribute_name":"権利","attribute_value_mlt":[{"subitem_rights":"川崎医療福祉学会"}]},"item_10001_source_id_9":{"attribute_name":"ISSN","attribute_value_mlt":[{"subitem_source_identifier":"0917-4605","subitem_source_identifier_type":"ISSN"}]},"item_creator":{"attribute_name":"著者","attribute_type":"creator","attribute_value_mlt":[{"creatorNames":[{"creatorName":"三徳, 和子"},{"creatorName":"ミトク, カズコ","creatorNameLang":"ja-Kana"},{"creatorName":"Mitoku, Kazuko","creatorNameLang":"en"}],"nameIdentifiers":[{"nameIdentifier":"2536","nameIdentifierScheme":"WEKO"}]},{"creatorNames":[{"creatorName":"松田, 智大"},{"creatorName":"マツダ, トモヒロ","creatorNameLang":"ja-Kana"},{"creatorName":"Matsuda, Tomohiro","creatorNameLang":"en"}],"nameIdentifiers":[{"nameIdentifier":"2537","nameIdentifierScheme":"WEKO"}]},{"creatorNames":[{"creatorName":"新城, 正紀"},{"creatorName":"シンジョウ, マサキ","creatorNameLang":"ja-Kana"},{"creatorName":"Shinjo, Masaki","creatorNameLang":"en"}],"nameIdentifiers":[{"nameIdentifier":"97","nameIdentifierScheme":"WEKO"},{"nameIdentifier":"50244314","nameIdentifierScheme":"e-Rad","nameIdentifierURI":"https://kaken.nii.ac.jp/ja/search/?qm=50244314"}]},{"creatorNames":[{"creatorName":"眞崎, 直子"},{"creatorName":"マサキ, ナオコ","creatorNameLang":"ja-Kana"},{"creatorName":"Masaki, Naoko","creatorNameLang":"en"}],"nameIdentifiers":[{"nameIdentifier":"2539","nameIdentifierScheme":"WEKO"}]},{"creatorNames":[{"creatorName":"平良, セツ子"},{"creatorName":"タイラ, セツコ","creatorNameLang":"ja-Kana"},{"creatorName":"Taira, Setsuko","creatorNameLang":"en"}],"nameIdentifiers":[{"nameIdentifier":"2540","nameIdentifierScheme":"WEKO"}]},{"creatorNames":[{"creatorName":"丹野, 高三"},{"creatorName":"タンノ, コウゾウ","creatorNameLang":"ja-Kana"},{"creatorName":"Tanno, Kouzou","creatorNameLang":"en"}],"nameIdentifiers":[{"nameIdentifier":"2541","nameIdentifierScheme":"WEKO"}]},{"creatorNames":[{"creatorName":"簑輪, 眞澄"},{"creatorName":"ミノワ, マスミ","creatorNameLang":"ja-Kana"}],"nameIdentifiers":[{"nameIdentifier":"2476","nameIdentifierScheme":"WEKO"}]},{"creatorNames":[{"creatorName":"坂田, 清美"},{"creatorName":"サカタ, キヨミ","creatorNameLang":"ja-Kana"},{"creatorName":"Sakata, Kiyomi","creatorNameLang":"en"}],"nameIdentifiers":[{"nameIdentifier":"2478","nameIdentifierScheme":"WEKO"}]},{"creatorNames":[{"creatorName":"MlNOWA, Masumi","creatorNameLang":"en"}],"nameIdentifiers":[{"nameIdentifier":"2497","nameIdentifierScheme":"WEKO"}]}]},"item_files":{"attribute_name":"ファイル情報","attribute_type":"file","attribute_value_mlt":[{"accessrole":"open_date","date":[{"dateType":"Available","dateValue":"2021-09-24"}],"displaytype":"detail","filename":"Vol17No2p333.pdf","filesize":[{"value":"1.4 MB"}],"format":"application/pdf","licensetype":"license_note","mimetype":"application/pdf","url":{"label":"Vol17No2p333.pdf","url":"https://opcnr.repo.nii.ac.jp/record/370/files/Vol17No2p333.pdf"},"version_id":"c0d0fb43-9051-4fa4-a53a-db7f7123a2ff"}]},"item_keyword":{"attribute_name":"キーワード","attribute_value_mlt":[{"subitem_subject":"intractable disease","subitem_subject_scheme":"Other"},{"subitem_subject":"QOL","subitem_subject_scheme":"Other"},{"subitem_subject":"SF-36","subitem_subject_scheme":"Other"},{"subitem_subject":"intractable disease","subitem_subject_language":"en","subitem_subject_scheme":"Other"},{"subitem_subject":"QOL","subitem_subject_language":"en","subitem_subject_scheme":"Other"},{"subitem_subject":"SF-36","subitem_subject_language":"en","subitem_subject_scheme":"Other"}]},"item_language":{"attribute_name":"言語","attribute_value_mlt":[{"subitem_language":"jpn"}]},"item_resource_type":{"attribute_name":"資源タイプ","attribute_value_mlt":[{"resourcetype":"journal article","resourceuri":"http://purl.org/coar/resource_type/c_6501"}]},"item_title":"難病疾患患者における包括的QOLの特徴と類似点","item_titles":{"attribute_name":"タイトル","attribute_value_mlt":[{"subitem_title":"難病疾患患者における包括的QOLの特徴と類似点"},{"subitem_title":"Features and Similarities in QOL Profiles of Patients with Intractable Diseases","subitem_title_language":"en"}]},"item_type_id":"10001","owner":"2","path":["45"],"pubdate":{"attribute_name":"公開日","attribute_value":"2021-09-24"},"publish_date":"2021-09-24","publish_status":"0","recid":"370","relation_version_is_last":true,"title":["難病疾患患者における包括的QOLの特徴と類似点"],"weko_creator_id":"2","weko_shared_id":2},"updated":"2023-06-19T06:51:54.841139+00:00"}