Assessment of self-/parent-reported quality of life in Japanese children with haemophilia using the Japanese version of KIDSCREEN-52.

• 資料種別: 博士論文
• タイトル: Assessment of self-/parent-reported quality of life in Japanese children with haemophilia using the Japanese version of KIDSCREEN-52.
• 著者・編者: Furuichi, Yasuko; Nogami, Keiji; Yada, Koji; Nezu, Satoko; Obayashi, Kenji; Saeki, Keigo; Kurumatani, Norio; Nakajima, Mitsuru; Kinoshita, Seiji; Shima, Midori
• 著者標目: Furuichi, Yasuko; Nogami, Keiji; Yada, Koji; Nezu, Satoko; Obayashi, Kenji; Saeki, Keigo; Kurumatani, Norio; Nakajima, Mitsuru; Kinoshita, Seiji; Shima, Midori
• 出版事項: John Wiley & Sons Ltd.
• 出版年月日等: 2020-03
• 出版年（W3CDTF）: 2020-03
• 並列タイトル等: 日本における小児血友病患者の日本語版KIDSCREEN-52を用いたQOLの自己評価および保護者による評価
• タイトル（掲載誌）: Haemophilia
• 巻号年月日等（掲載誌）: 26 2
• 掲載巻: 26
• 掲載号: 2
• 掲載ページ: 243-250
• ISSN（掲載誌）: ISSN : 1351-8216
• 授与機関名: 奈良県立医科大学
• 授与年月日: 2020-06-30
• 報告番号: 甲第747号
• 学位: 博士（医学）
• 本文の言語コード: eng
• 件名標目: children; haemophilia; health-related quality of life; self-assessment; survey
• 対象利用者: 一般
• 一般注記: type:Thesis; Introduction: Assessing health-related quality of life (HRQOL) is critical for providing comprehensive clinical care to patients with haemophilia. HRQOL in individuals with similar cultural backgrounds should be compared using internationally standardized, generic questionnaires. Aim: To evaluate self-/parent-assessed HRQOL in Japanese children and adolescents with haemophilia A or B. Methods: Children and adolescents aged 8-18 years were enrolled. The haemophilia group comprised families with haemophilia, and the control group comprised those without chronic illness. HRQOL was assessed using the self-/parent-reported questionnaire KIDSCREEN-52, the Japanese version. The Oslo 3-Item Social Support Scale was investigated. Results: The questionnaire was completed by 36 families in the haemophilia group and 160 parents and children in the control group. Haemophilia children aged 8-12 years had lower scores for 'moods and emotions' than control children; the parents had lower scores in the haemophilia group than in the control group for 'moods and emotions', 'social support and peers', and 'school environment'. No significant differences in HRQOL were observed between both groups of adolescents aged 13-18 years or their parents. Neck-shoulder pain was associated with a low psychological state, including 'self-perception', but other joint pains did not affect the outcomes of the HRQOL indices. Social support weaknesses were associated with low physical and psychological states, whereas unexpected hospital visits identified low values for 'self-perception', 'autonomy', and 'school environment'. Conclusion: Proactive mental and clinical care in haemophilia families, especially with young children, will foster a better environment for patients and their parents and ease concerns about progress in haemophilia.; 博士（医学）・甲第747号・令和2年6月30日; © 2020 John Wiley & Sons Ltd.; This is the peer reviewed version of the following article: [https://onlinelibrary.wiley.com/doi/full/10.1111/hae.13945], which has been published in final form at [https://doi.org/10.1111/hae.13945]. This article may be used for non-commercial purposes in accordance with Wiley Terms and Conditions for Use of Self-Archived Versions.; identifier:Haemophilia Vol.26 No.2 p.243-250 (2020 Mar); identifier:13518216; identifier:http://ginmu.naramed-u.ac.jp/dspace/handle/10564/3754; identifier:Haemophilia, 26(2): 243-250
• オンライン閲覧公開範囲: インターネット公開
• 関連情報（DOI）: 10.1111/hae.13945
• 連携機関・データベース: 国立情報学研究所 : 学術機関リポジトリデータベース（IRDB）（機関リポジトリ）; https://irdb.nii.ac.jp
• 提供元機関・データベース: 奈良県立医科大学 : 奈良県立医科大学機関リポジトリ GINMU

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http://ginmu.naramed-u.ac.jp/dspace/bitstream/10564/3754/1/01%e7%94%b2747%e6%9c%ac%e6%96%87%e3%81%ae%e8%a6%81%e6%97%a8.pdf fulltext

http://ginmu.naramed-u.ac.jp/dspace/bitstream/10564/3754/2/02%e7%94%b2747%e5%af%a9%e6%9f%bb%e8%a6%81%e6%97%a8.pdf fulltext

http://ginmu.naramed-u.ac.jp/dspace/bitstream/10564/3754/6/03%e7%94%b2747%e6%9c%ac%e6%96%87.pdf fulltext