小児ナルコレプシー患者報告アウトカム尺度(PN-PROs)の開発
Grace Y Wang1, Jennifer Worhach1, Eric S Zhou1,2
1Department of Neurology, Boston Children's Hospital, Boston, MA, United States.
まとめ
日常生活への影響を評価するために、小児ナルコレプシーの新しい患者報告アウトカム尺度が開発されました。この小児ナルコレプシー患者報告アウトカム(PN-PROs)尺度は、慢性神経疾患の管理に役立ちます。
背景:
- 小児ナルコレプシーは、子供および青年期に影響を与える慢性神経疾患です。
- 効果的な管理には、生活の質を最適化するために、症状の頻度と重症度を定期的に評価する必要があります。
- 現在、小児ナルコレプシーの日常生活への影響および疾患負担を特に評価する患者報告アウトカム(PROs)尺度は存在しません。
結論:
- 小児ナルコレプシー患者報告アウトカム(PN-PROs)尺度は、専門家の洞察、文献、および患者/家族の経験を使用して開発されました。
- PN-PROs尺度は、疾患管理の貴重な縦断的評価を提供すると予想されます。
- この尺度は、小児ナルコレプシーの臨床診療および研究におけるアウトカム評価を標準化することを目的としています。
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