中等症以上の天疱瘡・類天疱瘡患者の治療と生活における認識：質的研究

Perception of Treatment and Daily Life of Patients With Moderate-To-Severe Pemphigus and Pemphigoid: A Qualitative Study

要旨

　目的：天疱瘡・類天疱瘡は希少疾患であり，中等症以上の患者はステロイド内服を主とした入院治療を要し，身体面に限らず様々な影響を受ける可能性がある．本研究では，中等症以上の天疱瘡・類天疱瘡患者が発症後から治療と生活していく中での認識を明らかにする．

　方法：中等症以上の天疱瘡・類天疱瘡患者15名に半構造化面接を行い，質的記述的に分析した．

　結果：研究参加者の治療と生活する中での認識として【日常生活への支障】【難治性の病により先行きが不透明】【治療と社会活動の両立による辛さ】【療養生活を契機とした前向きな気づき】の4つのカテゴリーが導かれた．

　結論：天疱瘡・類天疱瘡患者は，難病であること及び治療の特性により，心身のダメージを経験するだけでなく，病と共存する過程で自ら前向きな気づきを獲得していた．それには，周囲の理解が必要となることが示唆された．

　Objective: Pemphigus and pemphigoid are rare diseases. Patients with moderate-to-severe symptoms require hospital treatment, primarily involving systemic steroids, and may be affected in various ways, not just physically. The aim of this study was to clarify the perceptions of patients with moderate-to-severe pemphigus and pemphigoid as they undergo treatment and continue with their lives.

　Methods: Semi-structured interviews were conducted with 15 patients with moderate-to-severe pemphigus and pemphigoid, and a qualitative, descriptive analysis was performed.

　Results: The participants' perceptions during their treatment and daily life were classified into four categories: interference with daily life, uncertainty due to the refractory nature of the disease, difficulty balancing treatment and social activities, and positive self-awareness triggered by their recuperation.

　Conclusion: Patients with pemphigus and pemphigoid experienced physical and mental adverse effects of the incurable disease and its treatment; however, while living with the disease, they gained positive self-awareness. This suggests that understanding from surrounding individuals is necessary for patients.