天疱瘡・類天疱瘡患者の日常生活における困難感

Difficulties Experienced in Daily Life by Patients with Pemphigus and Pemphigoid

要旨

　目的：天疱瘡・類天疱瘡患者が発症初期から現在に至るまでに体験した日常生活における困難感を明らかにする．

　方法：13名の患者を対象に半構造化インタビューを行い，質的記述的に分析した．

　結果：身体症状の強い時期は，【症状により日常生活行動に支障を来す】【患部の必要な処置に伴い痛みや負担を感じる】が，治療によりこれらの大部分は軽快し，【ステロイド療法の副作用により日常生活行動に制約がある】といった治療により軽快しない困難感を生じていた．また，【希少疾患であること，他者に理解されないことで不安，孤独を感じる】【病気や治療，再燃に対する不安，恐れを感じる】【症状や治療の副作用による影響で人付き合いが難しい】【病気により学業，就職，仕事が思うようにいかない】心理的・社会的な困難を感じていた．

　結論：天疱瘡・類天疱瘡患者は，症状や治療，疾患の希少性・難治性，症状の可視性や他者に理解されないことでの困難感を抱いていた．

　Purpose: The study aim was to understand difficulties experienced in daily life from the early stage of onset to the present by patients with pemphigus and pemphigoid.

　Methods: We conducted semi-structured interviews with 13 patients with pemphigus or pemphigoid, and analyzed the data qualitatively and descriptively.

　Results: During periods when their physical symptoms were strong, patients experienced difficulties such as “symptoms interfering with daily activities”, and “feelings of pain and burden when the affected area required treatment”, even though these difficulties were alleviated by the treatment. Patients also experienced difficulties such as “restrictions in daily activities owing to side effects of steroid therapy”. Furthermore, patients reported psychological and social difficulties experienced “anxious and lonely because of their rare disease and lack of understanding by others”, “anxious and afraid because of the disease, treatments, and relapse”, or “difficulty in socializing with others owing to symptoms and treatment side effects”, and “disturbances in schoolwork, employment, and jobs owing to the disease”.

　Conclusion: Patients with pemphigus or pemphigoid experienced difficulties owing to the effects of symptoms and treatment, the rarity and intractability of the disease, the visibility of the symptoms, and the lack of understanding by others.