Yukiko Miura, MSN, RN, CWCN, PHN, Faculty of Nursing, Tokyo Healthcare University, Tokyo, Japan.
Satoko Nakagomi, PhD, RN, RMW, CGC, Shinshu University, Nagano, Japan.
J Wound Ostomy Continence Nurs. 2021;48(5):453-459. doi: 10.1097/WON.0000000000000784.
Epidermolysis bullosa (EB) is a rare disease characterized by blistering and erosion of the skin and mucus membranes in response to minor external forces. Research focusing on daily skin care in EB patients is sparse. Two international clinical practice guidelines (CPGs) have been published in English, but they have not yet been translated into other languages such as Japanese. Therefore, their recommendations have not been adapted to multiple geographic regions in the world. This multiple case series describes our approach to the skin care of 3 Japanese patients with EB.
All 3 patients were diagnosed with genetic EB. A 13-year-old male patient had dominant dystrophic EB and suffered skin breakdown covering nearly 1% to 6% of his total body surface area (TBSA) during a 21-week data collection period. A 3-year-old male patient had EB simplex; he suffered skin breakdown covering 2% to 40% of his TBSA during a 36-week data collection period. The third case was a 5-year-old male patient with recessive dystrophic EB who experienced skin breakdown covering 2% to 40% of his TBSA during a 35-week data collection period. Blisters were punctured daily and treated with a soft silicone dressing. Daily application of moisturizers was undertaken to prevent the skin from drying out and itching.
Our experience suggests that application of published CPGs promoted wound healing. Nevertheless, given the nature of the disease, a complete resolution to an individual's vulnerability to skin lesions even with relatively minor trauma remains elusive. Additional research is needed to explore interventions for skin and ulcer care, along with symptom management, including pain and pruritus.
大疱性表皮松解症(EB)是一种罕见疾病,其特征是在轻微外力作用下出现皮肤和黏膜水疱和糜烂。针对 EB 患者日常皮肤护理的研究较少。有两项国际临床实践指南(CPGs)已经以英文发表,但尚未翻译成日语等其他语言,因此,其建议尚未适用于世界多个地区。本多项病例系列描述了我们对 3 例日本 EB 患者皮肤护理的方法。
所有 3 例患者均被诊断为遗传性 EB。13 岁男性患者患有显性营养不良性 EB,在 21 周数据收集期间,全身皮肤表面积(TBSA)的 1%至 6%发生皮肤破损。3 岁男性患者患有单纯性 EB,在 36 周数据收集期间,TBSA 的 2%至 40%发生皮肤破损。第三位患者是 5 岁男性隐性营养不良性 EB 患者,在 35 周数据收集期间,TBSA 的 2%至 40%发生皮肤破损。每天刺破水疱并用柔软的硅酮敷料处理。每天使用保湿剂以防止皮肤干燥和瘙痒。
我们的经验表明,应用已发表的 CPGs 可促进伤口愈合。然而,鉴于疾病的性质,即使是轻微创伤,个体对皮肤损伤的易感性也难以完全消除。需要进一步研究探索皮肤和溃疡护理以及症状管理(包括疼痛和瘙痒)的干预措施。