大疱性表皮松解症（EB）患者的轶事和病例报告表明，基于大麻素的药物（CBMs）可以减轻疼痛和瘙痒并改善伤口愈合。在EB患者人群中没有CBM使用的特征。
为了评估EB患者的CBM使用情况，包括CBM类型，对症状的影响(例如，疼痛和瘙痒)，疾病过程(例如，起泡，伤口,和炎症），福祉(例如，睡眠,食欲)和伴随药物。
说英语的EB患者或护理人员完成了在线国际，匿名,关于煤层气使用的横断面调查。受访者报告了建立信任措施的类型，后续影响，包括感知的EB症状改变，药物使用的变化，和副作用。
来自五大洲的71例EB患者报告使用或曾经使用CBM治疗他们的EB。缺失的问题回答介于0（0％）和33（46％）之间。大多数使用超过一种CBM制剂(平均值:2.4±1.5)和给药途径(平均值:2.1±1.1)。局部和摄入是最常见的途径。回顾性报道，使用CBM后疼痛和瘙痒减少3分（量表：0-10；两者p<0.001）。大多数人报告说，使用CBM改善了他们的总体EB症状(95%)，疼痛（94%），瘙痒（91%）和伤口愈合（81%）。大多数参与者（79％）报告止痛药的使用减少。最常见的副作用是口干(44%)。
建立信任措施可以改善疼痛的感觉，瘙痒,伤口愈合，和EB患者的健康和减少合并用药。然而，这些数据无法证明使用CBM和减轻上述症状之间的直接关系.因此,在EB中使用药学标准化CBM制剂的未来对照研究有必要描述CBM的风险和益处.
Epidermolysis bullosa (EB) patient anecdotes and case reports indicate that cannabinoid-based medicines (CBMs) may alleviate pain and pruritus and improve wound healing. CBM use has not been characterized in the EB patient population.
To evaluate CBM use among EB patients, including CBM types, effects on symptoms (e.g., pain and pruritus), disease process (e.g., blistering, wounds, and inflammation), well-being (e.g., sleep, appetite) and concomitant medications.
English-speaking EB patients or caregivers completed an online international, anonymous, cross-sectional survey regarding CBM use. Respondents reported the types of CBMs, subsequent effects including perceived EB symptom alteration, changes in medication use, and side effects.
Seventy-one EB patients from five continents reported using or having used CBMs to treat their EB. Missing question responses ranged between 0 (0%) and 33 (46%). Most used more than one CBM preparation (mean: 2.4 ± 1.5) and route of administration (mean: 2.1 ± 1.1). Topical and ingested were the most common routes. Pain and pruritus were reported retrospectively to decrease by 3 points (scale: 0-10; p < 0.001 for both) after CBM use. Most reported that CBM use improved their overall EB symptoms (95%), pain (94%), pruritus (91%) and wound healing (81%). Most participants (79%) reported decreased use of pain medications. The most common side-effect was dry mouth (44%).
CBMs improve the perception of pain, pruritus, wound healing, and well-being in EB patients and reduced concomitant medication use. Nevertheless, a direct relation between the use of CBMs and reduction of the above-mentioned symptoms cannot be proven by these data. Therefore, future controlled studies using pharmaceutically standardised CBM preparations in EB are warranted to delineate the risks and benefits of CBMs.
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