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.
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.