Centre for Health Services Research, City, University of London , London, UK.
Moorfields Eye Hospital NHS Foundation Trust , London, UK.
Orbit. 2021 Apr;40(2):110-119. doi: 10.1080/01676830.2020.1733028. Epub 2020 Mar 1.
: Benign essential blepharospasm (BEB) and hemifacial spasm (HFS) are debilitating conditions causing spasms to the eyes and/or face and can significantly impact on quality of life (QoL). Initial research has highlighted potential factors impacting on QoL in BEB, but there remains a wealth of demographic, clinical, and psychosocial factors that may contribute to QoL but have not received attention. : Cross-sectional baseline data were collected before a single-masked randomised controlled trial from 130 adults with BEB and HFS recruited from botulinum toxin clinics at Moorfields Eye Hospital, London. QoL was measured using the 24-item Craniocervical Dystonia Questionnaire (CDQ24), which provides a total score and five subscale scores relating to , and . Treating clinicians provided clinical data. Hierarchical multiple regressions were performed on this baseline data to identify significant predictors of QoL. : and were the areas most impacted upon whilst patients experienced better adjustment in relation to , and scores were explained by the model (80% variance) and were significantly associated with appearance concerns, emotional representations, perceived negative consequences of the condition, mood, and dose of botulinum toxin. : Patients with BEB and HFS report a detrimental impact on ADL and perceived stigma in relation to their condition. Predominantly, individual perceptions and mood are associated with QoL in this population, rather than demographic and clinical factors, signifying areas to target in the design of future healthcare services or interventions.
良性特发性眼睑痉挛(BEB)和半面痉挛(HFS)是使人的眼睛和/或面部痉挛的使人虚弱的疾病,会极大地影响生活质量(QoL)。最初的研究强调了可能影响 BEB 患者 QoL 的因素,但仍有许多人口统计学、临床和社会心理因素可能会影响 QoL,但尚未得到关注。
本研究在一项单盲随机对照试验之前,从伦敦 Moorfields 眼科医院的肉毒杆菌毒素诊所招募了 130 名 BEB 和 HFS 成人,收集了他们的横断面基线数据。使用 24 项颅颈肌张力障碍问卷(CDQ24)测量生活质量,该问卷提供了一个总分和五个与 和 相关的子量表得分。治疗临床医生提供了临床数据。对该基线数据进行了层次多重回归分析,以确定生活质量的显著预测因素。
和 是患者体验到的受影响最大的领域,而在 和 方面,患者的调整能力更好,模型(80%的方差)解释了这些分数,并且与外观问题、情绪表现、对病情的负面认知、情绪和肉毒毒素剂量显著相关。
患有 BEB 和 HFS 的患者报告说,他们的日常生活活动和对病情的污名化受到了不利影响。主要是,个体的感知和情绪与该人群的生活质量相关,而不是人口统计学和临床因素,这表明在未来的医疗保健服务或干预措施的设计中需要关注这些方面。