Discipline of Pharmacy, Faculty of Health, University of Canberra, Bruce, ACT, 2617, Australia.
Int J Clin Pharm. 2020 Dec;42(6):1507-1514. doi: 10.1007/s11096-020-01123-z. Epub 2020 Aug 17.
Background Charcot-Marie-Tooth disease is a common inherited neuropathy where patients may be sensitive to adverse effects of certain medicines; however, information about medication safety in this group of people is limited. Objective This study aimed to investigate the experience of Australian individuals with Charcot-Marie-Tooth disease in using medications, including perceived impact of drug-induced adverse effects. Secondarily, it aimed to determine whether individuals with Charcot-Marie-Tooth disease feel adequately supported to make decisions about medication safety. Setting Focus groups and interviews (face-to-face or telephone) of individuals with Charcot-Marie-Tooth disease in Australia. Method A mixed methods qualitative study was conducted between September 2015 and August 2016 using semi-structured interviews. Thematic analysis of interview transcripts was conducted independently by two researchers using inductive coding until concept saturation was achieved. Main outcome measure Perceptions of medicines safety in people with Charcot-Marie-Tooth disease, including barriers to making informed decisions about medication safety. Results Twenty-four adults with Charcot-Marie-Tooth disease participated. Anaesthetics (18%) and pregabalin (15%) were the medications most frequently reported as impacting on Charcot-Marie-Tooth symptoms. Participants sought medication information primarily from general practitioners or neurologists. The main barriers identified by participants were a perceived poor understanding in non-specialist health professionals about Charcot-Marie-Tooth disease and lack of attention to medication safety concerns in people with Charcot-Marie-Tooth disease; this resulted in dissatisfaction about the advice provided. Many individuals who faced uncertainty in obtaining and understanding medicines information turned to internet resources, peer groups, and use of complementary and alternative medicines to self-manage Charcot-Marie-Tooth exacerbations. Conclusion Participants reported drug-related adverse effects and a difficulty in obtaining safety information about medication. This study highlights the need for improved evidence about medication safety in people with Charcot-Marie-Tooth disease. Development of evidence-based resources, increased awareness amongst health professionals about Charcot-Marie-Tooth disease and a team-based care approach could facilitate shared decisions about medication use for people with Charcot-Marie-Tooth disease.
Charcot-Marie-Tooth 病是一种常见的遗传性周围神经病，患者可能对某些药物的不良反应敏感；然而，关于这一人群药物安全性的信息有限。
本研究旨在调查澳大利亚 Charcot-Marie-Tooth 病患者使用药物的经验，包括药物不良反应的感知影响。其次，它旨在确定 Charcot-Marie-Tooth 病患者是否感到有足够的支持来做出关于药物安全性的决策。
澳大利亚的 Charcot-Marie-Tooth 病患者的焦点小组和访谈（面对面或电话）。
2015 年 9 月至 2016 年 8 月期间，采用半结构化访谈进行混合方法定性研究。两名研究人员独立使用归纳编码对访谈记录进行主题分析，直到达到概念饱和。
Charcot-Marie-Tooth 病患者对药物安全性的看法，包括做出有关药物安全性决策的障碍。
24 名成年 Charcot-Marie-Tooth 病患者参与了研究。麻醉剂（18%）和普瑞巴林（15%）是报告对 Charcot-Marie-Tooth 症状有影响的最常见药物。参与者主要从全科医生或神经科医生那里获取药物信息。参与者确定的主要障碍是非专科卫生专业人员对 Charcot-Marie-Tooth 病的理解较差，以及对 Charcot-Marie-Tooth 病患者的药物安全性问题关注不足；这导致对提供的建议不满意。许多在获得和理解药物信息方面存在不确定性的人转向互联网资源、同行群体，并使用补充和替代药物来自我管理 Charcot-Marie-Tooth 病的恶化。
参与者报告了与药物相关的不良反应，并且难以获得有关药物安全性的信息。本研究强调了需要在 Charcot-Marie-Tooth 病患者中获得有关药物安全性的更好证据。开发基于证据的资源、提高卫生专业人员对 Charcot-Marie-Tooth 病的认识以及以团队为基础的护理方法可以促进 Charcot-Marie-Tooth 病患者对药物使用的共同决策。
