Allsop Matthew J, Twiddy Maureen, Grant Hilary, Czoski-Murray Carolyn, Mon-Williams Mark, Mushtaq Faisal, Phillips Nick, Zakrzewska Joanna M, Pavitt Sue
Leeds Institute of Health Sciences, University of Leeds, 101 Clarendon Road, Leeds, LS2 9LJ, UK.
Institute of Psychological Sciences, University of Leeds, Leeds, LS2 9JT, UK.
Acta Neurochir (Wien). 2015 Nov;157(11):1925-33. doi: 10.1007/s00701-015-2515-4. Epub 2015 Sep 2.
Trigeminal neuralgia (TN) is a serious health problem, causing brief, recurrent episodes of stabbing or burning facial pain, which patients describe as feeling like an electric shock. The consequences of living with the condition are severe. There is currently no cure for TN and management of the condition can be complex, often delayed by misdiagnosis. Patients' qualitative experiential accounts of TN have not been reported in the literature. Capturing subjective experiences can be used to inform the impact of the condition on quality of life and may contribute to a better understanding of current clinical practice with the aim of improving patient care.
Participants with TN (n = 16; 11 female), including those who have and have not undergone surgical intervention(s), took part in one of four focus groups. We conducted a thematic analysis within an essentialist framework using transcripts.
The impact of TN and treatment on the lives of participants emerged as four predominant themes: (1) diagnosis and support with TN, (2) living in fear of TN pain, (3) isolation and social withdrawal, and (4) medication burden and looking for a cure. Each theme is discussed and illustrated with extracts from the transcripts.
Key issues to address in the management of patients with TN include continued delays in diagnosis, persistent side effects from medication, and a lack of psychological support. Developing strategies to enhance the management of patients with TN, informed by a biopsychosocial approach and multidisciplinary team working, is essential to enhancing the provision of current care.
三叉神经痛（TN）是一个严重的健康问题，会引发短暂的、反复发作的刺痛或灼痛，患者形容这种疼痛如同触电一般。患有这种疾病的后果很严重。目前TN无法治愈，其治疗可能很复杂，常常因误诊而延误。文献中尚未报道过患者对TN的定性体验描述。获取主观体验可用于了解该疾病对生活质量的影响，并可能有助于更好地理解当前的临床实践，以改善患者护理。
患有TN的参与者（n = 16；11名女性），包括接受过和未接受过手术干预的患者，参加了四个焦点小组中的一个。我们使用文字记录在本质主义框架内进行了主题分析。
TN及其治疗对参与者生活的影响呈现为四个主要主题：（1）TN的诊断与支持，（2）生活在对TN疼痛的恐惧中，（3）孤立与社交退缩，以及（4）药物负担与寻求治愈方法。每个主题都结合文字记录中的摘录进行了讨论和说明。
TN患者管理中需要解决的关键问题包括诊断持续延误、药物持续的副作用以及缺乏心理支持。制定以生物心理社会方法和多学科团队合作为依据的策略来加强TN患者的管理，对于改善当前的护理服务至关重要。
