Werner Cameron, Harden Jeni, Lawton Julia
Department of Psychology, IU International University of Applied Sciences, Erfurt, Germany.
Usher Institute, Medical School, University of Edinburgh, Edinburgh, UK.
BMC Prim Care. 2025 Mar 6;26(1):65. doi: 10.1186/s12875-025-02763-8.
Trigeminal Neuralgia (TN) is a rare disorder which causes episodes of intense facial pain and has been described as the 'suicide disease'. Hence, prompt diagnosis and timely initiation of treatment is vital. However, delays to diagnosis and high rates of misdiagnosis are common, particularly within primary care. To date, most research has focused upon treatment options rather than improving diagnostic experiences. This study sought to explore patients' experiences of the events leading up to their TN diagnosis and their views about the care and support they received when they were diagnosed to provide recommendations for improving the TN diagnostic pathway.
This was a qualitative, exploratory study using in-depth interviews. Interviews were conducted with (n = 25) UK-based people with TN recruited via online forums. Data were analysed thematically.
Following the onset of their TN pain, most participants described an arduous and uncertain journey to diagnosis, with many encountering significant delays, misdiagnoses and receiving inappropriate referrals and treatment. As a consequence, participants reported experiencing profound distress, anxiety, depression and, in extreme cases, suicidal ideation; some also described drug and alcohol misuse during this time. Most participants conveyed relief upon finally receiving a diagnosis. However, this was often by eclipsed by what they saw as poor and insensitive communication and inadequate information provisioning.
The present study highlights the importance of developing bespoke training for primary care and other professionals to facilitate timely recognition of TN symptomatology and ensure that they deliver a TN diagnosis in clear, sensitive and empathetic ways.
三叉神经痛（TN）是一种罕见疾病，会引发剧烈的面部疼痛发作，被称为“自杀性疾病”。因此，及时诊断并及时开始治疗至关重要。然而，诊断延迟和误诊率高的情况很常见，尤其是在初级医疗保健领域。迄今为止，大多数研究都集中在治疗方案上，而非改善诊断体验。本研究旨在探讨患者在TN诊断之前的经历，以及他们对确诊时所接受的护理和支持的看法，以便为改善TN诊断途径提供建议。
这是一项采用深入访谈的定性探索性研究。对通过在线论坛招募的（n = 25）名英国TN患者进行了访谈。对数据进行了主题分析。
在TN疼痛发作后，大多数参与者描述了一段艰难且不确定的诊断历程，许多人遭遇了严重的延迟、误诊，以及接受了不恰当的转诊和治疗。结果，参与者报告经历了极度的痛苦、焦虑、抑郁，在极端情况下还有自杀念头；一些人还描述了在此期间滥用药物和酒精的情况。大多数参与者在最终确诊时表示宽慰。然而，这往往被他们认为是糟糕且冷漠的沟通以及信息提供不足所掩盖。
本研究强调了为初级医疗保健人员和其他专业人员开展定制培训的重要性，以促进对TN症状的及时识别，并确保他们以清晰、敏感且富有同理心的方式做出TN诊断。
