Background 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. Methods Participants with TN (N = 16; 11 female), including those who have and have not undergone surgical intervention(s), took part one of four focus groups. We conducted a thematic analysis within an essentialist framework using transcripts. Results The impact of TN and treatment on the lives of participants emerged as three predominant themes: [1] experience of trigeminal neuralgia, [2] living in fear of TN pain, and [3] medication burden and looking for a cure. Each theme is discussed and illustrated with extracts from the transcripts. Conclusions 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 enhance the provision of current care.
CORE (COnnecting REpositories)
CORE (COnnecting REpositories)