Diagnosis, medication, and surgical management for patients with trigeminal neuralgia: a qualitative study.
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 in 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 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.


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 enhancing the provision of current care.
Leeds Institute of Health Sciences, University of Leeds, 101 Clarendon Road, Leeds, LS2 9LJ, UK. m.j.allsop@leeds.ac.uk.
Matthew J
MJ
Allsop
Leeds Institute of Health Sciences, University of Leeds, 101 Clarendon Road, Leeds, LS2 9LJ, UK.
Maureen
M
Twiddy
Leeds Institute of Health Sciences, University of Leeds, 101 Clarendon Road, Leeds, LS2 9LJ, UK.
Hilary
H
Grant
Leeds Institute of Health Sciences, University of Leeds, 101 Clarendon Road, Leeds, LS2 9LJ, UK.
Carolyn
C
Czoski-Murray
Institute of Psychological Sciences, University of Leeds, Leeds, LS2 9JT, UK.
Mark
M
Mon-Williams
Institute of Psychological Sciences, University of Leeds, Leeds, LS2 9JT, UK.
Faisal
F
Mushtaq
Department of Neurosurgery, Leeds General Infirmary, Great George Street, Leeds, LS1 3EX, UK.
Nick
N
Phillips
Eastman Dental Hospital, UCLH NHS Foundation Trust, 256 Gray's Inn Road, London, WC1X 8LD, UK.
Joanna M
JM
Zakrzewska
School of Dentistry, University of Leeds, Worsley Building, Leeds, LS2 9JT, UK.
Sue
S
Pavitt
D000328:Adult; D000368:Aged; D000700:Analgesics / Q000009:adverse effects* / Q000627:therapeutic use; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D059408:Pain Management / Q000009:adverse effects / Q000379:methods* / Q000523:psychology; D017060:Patient Satisfaction; D011788:Quality of Life; D016634:Radiosurgery / Q000009:adverse effects*; D014277:Trigeminal Neuralgia / Q000175:diagnosis* / Q000188:drug therapy / Q000601:surgery
D000700:Analgesics
Management; Medication; Qualitative research; Surgery; Trigeminal neuralgia