“They Could Have Cut My Head Off and I Wouldn’t Have Cared”—A Qualitative Study of Patient Experiences and the Impact of Trigeminal Neuralgia

Aims: To understand, from the patient perspective, the meaning of living with trigeminal neuralgia (TN) and what the patient-desired outcomes of treatment are. Methods: A qualitative study involving focus group work with 14 participants with a diagnosis of TN was conducted. The discussions were recorded and transcribed verbatim and analyzed using framework analysis. Results: Four themes and 14 subthemes were identified. Theme 1 reflects the uncertainty about TN etiology and prognosis; theme 2 includes descriptions of the mental, social, and physical impacts of TN that contrast with coping mechanisms developed over time; theme 3 reflects participants' views of what a successful treatment means and the specific outcomes they expect following treatment, as well as patient willingness to self-manage their conditions while supported; and theme 4 highlights the importance of appropriate and timely access to health care and the importance of peer support. Conclusion: This study confirms the need to move beyond the biologic models of disease to patient-centered care and research approaches.

patient-centered care; patient-reported outcomes; qualitative research; trigeminal neuralgia

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