"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.