OWN - Quintessenz Verlags-GmbH CI - Copyright Quintessenz Verlags-GmbH OCI - Copyright Quintessenz Verlags-GmbH TA - J Orofac Pain JT - Journal of Oral & Facial Pain and Headache IS - 2333-0376 (Electronic) IS - 2333-0384 (Print) IP - 3 VI - PST - ppublish DP - 2022 PG - 189-205 LA - en TI - "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 LID - 10.11607/ofph.3110 [doi] FAU - Nova, Carolina Venda AU - Nova C FAU - Zakrzewska, Joanna M AU - Zakrzewska J FAU - Ni Riordain, Richeal AU - Ni Riordain R FAU - Baker, Sarah R AU - Baker S CN - OT - patient-centered care OT - patient-reported outcomes OT - qualitative research OT - trigeminal neuralgia AB - 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. AID - 3684075