"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.

Treatment Outcomes in Trigeminal Neuralgia-A Systematic Review of Domains, Dimensions and Measures.

BACKGROUND: Trigeminal neuralgia (TN) is a painful disorder characterized by sudden electric shock-like pain. It is a rare condition for which multiple treatments are available, including medical and surgical. The best treatment option is yet to be defined, and this is related to the lack of definition in the treatment outcomes and outcome measures. The aim of this systematic review was to summarize all the outcomes and outcomes measures that have been published to date and highlight variability in their use. METHODS: We have conducted a literature search using a wide range of databases (1946-2019 for medical and 2008-2019 for surgical treatment), for all intervention studies in TN. Four hundred and sixty-seven studies were selected for data extraction on TN classification, data collection method, intervention, and treatment outcomes mapped to the Initiative on Methods, Measurement, and Pain Assessment in Clinical Trials (IMMPACT guidelines). RESULTS: Most studies collected data on pain (n = 459) and side effects (n = 386) domains; however, very few collected data on the impact of treatment on physical (n = 46) and emotional functioning (n = 17) and on patient satisfaction (n = 35). There was high variability on outcome measures used for pain relief (n = 10), pain intensity (n = 9), and frequency of pain episodes (n = 3). CONCLUSIONS: A clear definition of what are the important outcomes for patients with TN is essential. The choice of standardized outcome measures allowing for consistent reporting in TN treatment will allow for comparison of studies and facilitate treatment choice for patients and clinicians thus, improving health outcomes and reducing health care cost.