Background and aims: Patients often first present with symptoms of trigeminal neuralgia (TN) to primary care. However, there has been little research to determine whether the diagnosis and management of this condition is carried out according to current guidelines. Furthermore, there is little up-to-date information regarding the prevalence of TN in the UK. The aim is to estimate the prevalence of TN and to audit the diagnosis and management process of TN in primary care.
Methods: Between 2019 and 2020 a search was made at five UK GP practices with a total patient population of 55,842 using EMIS and SystmOne patient record systems to review patient consultations to identify patients coded with TN or facial pain (FP). These records were reviewed to ascertain the basis for diagnosis, management in primary care and referral to secondary care.
Results: 157 patients were identified; 54 coded with FP and 103 with TN. These results indicate a prevalence of 22.3 in 10,000. There was no difference in documented symptoms between the two groups. Seven patients had all ICDH3 criteria recorded, with two meeting the requirements for TN diagnosis. 58.8% of patients with TN were started on carbamazepine, the current gold standard treatment, compared with 16.7% in the FP group. 38.2% of TN patients were referred to a range of different specialities.
Conclusion: The prevalence of TN may be higher than previously thought. Key diagnostic criteria are often omitted, leading to potential misdiagnosis or delays in diagnosis. Relatively few referrals are made, though all patients should be considered for imaging.
Background: Although multiple measures of the causes and consequences of chronic non-cancer pain (CNCP) are available and can inform pain management, no quantitative summary of these measures can describe the meaning of pain for a patient. The lived experience of pain tends to be a blind spot in pain management. This study aimed to: (1) integrate qualitative research investigating the lived experience of a range of CNCP conditions; (2) establish common qualitative themes in CNCP experience; and (3) evaluate the relevance of our results through a survey questionnaire based on these themes, administered across the United Kingdom.
Methods: Four bibliographic databases were searched from inception to February 2021 to identify Qualitative Evidence Syntheses (QES) that investigated the lived experience of CNCP and its impact on everyday life and activities. Themes and trends were derived by thematic qualitative analysis in collaboration with two patient and public involvement representatives who co-created twenty survey statements. The survey was developed for testing the QES themes for validity in people living with pain.
Results: The research team identified and screened 1323 titles, and considered 86 abstracts, including 20 in the final review. Eight themes were developed from the study findings: (1) my pain gives rise to negative emotions; (2) changes to my life and to myself; (3) adapting to my new normal; (4) effects of my pain management strategies; (5) hiding and showing my pain; (6) medically explaining my pain; (7) relationships to those around me; and (8) working while in pain. Each theme gave rise to one or two survey questions. The survey was shared with members of the UK pain community over a 2-week period in November 2021, and was completed by 1219 people, largely confirming the above themes.
Conclusion/implications: This study provides a validated summary of the lived experience of CNCP. It highlights the adverse nature, complications, and consequences of living with CNCP in the UK and the multiple shortcomings in the ways in which pain is addressed by others in the UK. Our findings are consistent with published meta-ethnographies on chronic non-malignant musculoskeletal pain and chronic low-back pain. Despite the underrepresentation of qualitative research in the pain literature compared to quantitative approaches, for understanding the complexity of the lived experience of pain, qualitative research is an essential tool.