Work productivity, quality of life, and care needs: An unfolding epilepsy burden revealed in the Australian Epilepsy Project pilot study

Abstract Objective Epilepsy is a common and serious neurological disorder. This cross‐sectional analysis addresses the burden of epilepsy at different stages of the disease. Methods This pilot study is embedded within the Australian Epilepsy Project (AEP), aiming to provide epilepsy support through a national network of dedicated sites. For this analysis, adults aged 18–65 years with first unprovoked seizure (FUS), newly diagnosed epilepsy (NDE), or drug‐resistant epilepsy (DRE) were recruited between February–August 2022. Baseline clinicodemographic data were collected from the participants who completed questionnaires to assess their quality of life (QOLIE‐31, EQ‐5D‐5L), work productivity (Work Productivity and Activity Impairment [WPAI]), and care needs. Univariate analysis and multivariate regression was performed. Results 172 participants formed the study cohort (median age 34, interquartile range [IQR]: 26–45), comprising FUS (n = 44), NDE (n = 53), and DRE (n = 75). Mean QOLIE‐31 score was 56 (standard deviation [SD] ± 18) and median EQ‐5D‐5L score was 0.77 (IQR: 0.56–0.92). QOLIE‐31 but not EQ‐5D‐5L scores were significantly lower in the DRE group compared to FUS and NDE groups (p < 0.001). Overall, 64.5% of participants participated in paid work, with fewer DRE (52.0%) compared with FUS (76.7%) and NDE (72.5%) (p < 0.001). Compared to those not in paid employment, those in paid employment had significantly higher quality of life scores (p < 0.001). Almost 5.8% of participants required formal care (median 20 h/week, IQR: 12–55) and 17.7% required informal care (median 16 h/week, IQR: 7–101). Significance Epilepsy is associated with a large burden in terms of quality of life, productivity and care needs. Plain Language Summary This is a pilot study from the Australian Epilepsy Project (AEP). It reports health economic data for adults of working age who live with epilepsy. It found that people with focal drug‐resistant epilepsy had lower quality of life scores and were less likely to participate in paid employment compared to people with new diagnosis epilepsy. This study provides important local data regarding the burden of epilepsy and will help researchers in the future to measure the impact of the AEP on important personal and societal health economic outcomes

Women's views on autologous cell-based therapy for post-obstetric incontinence

Aim: Fecal and urinary incontinence are devastating consequences of obstetric-related perineal injury. The aim of the present study is to determine acceptability to parous women of autologous cell-based therapy for fecal and urinary incontinence that arises due to pelvic diaphragm tearing during vaginal childbirth. Materials & methods: A multiple choice questionnaire survey was offered to 76 parous women at the Maternity Unit, University College Hospital, London, UK. Seventy completed questionnaires – response rate: 92%. Results: In total, 84% of women indicated a willingness to accept autologous cell-based therapy for obstetric injury-induced incontinence rather than surgery. Conclusion: These observational data provide an indication of likely acceptance of autologous cell-based therapies for birth injury incontinence and will help with designing new therapeutic approaches.The project was supported by grants from the UK Medical Research Council (MR/L002752/1), The Sir Halley Stewart Trust, The Henry Smith Charity, and the UCL Grand Challenge Studentship Scheme. The research was undertaken at UCL/UCLH which receives funding from the Department of Health's NIHR as a Comprehensive Biomedical Research Centre.Published versio