Australian UCB publications in neurology helping to advance medical and scientific breakthroughs

Shortages of antiseizure medications in Australia and the association with patient switching, and adherence in a community setting
Welton J et al. Epilepsy Behav 2023;141:109145.
The study aimed to quantify shortages of oral anti-seizure medications (ASMs) in Australia, assess the number of patients impacted, and explore the association between shortages and brand or formulation switching, and changes in adherence. A retrospective cohort study was conducted using data from the Medicine Shortages Reports Database and the IQVIA-NostraData Dispensing Data. From 2019 to 2020, 97 sponsor-reported ASM shortages were identified, with 93% involving generic brands. Out of 1,247,787 patients prescribed ASMs, 19.5% were affected by these shortages. Although shortages were more frequent before the COVID-19 pandemic, more patients were impacted during the pandemic. The study estimated 330,872 patient-level shortage events, with 98.5% linked to generic ASM brands. Shortages occurred at a rate of 41.06 per 100 person-years for patients on generic brands, compared to 0.83 for those on originator brands. Among patients taking a formulation of levetiracetam during shortages, 67.6% switched to a different brand or formulation, versus 46.6% during non-shortage periods. The findings suggest that nearly 20% of patients on ASMs in Australia were affected by shortages, with a much higher rate for those on generic brands. The study emphasises the need for better supply chain management for generic ASMs to ensure consistent medication availability in Australia.
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Quality of life and its association with comorbidities and adverse events from antiepileptic medications: Online survey of patients with epilepsy in Australia
Welton J et al. Epilepsy Behav 2020;104(Pt A):106856.
This study aimed to assess quality of life (QoL) among adult patients with epilepsy (PwE) in Australia and its relationship with comorbidities and adverse events (AEs) from anti-epileptic drugs (AEDs). The research involved cross-sectional surveys conducted between May and August 2018, with participants recruited via the MedAdvisor online pharmacy application and Australian PwE Facebook groups. Data were collected on demographics, epilepsy severity and management, AEs, comorbidities, and QoL (using the Patient-Weighted Quality of Life in Epilepsy Inventory [QOLIE-10-P] total score). Two linear regression models were used to explore associations between AEs or comorbidities and QOLIE-10-P score. Control variables included time since diagnosis, employment status, seizure frequency, number of currently prescribed AEDs, and number of GP visits per year.
A total of 978 eligible responses were analysed, with respondents having a mean age of 44.5 years, 64% being female, and 52% employed. Most participants (97%) reported recent AED use, with 47% on monotherapy, 35% having less than 2 lifetime AEDs and 55% being seizure-free for over a year. This study found that “psychiatric disorders” was associated with the largest QOLIE-10-P score decrease (-23.14, p<0.001) and self-reported “memory problems” was associated with the largest decrease in QOLIE-10-P score (-14.27, p<0.001).
The findings highlight that even in well-controlled epilepsy, psychiatric and self-reported memory problems were common and were associated with the greatest detrimental impact on QoL. The study emphasises the need for further research to better understand the underlying causes of impaired QoL to help improve management.
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The use of internet and devices, and interest in digital and home services: A survey of Australian caregivers and people with generalised myasthenia gravis
UCB Australia and Myasthenia Alliance Australia, October 2023.
A recent survey of people with generalised myasthenia gravis (gMG) and their carers was conducted between 13 and 25 September 2023 in Australia to assess access to educational resources and awareness for medical support via digital channels. Respondents were recruited through Facebook posts and email distributed from Australian gMG patient organisations. A short series of questions were asked, describing how frequently they use the internet and self-assess their proficiency in accessing this kind of information.
A total of 293 responses were received, with 71.7% aged 60 or over, and majority (64.2%) located in major cities of Australia. Over 80% of patients surveyed reported using the internet every day (n=194/230), with over 75% reporting their skills at using the internet being at least 4-stars out of 5 (n=176/230; 5-stars = excellent), and over 60% rating their skills at using their smartphone at least 4-stars out of 5 (n=144/230; 5-stars = excellent). Other key findings showed that over half of respondents rated an online support program (e.g. nurse support and educational resources) as 4 thumbs up or higher for usefulness (130/230; 5 thumbs up = very useful). More than 80% of respondents were willing to complete a regular survey to measure their symptoms (n=193/230) and over 85% were willing to share information about treatment and symptoms to further research (n=202/230).
Key results from this study will help inform future educational initiatives and provide tailored support related to medications used to treat MG.