Quality of life and its association with comorbidities and adverse events from antiepileptic medications: Online survey of patients with epilepsy in Australia

Abstract

This study aimed to explore the quality of life (QoL) of adult patients with epilepsy (PwE) in Australia and its relationship with comorbidities and adverse events (AEs) from antiepileptic drugs (AEDs). Methods: Cross-sectional surveys were completed by PwE, or carer proxies, recruited via the online pharmacy application MedAdvisor and Australian PwE Facebook groups from May to August 2018. 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 constructed to explore associations between AEs or comorbidities and QOLIE-10-P score, with possible confounders determined using stepwise selection. Results: Nine hundred and seventy-eight of 1267 responses were eligible (mean age of respondents: 44.5 years, 64% female, 52% employed). Recent AED use was reported by 97%; 47% were on AED monotherapy, 35% had ≤2 lifetime AEDs, and 55% were seizure-free for N 1 year. After stepwise selection, control variables included in both models were time since diagnosis, employment status, seizure frequency, number of currently prescribed AEDs, and number of general practitioner (GP) visits per year. In the model for comorbidities, "psychiatric disorders" was associated with the largest QOLIE-10-P score decrease (−23.14, p b 0.001). In the model for AEs, which additionally controlled for depression and anxiety disorder, self-reported "memory problems" was associated with the largest decrease in QOLIE-10-P score (−14.27, p b 0.001). Conclusions: In this survey of Australian PwE, many of whom had relatively well-controlled epilepsy, psychiatric and self-reported memory problems were common and associated with the greatest detrimental impact on QoL. Further research is needed to better understand the underlying causes of impaired QoL and thereby improve its management.

Psychobehavioural and Cognitive Adverse Events of Anti-Seizure Medications for the Treatment of Developmental and Epileptic Encephalopathies

“…Psychobehavioural adverse events encompass a range of behavioural adverse events (AEs) including irritability, aggression, tantrum/outbursts, hyperactivity and emotional lability/mood changes and a range of psychiatric AEs including depression, psychosis, anxiety and suicidal ideation. Adverse events, including PBAEs in epilepsy patients, are associated with decreased patient QoL [ 10 ] and increased healthcare resources and costs [ 14 ].…”

“…Sleep problems may also cause neuroinflammation and neurodegeneration, further intensifying seizures [8]. These comorbidities can have profound effects on the quality of life (QoL) of patients and their families [9][10][11][12][13], and therefore their importance has been growing in recent decades, with more recent clinical trials and observational studies including specific evaluations of these outcomes.…”

Determining the role and responsibilities of the community epilepsy nurse in the management of epilepsy

“…In Australia, an estimated 250,000 people live with epilepsy, with approximately 70% attaining good seizure control with antiseizure medication (ASM) (Deloitte Access Economics, 2020). Compounding the disabling impact of living with epilepsy are the side effects of ASMs, stigma, and economic impact, which contribute to further physical, behavioural, cognitive, and psychological challenges (Jacoby & Baker, 2008; Peterson et al, 2019; Welton et al, 2020). Hence, both controlled and uncontrolled epilepsy can affect people of all ages and their family members, with far‐reaching impacts on the family's psychosocial well‐being (Deloitte Access Economics, 2020).…”

Quality of life among caregivers of epileptic children with degree of controlling seizures in Aseer region

“…For example, intractable epilepsy in children and their caregivers brings greater morbidity than controlled epilepsy impacting the functioning domains of life rendering a poor quality of life. [ 2 3 4 ] Children with epilepsy and their parents share the same family environment and experience together the process of living with epilepsy with all its associated challenges and concerns. [ 5 ] Various aspects of family life can be altered and affected indirectly due to epilepsy as it has been associated with loss of control, independence, fear, confusion, discrimination, problems related to the side effects of antiepileptic drugs, depression, and stigmatization.…”