Ying Xu1, Dennis R Neuen2, Nick Glozier3, Armin Nikpour4, Ernest Somerville5, Andrew Bleasel6, Carol Ireland7, Craig S Anderson8, Maree L Hackett9. 1. The George Institute for Global Health, Faculty of Medicine, University of New South Wales, 83-117 Missenden Road, Camperdown, NSW 2050, Australia; School of Public Health, Faculty of Medicine and Health, Edward Ford Building (A27) Fisher Road, University of Sydney, NSW 2006, Australia. Electronic address: yxu1@georgeinstitute.org.au. 2. The George Institute for Global Health, Faculty of Medicine, University of New South Wales, 83-117 Missenden Road, Camperdown, NSW 2050, Australia; Wagga Wagga Rural Clinical School, School of Medicine Sydney, University of Notre Dame Australia, 40 Hardy Avenue, Wagga Wagga, NSW 2650, Australia. Electronic address: dennis.neuen@outlook.com. 3. Brain and Mind Centre, University of Sydney, 94 Mallett St, Camperdown, NSW 2050, Australia. Electronic address: nick.glozier@sydney.edu.au. 4. School of Public Health, Faculty of Medicine and Health, Edward Ford Building (A27) Fisher Road, University of Sydney, NSW 2006, Australia; Neurology Department, Royal Prince Alfred Hospital, Sydney Local Area Health District, 50 Missenden Rd, Camperdown, NSW 2050, Australia. Electronic address: armin@sydneyneurology.com.au. 5. Neurology Department, Prince of Wales Clinical School, University of New South Wales, Barker St, Randwick, NSW 2031, Australia. Electronic address: e.somerville@unsw.edu.au. 6. Neurology Department, Westmead Hospital, Cnr Hawkesbury Road and Darcy Road, Westmead, NSW 2145, Australia. Electronic address: andrew.bleasel@sydney.edu.au. 7. Epilepsy Action Australia, PO Box 879, Epping, NSW 1710, Australia. Electronic address: CIreland@Epilepsy.org.au. 8. The George Institute for Global Health, Faculty of Medicine, University of New South Wales, 83-117 Missenden Road, Camperdown, NSW 2050, Australia; School of Public Health, Faculty of Medicine and Health, Edward Ford Building (A27) Fisher Road, University of Sydney, NSW 2006, Australia; Neurology Department, Royal Prince Alfred Hospital, Sydney Local Area Health District, 50 Missenden Rd, Camperdown, NSW 2050, Australia; The George Institute China at Peking University Health Science Center, Level 18, Tower B, Horizon Tower, No. 6 Zhichun Rd, Haidian District, Beijing 100088, PR China. Electronic address: canderson@georgeinstitute.org.cn. 9. The George Institute for Global Health, Faculty of Medicine, University of New South Wales, 83-117 Missenden Road, Camperdown, NSW 2050, Australia; School of Public Health, Faculty of Medicine and Health, Edward Ford Building (A27) Fisher Road, University of Sydney, NSW 2006, Australia; Faculty of Health and Wellbeing, University of Central Lancashire, Preston, PR1 2HE, UK. Electronic address: mhackett@georgeinstitute.org.au.
Abstract
OBJECTIVE: To determine the patterns and predictors of disability over the first 12 months after a diagnosis of epilepsy. PATIENTS AND METHODS: The Sydney Epilepsy Incidence Study to Measure Illness Consequences (SEISMIC) was a prospective, multicenter, community-based study of people with newly diagnosed epilepsy in Sydney, Australia. Disability was assessed using the World Health Organization's, Disability Assessment Schedule (WHODAS) 2.0 12-item version, at baseline (i.e. within 28 days of diagnosis) and 12 months post-diagnosis. Demographic, socioeconomic, clinical and epilepsy-related data, obtained through structured interviews, were entered into multivariable linear regression and shift analysis to determine predictors of greater disability. RESULTS: Of 259 adults (≥18 years), 190 (73%) had complete WHODAS at baseline (mean ± SD scores 4 ± 6) and follow-up (4 ± 8). After adjustment for age, sex and co-morbidity, greater overall disability at 12 months was associated with lower education (P = 0.05), economic hardship (P = 0.004), multiple antiepileptic medications (P = 0.02) and greater disability (P < 0.001) at the time of diagnosis; these variables explained 38.3% of the variance. Among the 12 WHODAS items, "being emotionally affected by health problems" was the most frequent disability problem identified at both time points (all P < 0.0001). The proportion of participants without problems in that domain improved over 12 months (from 24% to 50%, P < 0.0001), whereas the other 11 items remained relatively stable. Independent baseline predictors of a worse emotional outcome at 12 months were severe/extreme emotional distress (odds ratio [OR] 4.52, 95% confidence intervals [CI] 1.67-12.24), economic hardship (OR 2.30, 95% CI 1.24-4.25) and perceived stigma (OR 2.02, 95% CI 1.03-3.93). CONCLUSION: Most people report problems with emotional health after a diagnosis of epilepsy but many recover over the next 12 months. Services addressing the social and psychological impact of diagnosis may be needed to improve outcome.
OBJECTIVE: To determine the patterns and predictors of disability over the first 12 months after a diagnosis of epilepsy. PATIENTS AND METHODS: The Sydney Epilepsy Incidence Study to Measure Illness Consequences (SEISMIC) was a prospective, multicenter, community-based study of people with newly diagnosed epilepsy in Sydney, Australia. Disability was assessed using the World Health Organization's, Disability Assessment Schedule (WHODAS) 2.0 12-item version, at baseline (i.e. within 28 days of diagnosis) and 12 months post-diagnosis. Demographic, socioeconomic, clinical and epilepsy-related data, obtained through structured interviews, were entered into multivariable linear regression and shift analysis to determine predictors of greater disability. RESULTS: Of 259 adults (≥18 years), 190 (73%) had complete WHODAS at baseline (mean ± SD scores 4 ± 6) and follow-up (4 ± 8). After adjustment for age, sex and co-morbidity, greater overall disability at 12 months was associated with lower education (P = 0.05), economic hardship (P = 0.004), multiple antiepileptic medications (P = 0.02) and greater disability (P < 0.001) at the time of diagnosis; these variables explained 38.3% of the variance. Among the 12 WHODAS items, "being emotionally affected by health problems" was the most frequent disability problem identified at both time points (all P < 0.0001). The proportion of participants without problems in that domain improved over 12 months (from 24% to 50%, P < 0.0001), whereas the other 11 items remained relatively stable. Independent baseline predictors of a worse emotional outcome at 12 months were severe/extreme emotional distress (odds ratio [OR] 4.52, 95% confidence intervals [CI] 1.67-12.24), economic hardship (OR 2.30, 95% CI 1.24-4.25) and perceived stigma (OR 2.02, 95% CI 1.03-3.93). CONCLUSION: Most people report problems with emotional health after a diagnosis of epilepsy but many recover over the next 12 months. Services addressing the social and psychological impact of diagnosis may be needed to improve outcome.