Understanding the Impact of Brain Disorders: Towards a ‘Horizontal Epidemiology’ of Psychosocial Difficulties and Their Determinants

Cieza, Alarcos; Anczewska, Marta; Ayuso-Mateos, José Luís; Baker, Mary; Bickenbach, Jerome; Chatterji, Somnath; Hartley, Sally; Leonardi, Matilde; Pitkänen, Tuuli

doi:10.1371/journal.pone.0136271

Cited by 46 publications

(35 citation statements)

References 43 publications

(46 reference statements)

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“…This is consistent with an earlier UK general practice study, where 47% of 192 participants reported some degree of negative emotional impact within 3 years of diagnosis [37]. Another European study indicated that 74% of those with epilepsy had some emotional difficulties reported on the WHODAS [29]. Evidence based upon eight randomized control trials showed that psychological treatments (i.e.…”

Section: Discussionsupporting

confidence: 87%

“…The SEISMIC WHODAS-12 average total score at diagnosis was comparable with normative Australia data [31], showing that people with a physical disorder have scores (mean ± SD 4.3 ± 6.1) lower than those with mental health disorders, but higher than those free of any health problems (although, epilepsy and other neurological conditions were not included as physical disorders in that study). The SEISMIC data are also comparable to results of a study of people with a variety of brain disorders: similar proportions of people with epilepsy had problems with daily work, concentration, learning, activities, mobility and household tasks [29]. However, the frequency of our participants reporting disability was lower than in people with spinal cord injury [32], multiple sclerosis [29], Parkinson`s disease [29], mental illness [29,33], and substance abuse [33].…”

Section: Discussionsupporting

confidence: 80%

“…The SEISMIC data are also comparable to results of a study of people with a variety of brain disorders: similar proportions of people with epilepsy had problems with daily work, concentration, learning, activities, mobility and household tasks [29]. However, the frequency of our participants reporting disability was lower than in people with spinal cord injury [32], multiple sclerosis [29], Parkinson`s disease [29], mental illness [29,33], and substance abuse [33]. Lower education level has been associated with a "moderate or higher level of disability" (i.e.…”

Section: Discussionsupporting

confidence: 66%

“…The WHODAS has a thirteenth question to indicate "How much do these difficulties [any endorsed] interfere with your life?". The WHODAS 12-item assessment tool has been shown to be valid and reliable in rating disability [23], and has been used among people with epilepsy [24][25][26][27][28][29][30].…”

Section: Methodsmentioning

confidence: 99%

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Disability patterns over the first year after a diagnosis of epilepsy

Neuen

Glozier

et al. 2019

Clinical Neurology and Neurosurgery

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2019) Disability patterns over the first year after a diagnosis of epilespy. Clinical Neurology and Neurosurgery, 179,[60][61][62][63][64][65] 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.

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Section: Discussionsupporting

confidence: 87%

Section: Discussionsupporting

confidence: 80%

Section: Discussionsupporting

confidence: 66%

Section: Methodsmentioning

confidence: 99%

See 2 more Smart Citations

Disability patterns over the first year after a diagnosis of epilepsy

Neuen

Glozier

et al. 2019

Clinical Neurology and Neurosurgery

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show abstract

“…Dementia impairs quality of life and life expectancy in advanced stages, causing grave emotional and economic impact on patients and their caregivers . There is no known cure for dementia .…”

Section: Introductionmentioning

confidence: 99%