Persons with Epilepsy: Between Social Inclusion and Marginalisation

Mlinar, Simona; Petek, Davorina; Cotič, Živa; Čeplak, Metka Mencin; Zaletel, Marjan

doi:10.1155/2016/2018509

Cited by 26 publications

(15 citation statements)

References 30 publications

(33 reference statements)

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“…10 Isolated patients have been known to experience more seizures than those with friends, colleagues or family. 27 This is in agreement with the present study where we report that having friends was significantly associated with controlled seizures than not having any. This could be because peer support could help the patients feel better about themselves and this is important in the treatment process.…”

Section: Discussionsupporting

confidence: 94%

Correlates of Seizure Control Among Patients with Epilepsy at Two Referral Hospitals in Zambia

Mwansa

Daka

Mulenga

et al. 2020

Int. J. Transl Med Res Public Health

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Background: Epilepsy is a neurological condition that has proven to be a major public health challenge worldwide, including Zambia. Despite the availability of many treatment alternatives, people with epilepsy still experience seizures. There is paucity of information on the control of seizures and associated factors in Zambia. Methods: A cross sectional study was conducted among epileptic patients at Kitwe and Ndola Teaching Hospitals, two referral hospitals in Northern Zambia, from September 2 to September 23, 2019. We performed a multivariate logistic regression analysis to identify independent predictors of seizure control. Adjusted odds ratios and their 95% confidence intervals are reported. Results: A total of 220 epileptic patients were enrolled in the study. Of these, 23.6% had controlled seizures while 76.4% had uncontrolled seizures. Occupation (p value=0.018), level of education (p value<0.001), clinic attendance (p value<0.001), drug adherence (p value<0.001), belief about drugs (p value=0.006) and having friends (p value=0.025) were significantly associated with seizure control. A higher level of education (AOR:0.243, CI:0.080-0.738), regular clinic attendance (AOR:8.578, CI:3.327-22.112) and age at first seizure of 7-12 years (AOR: 1.035, CI:0.240-4.454) were predictors of controlled seizures. Conclusions and Implications for Translation: Our study showed that there was a low prevalence of controlled seizures among the study population. Key words: • Seizure • Control • Epilepsy • Zambia • Healthcare Copyright © 2020 Mwansa et al. Published by Global Health and Education Projects, Inc. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY 4.0) which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in this journal, is properly cited.

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Section: Discussionsupporting

confidence: 94%

Correlates of Seizure Control Among Patients with Epilepsy at Two Referral Hospitals in Zambia

Mwansa

Daka

Mulenga

et al. 2020

Int. J. Transl Med Res Public Health

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“…These findings are consistent with patient-reported fear related to reactions of friends, family, and others, and fear of future episodes. 10 …”

Section: Discussionmentioning

confidence: 99%

Epilepsy Treatment Complacency in Patients, Caregivers, and Health Care Professionals

et al. 2021

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Objective:To explore the perspectives of adult patients with epilepsy, caregivers, and healthcare professionals (HCPs) on treatment for seizures and treatment decisions, we developed and administered the STEP Survey (Seize the Truth of Epilepsy Perceptions).Methods:Participants were recruited from online panel M3 and by Rare Patient Voice and completed the self-administered online STEP Survey. Analysis of variance and chi-square tests were used for group comparisons.Results:The STEP Survey was completed by 400 adult patients, 201 caregivers, and 258 HCPs. Patients estimated reporting 45% of their seizures to their HCP, whereas caregivers estimated 83% and HCPs estimated 73% were reported. The most common reason for not reporting seizures was the seizures were “not serious enough to mention” (patients 57%; caregivers 66%). A minority of patients (25%) and caregivers (30%) were very or extremely likely to ask their HCP about changing antiseizure medication (ASM) in the next 12 months. The HCP was most frequently selected by patients, caregivers, and HCPs as the person who initiates discussion of changing ASMs (patients 73%/caregivers 66%/HCPs 75%) and increasing ASM dosage (patients 77%/caregivers 68%/HCPs 81%). A majority of patients (65%) and caregivers (68%) somewhat or strongly agreed they do not change ASMs due to fear of getting worse. HCPs perceive this fear less often, stating 50% of their patients feel afraid when a second ASM was added.Conclusions:Improved reporting of all seizures, discussion of treatment changes, and the impact of fear on treatment decisions provide opportunities to reduce complacency and optimize patient outcomes.

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“…Designed to address depression, reduced access to mental healthcare, and concerns about psychotropic medications among people with chronic illnesses such as epilepsy, Project UPLIFT (Using Practice and Learning to Increase Favorable Thoughts) provides group distance delivery of mental health self-management skills training. Group delivery was deemed an important component of the program because isolation can be a problem for people with chronic diseases like epilepsy, and social support is often lacking [33]. Thompson and colleagues [34] developed Project UPLIFT for use as a home-based depression treatment for PWE, and later extended it for use in prevention of depression among PWE [35].…”

Section: Project Upliftmentioning

confidence: 99%

Depression self-management in people with epilepsy: Adapting project UPLIFT for underserved populations

Quarells

Spruill

Escoffery

et al. 2019

Epilepsy & Behavior

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Data from the 2015 National Health Interview Survey found that the prevalence of active epilepsy has increased to three million adults. Although findings have been mixed, some research indicates that Blacks and Hispanics share a higher burden of epilepsy prevalence compared with non-Hispanic whites. Moreover, depression is a common comorbid condition among people with epilepsy (PWE), affecting up to 55% of the epilepsy population. Widespread use and increased public health impact of evidence-based self-management interventions is critical to reducing disease burden and may require adapting original interventions into more culturally relevant versions for racial and ethnic minority groups. Project UPLIFT provides access to mental health self-management skills training that is distance-delivered, does not interfere with medication management, and has been shown to be effective in reducing depressive symptoms. This paper presents the process of exploring the adaptation of Project UPLIFT for Black and Hispanic PWE and herein suggests that evidence-based interventions can be successfully adapted for new populations or cultural settings through a careful and systematic process. Additional key lessons learned include the importance of community engagement and that language matters. Ultimately, if the adapted Project UPLIFT intervention produces positive outcomes for diverse populations of PWE, it will extend the strategies available to reduce the burden of depression. Implementing evidence-based interventions such as Project UPLIFT is critical to reducing disease burden; however, their delivery may need to be tailored to the needs and culture of the populations of interest.

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Persons with Epilepsy: Between Social Inclusion and Marginalisation

Cited by 26 publications

References 30 publications

Correlates of Seizure Control Among Patients with Epilepsy at Two Referral Hospitals in Zambia

Correlates of Seizure Control Among Patients with Epilepsy at Two Referral Hospitals in Zambia

Epilepsy Treatment Complacency in Patients, Caregivers, and Health Care Professionals

Depression self-management in people with epilepsy: Adapting project UPLIFT for underserved populations

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