Quality of Life and Its Determinants in Adult Drug Refractory Epilepsy Patients Who Were Not Candidates for Epilepsy Surgery: A Correlational Study

Puri, Inder; Dash, Deepa; Padma, M. V.; Tripathi, Manjari

doi:10.14581/jer.18013

Cited by 10 publications

(7 citation statements)

References 15 publications

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“…Since that review, several single‐center studies have assessed the relationship of QoL with DRE; however, these studies were conducted outside of the United States and did not take a comprehensive multivariate approach including HCRU 6,8,19,20 . In addition, one of the studies focused only on patients with focal epilepsy.…”

Section: Significancementioning

confidence: 99%

“…Advancements in antiepileptic drug (AED) treatments have resulted in the potential for the complete remission of seizures in patients with epilepsy 1 . However, approximately 30%–40% of adult patients have drug‐resistant epilepsy (DRE; defined as failure to achieve sustained seizure remission despite adequate trials of two appropriately chosen and used AEDs), and continue to experience seizures despite multiple treatment attempts, 2–5 resulting in a significant economic burden and decrease in quality of life (QoL) for patients and their caregivers 5–8 …”

Section: Introductionmentioning

confidence: 99%

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Quantifying the burden of generalized tonic‐clonic seizures in patients with drug‐resistant epilepsy

et al. 2020

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Objective: Compared to other seizure types, generalized tonic-clonic (GTC) seizures may be disproportionately related to increased morbidity, and reducing seizure frequency could translate into improvements across measures of morbidity in medically treated patients with drug-resistant epilepsy (DRE). The primary objective of this analysis was to quantify the burden of patients with DRE who experience GTC seizures (GTC+) compared to patients with DRE who do not experience GTC seizures (GTC−). Methods: Adult patients from the Cleveland Clinic Epilepsy Center-Neurological Institute from 2012-2016 with DRE with epilepsy for at least 1 year were eligible for inclusion and were divided into GTC ± groups based on whether the patient had experienced a GTC seizure in the year preceding the first visit. Epilepsy duration, comorbidities, antiepileptic drug use, patient-reported outcomes (PROs) and seizure type, frequency, and etiology were captured. Generalized linear models, negative binomial regression, logistic regression, and linear regression were used as appropriate for multivariate analyses. Results: A total of 379 patients met inclusion criteria and had data at 1-year followup after their baseline visit (192 GTC+ and 187 GTC−). Although DRE patients experiencing GTC seizures had fewer seizures per day over the preceding 6 months than those not experiencing GTC seizures, seizure severity and levels of depression and anxiety were greater. GTC+ patients who reported five or more seizures in the preceding 4 weeks had 82% lower odds (1−0.18 = 0.82) of working than patients with no seizures. Significance: Patients with DRE experience a significant burden and decreased quality of life. Multivariate analysis is necessary to understand the complex relationship between seizure type, frequency, and impact on health-related quality of life (HRQoL) and changes over time. Effective treatments to reduce the burden for DRE patients who experience GTC seizures continue to be needed.

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Section: Significancementioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Quantifying the burden of generalized tonic‐clonic seizures in patients with drug‐resistant epilepsy

et al. 2020

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“…This is in line with a previous study that found patients with drug refractory epilepsy were worried about the long-term side ef-fects of the drugs on their body. 12 Additionally, they were concerned about changing type/strength of medication, medication ineffectiveness, and feeling bored with taking medication every day (item scores of 3.5). Therefore, healthcare providers should take more care of these concerns of patients to enhance their medication therapy-related quality of life.…”

Section: Medication-related Quality Of Lifementioning

confidence: 99%

“…Little was also known about associations between medication-related quality of life and patient characteristics in epilepsy patients since most previous studies assessed the relationships with health-related quality of life, non-specific medication measures. [4][5][6][12][13][14][15] Hence, the second objective was to evaluate such associations. This information will be helpful for healthcare providers to manage medication therapy for epilepsy patients.…”

Section: Introductionmentioning

confidence: 99%

Medication-Related Quality of Life in Thai Epilepsy Patients

Sakthong¹,

Suriyapakorn²

2020

J Epilepsy Res

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Background and Purpose: This study aimed to assess medication-related quality of life in Thai patients with epilepsy. The second objective was to evaluate the associations between the medication therapy-related quality of life and patient characteristics. Methods: This was a cross-sectional study. A convenience sample of 173 outpatients with epilepsy was recruited from a university hospital in Bangkok, Thailand. Inclusion criteria were aged 18 or over who were continuously taking an epileptic drug for at least 3 months, understanding Thai language, and willing to participate in the study. The Patient-Reported Outcomes Measure of Pharmaceutical Therapy for Quality of Life (PROMPT-QoL) was utilized to measure the medication therapy-related quality of life. Pearson's correlation coefficients and stepwise multiple linear regressions were employed to assess the relationships between eight PROMPT-QoL domain scores and patient demographic and clinical characteristics. Results: Mean age was 36.4±9.5 years and approximately 57% were female. Among eight domains of the PROMPT-QoL, the therapeutic relationships with health care providers and psychological impacts of medication use domains yielded the highest (77.9) and lowest (61.9) mean scores, respectively. Seven out of eight PROMPT-QoL domain scores were considered as moderate-to-good. Age, gender, duration of epilepsy, seizure frequency, and treatment preference were significantly associated with PROMPT-QoL domain scores in multivariate linear regression analyses. Conclusions: This study showed that Thai patients with epilepsy had moderate-to-good medication therapy-related quality of life. Healthcare providers should pay more attention to patients' psychological impacts of antiepileptic drugs and those with characteristics related to lower medication therapy-related quality of life. (2019;9:139-146)

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“…Drug-resistant epilepsy (DRE) poses an increased risk of hospitalizations, medication non-adherence, and poor quality of life (QoL) [1][2][3][4][5][6][7][8][9][10][11]. A multitude of factors could account for why patients have unaddressed DRE, such as gaps in disease education, socioeconomic and societal limitations to healthcare access, lack of care-giver involvement, and healthcare provider (HCP) reluctance to move beyond pharmacological therapies, among others [12,13].…”

Section: Introductionmentioning

confidence: 99%

A journey into the unknown: An ethnographic examination of drug-resistant epilepsy treatment and management in the United States

Watson

Afra

Bartolini

et al. 2021

Epilepsy & Behavior

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Patients often recognize unmet needs that can improve patient-provider experiences in disease treatment management. These needs are rarely captured and may be hard to quantify in difficult-to-treat disease states such as drug-resistant epilepsy (DRE). To further understand challenges living with and managing DRE, a team of medical anthropologists conducted ethnographic field assessments with patients to qualitatively understand their experience with DRE across the United States. In addition, healthcare provider assessments were conducted in community clinics and Comprehensive Epilepsy Centers to further uncover patient-provider treatment gaps. We identified four distinct stages of the treatment and management journey defined by patients' perceived control over their epilepsy: Gripped in the Panic Zone, Diligently Tracking to Plan, Riding a Rollercoaster in the Dark, and Reframing Priorities to Redefine Treatment Success. We found that patients sought resources to streamline communication with their care team, enhanced education on treatment options beyond medications, and long-term resources to protect against a decline in control over managing their epilepsy once drugresistant. Likewise, treatment management optimization strategies are provided to improve current DRE standard of care with respect to identified patient-provider gaps. These include the use of digital disease management tools, standardizing neuropsychiatrists into patients' initial care team, and introducing surgical and non-pharmacological treatment options upon epilepsy and DRE diagnoses, respectively. This ethnographic study uncovers numerous patient-provider gaps, thereby presenting a conceptual framework to advance DRE treatment. Further Incentivization from professional societies and healthcare systems to support standardization of the treatment optimization strategies provided herein into clinical practice is needed.

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Quality of Life and Its Determinants in Adult Drug Refractory Epilepsy Patients Who Were Not Candidates for Epilepsy Surgery: A Correlational Study

Cited by 10 publications

References 15 publications

Quantifying the burden of generalized tonic‐clonic seizures in patients with drug‐resistant epilepsy

Quantifying the burden of generalized tonic‐clonic seizures in patients with drug‐resistant epilepsy

Medication-Related Quality of Life in Thai Epilepsy Patients

A journey into the unknown: An ethnographic examination of drug-resistant epilepsy treatment and management in the United States

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