Patients' knowledge on epilepsy and SUDEP improves after a semi-structured health interview

Gutiérrez-Viedma, Álvaro; Sanz-Graciani, Isabel; Romeral-Jiménez, María; Parejo-Carbonell, Beatriz; Serrano-García, Irene; Cuadrado, María‐Luz; Aledo‐Serrano, Ángel; Gil‐Nagel, Antonio; Toledano, Rafael; García‐Morales, Irene

doi:10.1016/j.yebeh.2019.106467

Cited by 13 publications

(8 citation statements)

References 33 publications

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“…Detailed information regarding the reactions and attitudes expressed by patients and caregivers upon the provision of SUDEP information in past studies is provided in Table 3. 26,28,29,30,31,32,33,34,35,36 These differences could be associated with the provision of SUDEP information in a written format during previous studies, whereas the treating neurologist presented SUDEP information in the current study, providing patients with an opportunity to discuss the topic immediately, which might reduce anxiety. Further research should explore these differences and provide practitioners with recommendations for how best to provide potentially distressing information to PWE.…”

Section: Discussionmentioning

confidence: 98%

“…In earlier studies examining the effects of receiving SUDEP information, higher anxiety rates were observed, ranging from 36% to >50%. Detailed information regarding the reactions and attitudes expressed by patients and caregivers upon the provision of SUDEP information in past studies is provided in Table 3 26,28,29,30,31,32,33,34,35,36 . These differences could be associated with the provision of SUDEP information in a written format during previous studies, whereas the treating neurologist presented SUDEP information in the current study, providing patients with an opportunity to discuss the topic immediately, which might reduce anxiety.…”

Section: Discussionmentioning

confidence: 99%

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Prospective, longitudinal, multicenter study on the provision of information regarding sudden unexpected death in epilepsy to adults with epilepsy

et al. 2022

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Objective: Despite increased awareness of the serious epilepsy complication sudden unexpected death in epilepsy (SUDEP), a substantial population of people with epilepsy (PWE) remain poorly informed. Physicians indicate concern that SUDEP information may adversely affect patients' health and quality of life. We examined SUDEP awareness and the immediate and long-term effects of providing SUDEP information to PWE.Methods: Baseline knowledge and behaviors among PWE and behavioral adjustments following the provision of SUDEP information were evaluated in a prospective, multicenter survey using the following validated scales: Neurological Disorders Depression Inventory for Epilepsy for depression symptoms, the EuroQoL five-dimension scale for health-related quality of life (HRQoL), a visual analog scale for overall health, the revised Epilepsy Stigma Scale for perceived stigma, and the Seizure Worry Scale for seizure-related worries. The prospective study collected data through semiquantitative interviews before (baseline), immediately after, and 3 months after the provision of SUDEP information. Results: In total, 236 participants (mean age = 39.3 years, range = 18-77 years, 51.7% women) were enrolled, and 205 (86.9%) completed long-term, 3-month follow-up. One patient died from SUDEP before follow-up. No worsening symptoms from baseline to 3-month follow-up were observed on any scale. At baseline, 27.5% of participants were aware of SUDEP. More than 85% of participants were satisfied with receiving SUDEP information. Three quarters of participants were not concerned by the information, and >80% of participants recommended the provision of SUDEP information to all PWE. Although most patients reported no behavioral adjustments, 24.8% reported strong behavioral adjustments at 3-month follow-up.

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Section: Discussionmentioning

confidence: 98%

Section: Discussionmentioning

confidence: 99%

Prospective, longitudinal, multicenter study on the provision of information regarding sudden unexpected death in epilepsy to adults with epilepsy

et al. 2022

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“…Close monitoring and sleep video-EEG studies are mandatory to assess this relevant issue ( DeGiorgio et al, 2019 ; Hrabok et al, 2021 ). Additionally, in patients at high risk of SUDEP, it is advisable to inform and empower both patient and family about the risk factors and ways to prevent it ( Gutiérrez-Viedma et al, 2019 ).…”

Section: Considerations According To Particular Situationsmentioning

confidence: 99%

Epilepsy treatment in neuro-oncology: A rationale for drug choice in common clinical scenarios

et al. 2022

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Epilepsy represents a challenge in the management of patients with brain tumors. Epileptic seizures are one of the most frequent comorbidities in neuro-oncology and may be the debut symptom of a brain tumor or a complication during its evolution. Epileptogenic mechanisms of brain tumors are not yet fully elucidated, although new factors related to the underlying pathophysiological process with possible treatment implications have been described. In recent years, the development of new anti-seizure medications (ASM), with better pharmacokinetic profiles and fewer side effects, has become a paradigm shift in many clinical scenarios in neuro-oncology, being able, for instance, to adapt epilepsy treatment to specific features of each patient. This is crucial in several situations, such as patients with cognitive/psychiatric comorbidity, pregnancy, or advanced age, among others. In this narrative review, we provide a rationale for decision-making in ASM choice for neuro-oncologic patients, highlighting the strengths and weaknesses of each drug. In addition, according to current literature evidence, we try to answer some of the most frequent questions that arise in daily clinical practice in patients with epilepsy related to brain tumors, such as, which patients are the best candidates for ASM and when to start it, what is the best treatment option for each patient, and what are the major pitfalls to be aware of during follow-up.

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“…Vi tror at kunnskap kan ha en oppdragende effekt ved at pasienter blir mer nøye med å følge et behandlingsregime og mer bevisst på å unngå anfallsfremkallende faktorer Flere studier de siste årene har vist at de aller fleste pasientene ønsker å få denne informasjonen (3,7). En amerikansk spørreundersøkelse blant 94 voksne pasienter med epilepsi viste at alle ønsket informasjon om risikoen for dødsfall, til tross for at 30 % innrømmet at slik kunnskap ga økt frykt (3).…”

Section: Hva øNsker Pasienten?unclassified

Bør epilepsipasienter og pårørende informeres om risikoen for plutselig død?

Nakken¹,

Henning²

2020

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Karl O. Nakken er dr.med., spesialist i nevrologi og tidligere medisinsk ansvarlig ved Nevroklinikken, Spesialsykehuset for epilepsi, fra 2016 deltidspensjonist. Forfatteren har fylt ut ICMJE-skjemaet og oppgir ingen interessekonflikter. OLIVER HENNING Oliver Henning er nevrolog og overlege ved Nevroklinikken, Spesialsykehuset for epilepsi. Forfatteren har fylt ut ICMJE-skjemaet og oppgir ingen interessekonflikter.

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Patients' knowledge on epilepsy and SUDEP improves after a semi-structured health interview

Cited by 13 publications

References 33 publications

Prospective, longitudinal, multicenter study on the provision of information regarding sudden unexpected death in epilepsy to adults with epilepsy

Prospective, longitudinal, multicenter study on the provision of information regarding sudden unexpected death in epilepsy to adults with epilepsy

Epilepsy treatment in neuro-oncology: A rationale for drug choice in common clinical scenarios

Bør epilepsipasienter og pårørende informeres om risikoen for plutselig død?

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