SUDEP: What do parents want to know?

RamachandranNair, Rajesh; Jack, Susan M.; Meaney, Brandon; Ronen, Gabriel M.

doi:10.1016/j.yebeh.2013.09.040

Cited by 84 publications

(141 citation statements)

References 14 publications

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“…First, they would like to discuss more thoroughly during a face‐to‐face consult what the results could mean for their caring activities, for example with respect to the organisation of adequate care aid. A similar need with regard to communicating genetic diagnoses was reported by Ashtiani et al and Ramachandrannair , which indicates that this is a longstanding and shared concern of parents of paediatric patients. Second, parents expressed that they would like to be kept informed more often about the progress of the WES research.…”

Section: Discussionsupporting

confidence: 68%

Evaluating a counselling strategy for diagnostic WES in paediatric neurology: an exploration of parents' information and communication needs

Krabbenborg¹,

Schieving

Kleefstra

et al. 2015

Clinical Genetics

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As whole exome sequencing (WES) is just starting to be used as a diagnostic tool in paediatric neurology for children with a neurological disorder, and patient experiences and preferences with regard to counselling are relatively underexplored. This article explores experiences and preferences of parents with pre-test and post-test counselling in a trial that uses WES for diagnostics. Second, it maps information and communication needs which exceed the counselling protocol, in order to acquire insight into how it can be improved. Data were gathered through in-depth interviews with parents of 15 children who were included in the trial. Information and communication needs of parents differed from the protocol with respect to (i) the type and amount of information provided about WES research, (ii) incidental findings, (iii) communication about progress of the study, and (iv) the communication of the results. Furthermore, parents preferred to have more of a communicative exchange with health care providers about their daily struggles and concerns related to their life with a diseased child and wanted to know how a diagnosis could offer help. There are different ways to meet parental needs, but we suggest that assigning a case manager might be a helpful option that deserves further exploration.

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Section: Discussionsupporting

confidence: 68%

Evaluating a counselling strategy for diagnostic WES in paediatric neurology: an exploration of parents' information and communication needs

Krabbenborg¹,

Schieving

Kleefstra

et al. 2015

Clinical Genetics

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“…While recent Epilepsy Foundation/AES guidelines recommend some counseling about SUDEP as part of general epilepsy education, it is not clear how well these recommendations have been disseminated to the neurology community, especially among general neurologists and other non-specialists. Further work is needed to expand education about SUDEP and provide guidance to practioners about how to best counsel their patients because there is mounting evidence that patients and caregivers[10], [15] would like to be told about this rare consequence of their epilepsy.…”

Section: Discussionmentioning

confidence: 99%

Sudden unexpected death in epilepsy: Knowledge and experience among U.S. and Canadian neurologists

Friedman

Donner

Stephens

et al. 2014

Epilepsy & Behavior

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Importance Sudden unexpected death in epilepsy (SUDEP) is a common cause of mortality in patients with the disease but it is unknown how neurologists disclose this risk when counseling patients. Objective Examine SUDEP discussion practices of neurologists in the U.S. and Canada. Design An electronic, web-based survey was sent to 17558 neurologists in the U.S. and Canada. Survey questions included frequency of SUDEP discussion, reasons for discussing/not discussing SUDEP, timing of SUDEP discussions, and perceived patient reactions. We examined factors that influence the frequency of SUDEP discussion and perceived patient response using multivariate logistic regression. Setting Survey of U.S. and Canadian neurologists Participants Neurologists who completed post-graduate training and devoted >5% of their time to patient care. Results There was a response rate of 9.3%; 1200 respondents met eligibility criteria and completed surveys. Only 6.8% of respondents discussed SUDEP with nearly all (>90% of the time) of their patients with epilepsy/caregivers while 11.6% never discussed it. Factors that independently predicted whether SUDEP was discussed nearly all of the time were: number of epilepsy patients seen annually (OR 2.01, 95% CI 1.20-3.37, p < 0.01) and if the respondent had a SUDEP case in the past 24 months (OR 2.27, 95% CI: 1.37-3.66, p < 0.01). A majority of respondents (59.5%) reported that negative reactions were the most common response to a discussion of SUDEP. Having additional epilepsy/neurophysiology training was associated with an increased risk of a perceived negative response (OR 1.36, CI: 1.02-1.82, p = 0.038) while years in practice (OR 0.85, CI: 0.77 - 0.95, p < 0.005) and seeing both adults and children (OR 0.15, CI: 0.032-0.74, p = 0.02) were associated with a decreased likelihood of negative response. Conclusions U.S. and Canadian neurologists rarely discuss SUDEP with all patients with epilepsy/caregivers though discussions are more likely among neurologists who frequently see epilepsy patients or had a recent SUDEP in their practice. Perceived negative reactions to SUDEP discussions are common but not universal; more experienced neurologists may be less likely to encounter negative reactions suggesting there may be ways to frame the discussion that minimizes patient/caregiver distress.

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“…While the literature regarding specific paediatric risk factors for SUDEP is sparse, there is a relatively strong literature on the wishes of parents regarding SUDEP risk disclosure. Qualitative and quantitative research supports the finding that parents of children with epilepsy want to be informed of SUDEP risk (Gayatri et al ., ; Ramachandrannair et al ., ). Health care providers are therefore encouraged to discuss this risk with families and young persons, where appropriate.…”

Section: Sudep In Childrenmentioning

confidence: 99%

Sudden unexpected death in epilepsy (SUDEP): what every neurologist should know

Shankar

Donner

McLean

et al. 2017

Epileptic Disorders

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This review aims to empower general neurologists to provide better informed person‐centred advice on sudden unexpected death in epilepsy (SUDEP) to people with epilepsy in order to help keep them safe. Past and present evidence is consolidated in order to inform readers about SUDEP, and up‐to‐date insights into the epidemiology, diagnostic classification, pathophysiology, risk factors, influence of co‐morbidity, and importance of sensitive person‐centred communication are outlined. This review provides “fingertip” information to the practicing neurologist with regards to identifying and communicating risks for SUDEP and suggests practical measures for managing these risks in partnership with the patient.

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SUDEP: What do parents want to know?

Cited by 84 publications

References 14 publications

Evaluating a counselling strategy for diagnostic WES in paediatric neurology: an exploration of parents' information and communication needs

Evaluating a counselling strategy for diagnostic WES in paediatric neurology: an exploration of parents' information and communication needs

Sudden unexpected death in epilepsy: Knowledge and experience among U.S. and Canadian neurologists

Sudden unexpected death in epilepsy (SUDEP): what every neurologist should know

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