‘Breaking Good News’: Neurologists' experiences of discussing SUDEP with patients in Scotland

Nisbet, Tom; Turbull, Sue; Mulhern, Sharon; Razvi, Saif

doi:10.1016/j.yebeh.2017.02.024

Cited by 11 publications

(9 citation statements)

References 27 publications

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“…Having the discussion and getting informed leads to better management of the disease and better therapy adherence in addition to allowing the caregivers to taking precautionary measures (142,145,146,154). Clinicians appear to anticipate that patients will be anxious or distressed discussing SUDEP but contrary to the expectations, being informed on SUDEP risk does not have adverse effects on quality of life or mood itself, according to studies (146,154,155). Negative reactions to SUDEP discussions are common, however, they do not have long term effects, and proper communication skills combined with experience can minimize them (156).…”

Section: How and When To Communicate With The Patients And Caregiversmentioning

confidence: 99%

Let’s talk SUDEP

Elmalı

Bebek

Baykan

2019

Archives of Neuropsychiatry

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Sudden unexplained death in epilepsy (SUDEP) is a devastating complication of epilepsy which was under-recognized in the recent past despite its clear importance. In this review, we examine the definition of SUDEP, revise current pathophysiological theories, discuss risk factors and preventative measures, disclose tools for appraising the SUDEP risk, and last but not least dwell upon announcing and explaining the SUDEP risk to the patients and their caretakers. We aim to aid the clinicians in their responsibility of knowing SUDEP, explaining the SUDEP risk to their patients in a reasonable and sensible way and whenever possible, preventing SUDEP. Future studies are definitely needed to increase scientific knowledge and awareness related to this prioritized topic with malign consequences.

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Section: How and When To Communicate With The Patients And Caregiversmentioning

confidence: 99%

Let’s talk SUDEP

Elmalı

Bebek

Baykan

2019

Archives of Neuropsychiatry

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“…(12, p.2) As discussed, reasons of why HCPs discuss the topic vary. The worry of a negative emotional reaction causes some physicians to not discuss the topic unless questioned (22,23,26).…”

Section: Discussion Of Epilepsy-related Death By Hcpsmentioning

confidence: 99%

“…In terms of the most effective methods of providing information, multiple avenues have been discussed (e.g., pamphlets, HCP discussions, internet, etc.) (6,10,11,13,14,17,18,20,(22)(23)(24). Although some individuals were satisfied with information presented online, there was also a preference to being provided with SUDEP information by their clinician, "I'd rather ask them [clinicians] rather than get a second hand opinion online" (10, p.235-236).…”

Section: How Information Is and Should Be Providedmentioning

confidence: 99%

“…Family physicians and emergency department staff should not be the first to initiate this discussion (6,13,14). As important of how the information concerning epilepsy-related death should be discussed, the timing of the discussion was important as well (10,11,16,20,22,23,25).…”

Section: How Information Is and Should Be Providedmentioning

confidence: 99%

“…Discussed in earlier sections, there was an emotional impact that has been shown in relation to discussing SUDEP, living with the possibility of SUDEP, as well as coping with the loss of a close family member, friend, or spouse/partner (6,13,14,17,19). Although not always maintained over a long period of time, anger, worry, shock, stress, guilt, and fear were common emotional responses to learning about SUDEP (6,10,11,13,14,16,22,23,26). "I was totally shocked.…”

Section: Emotional Impactmentioning

confidence: 99%

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Qualitative insights into the feelings, knowledge, and impact of SUDEP: A narrative synthesis

Collard

Regmi

2019

Epilepsy & Behavior

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People with epilepsy (PWE) have a two-to-threefold increased chance of premature death due to the condition (1). Epilepsy-related deaths are most commonly caused by epilepsyrelated accidents, suicide as a result of ill mental health, status epilepticus and sudden unexpected death in epilepsy (SUDEP) (2, 3). Uncertainty and fear surrounding the possibility of unexpected death causes PWE to desire to learn more about this aspect of living with epilepsy, particularly those with refractory epilepsy (4). SUDEP is the most common cause of death for PWE (5), yet PWE are not always told about this high risk (6). Although research within epilepsy-related death causes and prevention has increased, the qualitative insight of PWE, their family, friends, and healthcare providers (HCP) needs to be presented. This would enable further insight into what may aid adherence to management strategies, what is known about SUDEP, and the psychosocial impact the knowledge of SUDEP has upon the PWE and those around them who love and care for them. In presenting this literature, it is hoped that this could help prevent and promote interventions of unexpected death of people with epilepsy.. Addressing this need, we aimed to: a) present the experiences of PWE (e.g. children, teenagers, adults) discussing their thoughts and beliefs of SUDEP, what PWE have been told about SUDEP by their HCP, and their thoughts and feelings about interventions to prevent unexpected death; b) friends/family of PWE 's thoughts and feelings of SUDEP, and their thoughts and feelings on interventions to prevent SUDEP; and c), HCPs' discussion of the topic with PWE and interventions and/or prevention methods HCPs believe work best. 2. Material and methods We carried out a narrative synthesis to obtain a rigorous review of the qualitative research and grey literature within epilepsy-related death. This was through combining different types of evidence (e.g., qualitative research, mixed-methods research, grey literature) and examining relationships within and between studies and reports (7). 2.1 Search strategy: A comprehensive electronic literature search of all relevant peerreviewed qualitative studies and grey literature was conducted (see Figure 1). Databases

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Keep safe: The when, why and how of epilepsy risk communication

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Page

Shankar

et al. 2020

Seizure

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Risk communication between clinicians and people with epilepsy (PWE) and their families is under researched. There is limited guidance about when and how to have these discussions. This paper explores the current evidence on quality of risk related conversations in epilepsy and suggests a concept of an evidence-based guideline for person centred structured risk communication. Methods: A literature search of four electronic database, Ovid Medline, Ovid Embase, PUBMED, and CINAHL, was conducted by two independent reviewers using relevant search terms following the principals of the PRISMA guidance. No limits were applied. Supplementary searches included using backwards and forwards citation searching. A predesigned inclusion and exclusion criteria was administered to the identified results. Results: From 376 results identified, 17 studies met the final criteria of which ten were quantitative, five qualitative and two mixed methods. Perspectives of PWE and clinicians were represented.Extracted data was clustered into three domains: communication initiation (e.g. timing, individual tailoring); communication methods (preference for face to face with neurologists); and communication content (acknowledging the anxiety produced by risk communication, the benefits of being self-aware, normalising risk etc.). No papers focused on conversation structure (e.g. helpful phrases), or the best locations to hold conversations. Conclusion: More research is needed to develop structured communication of risk. An attempt has been made to put current evidence into this format. Clearer guidance will enhance clinicians' confidence in communicating person centred epilepsy risk with PWE and their families thus improving outcomes.

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‘Breaking Good News’: Neurologists' experiences of discussing SUDEP with patients in Scotland

Cited by 11 publications

References 27 publications

Let’s talk SUDEP

Let’s talk SUDEP

Qualitative insights into the feelings, knowledge, and impact of SUDEP: A narrative synthesis

Keep safe: The when, why and how of epilepsy risk communication

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