Discussion of SUDEP in North America
[Part 3: Challenges; Friedman D]
In the past few years, several studies have reported that neurologists discuss SUDEP with only a minority of their patients with epilepsy. We performed a survey of 1200 neurologists in North America in 2011. This was shortly after the publication of a report on SUDEP, by the joint task force of the American Epilepsy Society and Epilepsy Foundation, recommended that ‘the potentially increased risk of death associated with epilepsy should be disclosed in the context of a comprehensive education program provided to all patients, their families and caregivers’ (So et al., 2009). We found that only 6.8% of U.S. and Canadian neurologists discussed SUDEP with all, or nearly all, of their patients with epilepsy, or their caregivers, while 11.6% never discussed it. Neurologists who saw over 100 patients with epilepsy annually or had a SUDEP were twice as likely to discuss SUDEP. Our results were similar to surveys of neurologists in the United Kingdom (Morton et al., 2006) and Italy (Vegni et al., 2011). As in those surveys, fear of a negative reaction among patients/caregivers, such as causing anxiety or distress, was a common reason given for not discussing SUDEP among the respondents. In a qualitative study of practices of SUDEP disclosure (Miller et al., 2014), clinicians caring for patients with epilepsy (neurologists, epileptologists and advanced practice nurses), reported being aware of the impact of SUDEP but expressed hesitancy about discussing SUDEP themselves. Comments by the participants in these focus groups elaborated on the fear of alienating or distressing patients and caregivers by discussing SUDEP, especially at the time of epilepsy diagnosis or referral, when relationships between practitioner and patients are only forming. A common scenario, in both the survey and focus group participants, was that SUDEP was discussed only when dealing with patients who were not taking their medications or when discussing changing treatment strategies.
One theme discussed in provider focus groups, among those practitioners who did discuss SUDEP near the time of diagnosis, is acknowledgement of the fact that the patients/caregivers would likely learn about SUDEP elsewhere, such as on the Internet, when reading about their condition. Indeed, a study recently reported that Internet searches using Google for the phrase ‘SUDEP epilepsy’ have increased 50-fold between 2004 and 2012 (Brigo et al., 2014). This suggests that many patients and caregivers will likely encounter information about SUDEP when researching their diagnosis, even if they have not been explicitly told about it by their provider. A recent survey of 1,299 patients/caregiver visitors to a single, well-trafficked epilepsy-related website (epilepsy.com) and 547 patients/caregivers at a single busy outpatient practice (Kroner et al., 2014) found that website users were far more likely to have heard about SUDEP. Prior SUDEP knowledge was more common among patients with more severe epilepsy and their caregivers, and among those cared for by epileptologists. Despite the fact that a majority of the respondents who had previously heard about SUDEP experienced some distress, such as fear, anxiety or sadness, when they learned about it, most respondents reported that they had wanted to be informed about it. The majority (71%) wanted to be told regardless of their individual risk. Only a few respondents (3.4%) did not want to be told about SUDEP under any circumstance. In general, fear of dying from epilepsy was a concern for two-thirds of patients/caregivers surveyed. The findings of this large survey were consistent with previous studies that found that the vast majority of parents of children with epilepsy wanted to be informed about SUDEP despite their child’s individual risk, most commonly at the time of diagnosis (Gayatri et al., 2010; Ramachandrannair et al., 2013).
The results of these surveys and focus group studies highlight the discrepancy between what patients and caregivers would like to be told about their illness and what providers are disclosing about SUDEP. They point the way towards a practice that is more responsive to patient/caregiver needs. It is clear that talking about SUDEP can be upsetting for both the patient and the provider but the conversation is vital to the complete understanding of the diagnosis. A provider who initiates the discussion of SUDEP can ensure that patients/caregivers understand their personal risk and strategies to reduce this risk. The hope is that knowledge of SUDEP can improve disease self-management, influencing treatment decisions (changing medications, being evaluated for epilepsy surgery), improving medication adherence, and reducing lifestyle factors that lower seizure thresholds (e.g. alcohol consumption, sleep deprivation). In addition, for many patients who are at low risk for SUDEP, a personalized discussion of SUDEP could alleviate the anxiety that comes from encountering SUDEP through other sources such as an Internet searches on their disorder.
Assistant Professor of Neurology
NYU Langone School of Medicine, New York, USA
How to cite:
Friedman D. Discussion of SUDEP in North America. In: Hanna J, Panelli R, Jeffs T, Chapman D, editors. Continuing the global conversation [online]. SUDEP Action, SUDEP Aware & Epilepsy Australia; 2014 [retrieved day/month/year]. Available from: www.sudepglobalconversation.com.
Brigo F, Igwe SC, Ausserer H, Nardone R, Tezzon F, Bongiovanni LG, et al. Why do people Google epilepsy? An infodemiological study of online behavior for epilepsy-related search terms. Epilepsy Behav 2014;31:67-70.
Gayatri NA, Morrall MC, Jain V, Kashyape P, Pysden K, Ferrie C. Parental and physician beliefs regarding the provision and content of written sudden unexpected death in epilepsy (SUDEP) information. Epilepsia 2010;51:777–82.
Kroner BL, Wright C, Friedman D, Macher K, Preiss L, Misajon J, et al. Characteristics of epilepsy patients and caregivers who either have or have not heard of SUDEP. Epilepsia 2014;55(10):1486-94.
Miller WR, Young N, Friedman D, Buelow JM, Devinsky O. Discussing sudden unexpected death in epilepsy (SUDEP) with patients: practices of health-care providers. Epilepsy Behav 2014;32:38-41.
Morton B, Richardson A, Duncan S. Sudden unexpected death in epilepsy (SUDEP): don’t ask, don’t tell? J Neurol Neurosurg Psychiatry 2006;77:199-202.
RamachandranNair R, Jack SM, Meaney BF, Ronen GM. SUDEP: what do parents want to know? Epilepsy Behav 2013;29(3):560-64.
So EL, Bainbridge J, Buchhalter JR, Donalty J, Donner EJ, Finucane A et al. Report of the American Epilepsy Society and the Epilepsy Foundation joint task force on sudden unexplained death in epilepsy. Epilepsia 2009;50(4):4:917-22.
Vegni E, Leone D, Canevini M P, Tinuper P, Aldo Moja E: Sudden unexpected death in epilepsy (SUDEP): a pilot study on truth telling among Italian epileptologists. Neurol Sci 2011;32(2):331-35.
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