Skip to main content

Advertisement

SpringerLink
Log in

Sudden unexpected death in epilepsy (SUDEP): a pilot study on truth telling among Italian epileptologists

  • Brief Communication
  • Published:
Neurological Sciences Aims and scope Submit manuscript

Abstract

Sudden unexpected death in epilepsy (SUDEP) is a syndrome where a person with epilepsy dies suddenly and no other cause of death is found. The question of informing patients and their families about SUDEP remains a problematic issue. The aim of this study is to explore whether Italian physicians interested in epilepsy believe that they should discuss SUDEP with patients and/or their families. A total of 315 questionnaire were distributed, of which 195 (61.9%) were returned. Seventeen respondents (8.76%) discussed SUDEP with all of their patients, 38 (19.59%) with the majority of patients, 120 (61.85%) with very few of their patients and 15 (7.73%) with none of their patients. No statistical differences among groups were found for gender, professional age (≤10 years; ≥11 years≤20 years; ≥21 years≤30 years; ≥31 years) and medical specialty (neurologists vs. others). Open questions offered insights into the physicians’ problem of managing the negative emotions of patients/family and why the physicians decided to give information.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

References

  1. Mohanraj R, Norrie J, Stephen LJ, Kelly K, Hitiris N, Brodie MJ (2006) Mortality in adults with newly diagnosed and chronic epilepsy: a retrospective study. Lancet Neurol 5:481–487

    Article  PubMed  Google Scholar 

  2. Nashef L (1997) Sudden death in epilepsy: terminology and definition. Epilepsia 38:S6–S8

    Article  PubMed  CAS  Google Scholar 

  3. Pedley TA, Hauser WA (2002) Sudden death in epilepsy: a wake-up call for management. Lancet 359:1790–1791

    Article  PubMed  Google Scholar 

  4. Breningstall GN (2001) Mortality in pediatric epilepsy. Pediatr Neurol 25:9–16

    Article  PubMed  CAS  Google Scholar 

  5. Lhatoo SD, Johnson AL, Goodridge DM, MacDonald BK, Sander JW, Shorvon SD (2001) Mortality in epilepsy in the first 11–14 years after diagnosis: multivariate analysis of a long-term, prospective, population-based study. Ann Neurol 49:336–344

    Article  PubMed  CAS  Google Scholar 

  6. Johnston A, Smith P (2007) Sudden unexpected death in epilepsy. Expert Rev Neurother 7:1751–1761

    Article  PubMed  Google Scholar 

  7. Brodie MJ, Holmes GL (2008) Should all patients be told about sudden unexpected death in epilepsy (SUDEP)? Pros and cons. Epilepsia 49(Suppl. 9):99–101

    Article  PubMed  Google Scholar 

  8. Sanya EO (2005) Increasing awareness about sudden unexplained death in epilepsy—a review. Afr J Med Med Sci 34:323–327

    PubMed  CAS  Google Scholar 

  9. Nashef L, Garner S, Sander JW, Fish DR, Shorvon SD (1998) Circumstances of death in sudden death in epilepsy: interviews of bereaved relatives. J Neurol Neurosurg Psychiatry 64:349–352

    Article  PubMed  CAS  Google Scholar 

  10. Beran RG, Weber S, Sungaran R, Venn N, Hung A (2004) Review of the legal obligations of the doctor to discuss sudden unexplained death in epilepsy (SUDEP)—a cohort controlled comparative cross-matched study in an outpatient epilepsy clinic. Seizure 13:523–528

    Article  PubMed  Google Scholar 

  11. Morton B, Richardson A, Duncan A (2006) Sudden unexpected death in epilepsy (SUDEP): don’t ask, don’t tell. J Neurol Neurosurg Psychiatry 77:199–202

    Article  PubMed  CAS  Google Scholar 

  12. Sokol DK (2006) How the doctor’s nose has shortened over time; a historical overview of the truth-telling debate in the doctor–patient relationship. J R Soc Med 99:632–636

    Article  PubMed  Google Scholar 

  13. Surbone A, Ritossa C, Spagnolo AG (2004) Evolution of truth telling attitudes and practices in Italy. Crit Rev Oncol Hematol 52:165–172

    Article  PubMed  Google Scholar 

  14. Vincent JL (1998) Information in the ICU: are we being honest with our patients? The results of a European questionnaire. Intensive Care Med 24:1251–1256

    Article  PubMed  CAS  Google Scholar 

  15. Costantini M, Marasso G, Montella M, Borgia P, Cecioni R, Beccaro M, Sguazzotti E, Bruzzi P (2006) Diagnosis and prognosis disclosure among cancer patients. Results from an Italian mortality follow-back survey. Ann Oncol 17:853–859

    Article  PubMed  CAS  Google Scholar 

  16. Pope C, Ziebland S, Mays N (2000) Analysing qualitative data. BMJ 320:114–116

    Article  PubMed  CAS  Google Scholar 

  17. Van den Heever P (2005) Pleading the defence of therapeutic privilege. S Afr Med J 95(6):420–421

    PubMed  Google Scholar 

  18. Buckman R (1992) How to break bad news. John Hopkins University Press, Baltimore

    Google Scholar 

  19. Monte CP, Arends JB, Tan IY, Aldenkamp AP, Limburg M, de Krom MC (2007) Sudden unexpected death in epilepsy patients: risk factors. A systematic review. Seizure 16:1–7

    Article  PubMed  CAS  Google Scholar 

Download references

Author information

Authors and Affiliations

  1. School of Medicine, University of Milan, Milan, Italy

    Elena Vegni & Egidio Aldo Moja

  2. Centro CURA, University of Milan, Milan, Italy

    Daniela Leone

  3. Epilepsy Centre, School of Medicine, San Paolo University Hospital, University of Milan, Milan, Italy

    Maria Paola Canevini

  4. Department of Neurological Sciences, University of Bologna, Bologna, Italy

    Paolo Tinuper

  5. Department of Medicine Surgery and Dentistry, San Paolo University Hospital, Via di Rudinì 8, 20142, Milan, Italy

    Elena Vegni & Egidio Aldo Moja

Authors
  1. Elena Vegni
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Daniela Leone
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Maria Paola Canevini
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Paolo Tinuper
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Egidio Aldo Moja
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Elena Vegni.

Rights and permissions

Reprints and permissions

About this article

Cite this article

Vegni, E., Leone, D., Canevini, M.P. et al. Sudden unexpected death in epilepsy (SUDEP): a pilot study on truth telling among Italian epileptologists. Neurol Sci 32, 331–335 (2011). https://doi.org/10.1007/s10072-010-0365-7

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10072-010-0365-7

Keywords

Search

Navigation