Avoiding Parental Distress When Discussing About Sudep: the Albanian Experience
Jera Kruja, Gentian Vyshka
Med Arh. 2012; 66(3): 201-203

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Abstract

Introduction: Pediatric SUDEP (Sudden Unexpected Death in Epilepsy) is an uncommon event, but its unpredictability has rendered the issue very important to be addressed, under all points of view: medical, moral and legal one. The death of a child has been always considered a dramatic event for the Albanian families, and when it overcomes unexpectedly the emotional reactions might even be more exaggerated. Discussion: Debates about truth-telling on the prognosis, or even on the probability of a sudden death related to the main diagnosis (epilepsy) are old and controversial. Risk factors for SUDEP have been formulated and strategies to confront them have been put in place; however medical (pharmacological) compliance seems by large the most important protective factor. Conclusion: To our opinion, disclosing the risk of a sudden death to the family on a child suffering from epilepsy is a necessary act; timing and ways of disclosure are details that need to be refined case-by-case, in a situation where a general consensus or guidelines are lacking. A step-by-step approach and a gradual informing are helpful and psychologically acceptable from the parents or other relatives.

REFERENCES

1. Nashef L. Sudden unexpected death in epilepsy: terminology and definitions. Epilepsia. 1997; 38(Suppl. 11): S6-S8.

2. Leestma JE, Annegers JF, Brodie MJ, Brown S et al. Sudden unexplained death in epilepsy: observations from a large clinical developmental program. Epilepsia. 1997; 38: 47-55.

3. Thomson T, Nashef L, Ryvlin P. Sudden unexpected death in epilepsy: current knowledge and future directions. Lancet Neurology. 2008; 7: 1021-1031.

4. Donner EJ, Smith CR, Snead OC. Sudden unexplained death in children with epilepsy. Neurology. 2001; 57: 430-434.

5. Camfield P, Camfield C. Sudden unexpected death in people with epilepsy. A pediatric perspective. Sem Pediatr Neurol. 2005; 12: 10-14.

6. Weber P, Bubl R, Blauestein U, Tillmann BU et al. Sudden unexplained death in children with epilepsy: a cohort study with an eighteen year follow-up. Acta Paediatr. 2005; 94: 564-567.

7. Geerts A, Arts WF, Stroink H, Peeters E et al. Course and outcome of childhood epilepsy: a 15-year follow-up of the Dutch Study of Epilepsy in Childhood. Epilepsia. 2010; 51: 1189-1197.

8. Gadgil P, Udani V. Pediatric epilepsy: the Indian experience. J Pediatr Neurosci. 2011; 6: S126-129.

9. Terra VC, Scorza FA, Sakamoto AC, Pinto K et al. Does sudden unexpected death in children with epilepsy occur more frequently in those with high seizure frequency? Arq Neuropsiquiatr. 2009; 67(4): 1001-1002.

10. Nilsson L, Farahmand BY, Persson PG, Thiblin I et al. Risk factors for sudden unexpected death in epilepsy: a case-control study. Lancet. 1999; 353: 888-893.

11. Walczak T. Do antiepileptic drugs play a role in sudden unexpected death in epilepsy? Drug Safety. 2003; 26: 673-683.

12. Appleton RE. Mortality in paediatric epilepsy. Arch Dis Child. 2003; 88: 1091-1094.

13. Pinto K, Scorza FA, Arida RM, Cavalheiro EA. et al. Sudden unexpected death in adolescent with epilepsy: all roads lead to the heart? Cardiology Journal. 2010; 17(X): 1-3.

14. Tavee J, Morris H. Severe postictal laryngospasm as a potential mechanism for sudden unexpected death in epilepsy: a near-miss in an EMU. Epilepsia. 2008; 49: 2113-2117.

15. Bateman LM, Li CS, Seyal M. Ictal hypoxemia in localization-related epilepsy: analysis of incidence, severity and risk factors. Brain. 2008; 131: 3239-3245.

16. Nilsson L, Bergman U, Diwan V, Farahmand BY et al. Antiepileptic drug therapy and its management in sudden unexpected death in epilepsy: a case-control study. Epilepsia. 2001; 42: 667-673.

17. Timmings PL. Sudden unexpected death in epilepsy: is carbamazepine implicated? Seizure. 1998; 7: 289-291.

18. So EL. Sudden unexplained death in epilepsy: epidemiology and risk factors. Neurology Asia. 2011; 16 (Supplement 1): 47-49.

19. Plato. The Republic. Available at http:www.idph.net/conteudos/ebooks/republic.pdf; pg. 34. (Last accessed 20.11.2011).

20. Sokol DK. How the doctor’s nose has shortened over time; a historical overview of the truth-telling debate in the doctor-patient relationship. Journal of the Royal Society of Medicine. 2006; 99: 632-636.

21. 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.

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

23. “Vajtimi i Ajkunës”; [The wailing of Ajkuna]; Albanian version available at http://sq.wikipedia.org/wiki/Eposi_i_kreshnikëve. (Last accessed 24.11.2011).

24. Cushner-Weinstein S, Dassoulas K, Salpekar JA, Henderson SE et al. Parenting stress and childhood epilepsy: the impact of depression, learning and seizure-related factors. Epilepsy and Behavior. 2008; 13: 109-114.

25. Vegni E, Leone D, Canevini MP, Tinuper P et al. Sudden unexpected death in epilepsy (SUDEP): a pilot study on truth telling among Italian epileptologists. Neurol Sci. 2011; 32: 331-335.

26. Patra S, Pemde HK, Singh V, Chandra J et al. Profile of adolescents with severe anemia admitted in a tertiary care hospital in Northern India. Indian J Pediatr. 2011; 78(7): 863-865.

27. Sinani F, Ymaj B, Vyshka G. Overzealous cardiac massage leading to unintentional infant death. BMJ Case Reports. 2011;

28. Haruni A, Vyshka G, Tashko V, Haruni M, Shira P. Parental reactions after diagnosing a child with epilepsy. Albanian Medical Review. 2011; 3: 108-133 (Article in Albanian. Available at: http://ishp.gov.al/publikime/revista%203.pdf. Last accessed 10.12.2011).

29. Langan Y, Nashef L, Sander JW. Case-control study of SUDEP. Neurology. 2005; 64: 1131-1133.

30. Nobili L, Proserpio P, Rubboli G, Montano N, Didato G, Tassinari CA. Sudden unexpected death in epilepsy (SUDEP) and sleep. Sleep Med Rev. 2011; 15(4): 237-246.

31. Guilhoto LM, Loddenkemper T, Vendrame M, Bergin A, Bourgeois BF, Kothare SV. Higher evening antiepileptic drug dose for nocturnal and early-morning seizures. Epilepsy Behavior. 2011; 20(2): 334-337

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