Parental and physician beliefs regarding the provision and content of written sudden unexpected death in epilepsy (SUDEP) information

Epilepsia

Volumn 51, Issue 5, 2010, Pages 777-782

  Gayatri, Neti A ^a   Morrall, Matthew C H J ^a   Jain, Vivek ^b   Kashyape, Pawan ^a   Pysden, Karen ^a   Ferrie, Colin ^a  

^a LEEDS TEACHING HOSPITALS NHS TRUST   (United Kingdom)

^b NINEWELLS HOSPITAL   (United Kingdom)

Author keywords

Children; Epilepsy; Patient information; Sudden death; SUDEP

Indexed keywords

ADOLESCENT; ARTICLE; CHILD; CONTROLLED STUDY; EPILEPSY; HEALTH BELIEF; HEALTH SURVEY; HUMAN; MAJOR CLINICAL STUDY; MEDICAL INFORMATION; PRESCHOOL CHILD; PRIORITY JOURNAL; QUESTIONNAIRE; RISK FACTOR; SCHOOL CHILD; SUDDEN DEATH;

ADOLESCENT; ADULT; ATTITUDE OF HEALTH PERSONNEL; ATTITUDE TO HEALTH; CHILD; CHILD, PRESCHOOL; COMMUNICATION; DEATH, SUDDEN; EPILEPSY; FEMALE; GREAT BRITAIN; HUMANS; INFANT; LEGAL GUARDIANS; MALE; NEUROLOGY; PAMPHLETS; PARENTS; PHYSICIANS; QUESTIONNAIRES; RISK FACTORS; TRUTH DISCLOSURE;

EID: 77951591943     PISSN: 00139580     EISSN: 15281167     Source Type: Journal    
DOI: 10.1111/j.1528-1167.2009.02483.x     Document Type: Article

References (29)

1. Beran RG, Weber S, Sungaran R, Venn N, Hung A. (2004) Review of the legal obligations of the doctor to discuss Sudden Unexpected Death in Epilepsy (SUDEP) - a cohort controlled comparative cross- matched study in an outpatient epilepsy clinic. Seizure 13:523-528. (Pubitemid 39157918)
2. Black AT. (2005) SUDEP: whether to tell and when? Med Law 24:41-49.
3. Callenbach PMC, Westendorp RGJ, Geerts AT, Arts WFM, Peeters EAJ, van Donselaar CA, Boudewyn Peters AC, Stroink H, Brouwer OF. (2001) Mortality risk in children with epilepsy: the Dutch study of epilepsy in childhood. Pediatrics 107:1259-1263. (Pubitemid 32525199)
4. Camfield CS, Camfiled PR, Veugelers PJ. (2002) Death in children with epilepsy: a population-based study. Lancet 359:1891-1895. (Pubitemid 34615766)
5. Do H. (2003) Improving services for people with epilepsy: Department of Health Action Plan in response to the National Clinical Audit of Epilepsy-Related Death. Department of Health Publications, London.
6. Donner EJ, Smith CR, Snead OC. (2001) Sudden unexplained death in children with epilepsy. Neurology 57:430-434. (Pubitemid 32757588)
7. Eiser C, Kopel SJ. (1997) Children's perceptions of health and illness. In Petrie KJ, Weinman JA (Eds) Perceptions of health and illness. Harwood, Netherlands, pp. 47-76.
8. Engel J. (2001) A proposed diagnostic scheme for people with epileptic seizures and with epilepsy: Report of the ILAE Task Force on Classification and Terminology. Epilepsia 42:796-803. (Pubitemid 32605946)
9. Fielding D, Duff A. (1999) Compliance with treatment protocols: interventions for children with chronic illness. Arch Dis Child 80:196-200. (Pubitemid 29119740)
10. General Medical Council. (2007) 0-18 years: Guidance for all doctors. General Medical Council, London.
11. Haller DM, Sanci LA, Sawyer SM, Patton G. (2008) Do young people's illness beliefs affect healthcare? A systematic review J Adolesc Health 42:436-449.
12. Harvey AS, Nolan T, Carlin JB. (1993) Community-based study of mortality in children with epilepsy. Epilepsia 34:594-603. (Pubitemid 23228120)
13. Hirsch LJ, Pedley TA. (2008) Goals of Therapy. In Engel J, Pedley TA (Eds) Epilepsy: a comprehensive textbook Vol. II. Lippincott, Williams & Wilkins, Philadelphia, pp. 1125-1128.
14. Hitiris N, Suratman S, Kelly K, Stephen LJ, Sills G, Brodie MJ. (2006) Sudden unexpected death in epilepsy: a search for risk factors. Epilepsy Behav 10:138-141.
15. Langan Y, Nashef L, Sander JW. (2005) Case-control study of SUDEP. Neurology 64, 7:1131-1133.
16. Leventhal H, Benyamini Y, Brownlee S, Diefenbach M, Leventahl EA, Patrick-Miller L, Robitaille C. (1997) Illness representations: theoretical foundations. In Petrie KJ, Weinman JA (Eds) Perceptions of health and illness. Harwood, Netherlands, pp. 19-45.
17. Lewis S, Higgins S, Goodwin M. (2008) Informing patients about sudden unexpected death in epilepsy: a survey of specialist nurses. Br J Neurosci Nurs 1:30-34.
18. McColl E, Jacoby A, Thomas L, Soutter J, Bamford C, Steen N, Thomas R, Harvey E, Garratt A, Bond J. (2001) Design and use of questionnaires: a review of best practice applicable to surveys of health service staff and patients. Health Technol Assess 5:1-256. (Pubitemid 34071314)
19. Morton B, Richardson A, Duncan S. (2006) Sudden unexpected death in epilepsy (SUDEP): don't ask, don't tell? J Neurol Neurosurg Psychiatry 77:199-202. (Pubitemid 43220842)
20. Nashef L. (1997) Sudden unexpected death in epilepsy: terminology and definitions: International Workshop on Epilepsy and Sudden Death. Epilepsia 38(Suppl.11):S6-S8.
21. Nashef L, Hindocha N, Makoff A. (2007) Risk factors in sudden death in epilepsy: the quest for mechanisms. Epilepsia 48, 5:859-871. (Pubitemid 46763417)
22. Nashef L, Tomson T. (2008) Sudden death in epilepsy. In Engel J, Pedley TA (Eds) Epilepsy: a comprehensive textbook Vol. II. Lippincott, Williams& Wilkins,, Philadelphia, pp. 1991-1998.
23. National Institute for Health and Clinical Excellence (2007). The epilepsies: the diagnosis and management of the epilepsies in adults and children in primary and secondary care. Ref: CG20. DoH, London.
24. Nilsson L, Farahmand BY, Persson PG, Thiblin I, Tomson T. (1999) Risk factors for sudden expected death in epilepsy: a case controlled study. Lancet 353:888-893. (Pubitemid 29126877)
25. Prinjha S, Chapple A, Herxheimer A, McPherson A. (2005) Many people with epilepsy want to know more: a qualitative study. Fam Pract 22:4. (Pubitemid 41487380)
26. Rollnick S, Miller WR, Butler CC. (2008) Motivational interviewing in health care: helping patients change behavior. The Guilford Press, New York & London.
27. So EL, Bainbridge J, Buchhalter JR, Donalty J, Donner EJ, Finucane A, Graves NM, Hirsch LJ, Montouris GD, Temkin NR, Wiebe S, Sierzant TL. (2009) Report of the American Epilepsy Society and the Epilepsy Foundation Joint Task Force on Sudden Explained Death in Epilepsy. Epilepsia 50, 4:917-922.
28. Tomson T, Walczak T, Sillanpaa M, Sander JWA. (2005) Sudden unexpected death in epilepsy: a review of incidence and risk factors. Epilepsia 46(Suppl. 11):54-61. (Pubitemid 44922040)
29. Weber P, Bubl R, Blauenstein U, Tillmann B, Lutschg J. (2005) Sudden unexpected death in children with epilepsy: a cohort study with an eighteen-year follow-up. Acta Paediatr 94:564-567. (Pubitemid 40646679)