Epilepsy-related deaths: An Australian survey of the experiences and needs of people bereaved by epilepsy

Seizure

Volumn 29, Issue , 2015, Pages 162-168

  Bellon, Michelle ^a   Panelli, Rosemary June ^b,c   Rillotta, Fiona ^a  

^a FLINDERS UNIVERSITY   (Australia)

^b UNIVERSITY OF MELBOURNE   (Australia)

^c SUDEP ACTION   (United Kingdom)

Author keywords

Bereavement; Death; Epilepsy; Patient education; Risk communication

Indexed keywords

ADOLESCENT; ADULT; AGED; ARTICLE; AUSTRALIA; BEREAVEMENT; CAUSE OF DEATH; CHILD; DEATH; DROWNING; EPILEPSY; FEMALE; HEALTH SURVEY; HEART ARREST; HUMAN; MAJOR CLINICAL STUDY; MALE; PRIORITY JOURNAL; RISK ASSESSMENT; SUFFOCATION; TRAFFIC ACCIDENT; EPIDEMIOLOGY; FAMILY; FRIEND; HEALTH EDUCATION; INTERPERSONAL COMMUNICATION; MIDDLE AGED; MORTALITY; PERCEPTION; PSYCHOLOGY; QUESTIONNAIRE; RISK; SOCIAL SUPPORT; TIME; VERY ELDERLY; YOUNG ADULT;

ADOLESCENT; ADULT; AGED; AGED, 80 AND OVER; AUSTRALIA; BEREAVEMENT; CHILD; COMMUNICATION; DEATH; EPILEPSY; FAMILY; FEMALE; FRIENDS; HEALTH EDUCATION; HUMANS; MALE; MIDDLE AGED; PERCEPTION; RISK; SOCIAL SUPPORT; SURVEYS AND QUESTIONNAIRES; TIME FACTORS; YOUNG ADULT;

EID: 84930975564     PISSN: 10591311     EISSN: 15322688     Source Type: Journal    
DOI: 10.1016/j.seizure.2015.05.007     Document Type: Article

References (37)

1. R. Shankar, D. Cox, V. Jalihal, S. Brown, J. Hanna, and B. McLean Sudden unexpected death in epilepsy (SUDEP): development of a safety checklist Seizure 22 10 2013 812 817
2. A. Gaitatzis, and J.W. Sander The mortality of epilepsy revisited Epileptic Disord 6 1 2004 3 13
3. D.M. Ficker, E.L. So, W.K. Shen, J.F. Annegers, P.C. O'Brien, and G.D. Cascino Population-based study of the incidence of sudden unexplained death in epilepsy Neurology 51 5 1998 1270 1274
4. L. Nashef, E.L. So, P. Ryvlin, and T. Tomson Unifying the definitions of sudden unexpected death in epilepsy Epilepsia 53 2 2012 227 233
5. S. Shorvon, and T. Tomson Sudden unexpected death in epilepsy Lancet 378 9808 2011 2028 2038
6. D. Friedman, and L.J. Hirsch Sudden unexpected death in epilepsy - an overview of current understanding and future perspectives European Neurological Review 7 1 2012 67 71
7. C. Kennelly, and J. Riesel Sudden death and epilepsy: the views and experiences of bereaved relatives and carers 2002 UK Epilepsy Bereaved Available from: https://www.sudep.org/sudden-death-and-epilepsy# [cited 2014]
8. Australian Bureau of Statistics (ABS) 3220.0 Population projections 2012 to 2101 2013 ABS Canberra
9. W. D'Souza, S. Quinn, J. Fryer, B. Taylor, D. Ficker, and T. O'Brien The prevalence and demographic distribution of treated epilepsy: a community-based study in Tasmania, Australia Acta Neurol Scand 125 2 2012 96 104
10. Australian Bureau of Statistics (ABS) 3303.0 Causes of death, Australia, 2012 2014 ABS Canberra
11. Australian Bureau of Statistics (ABS) General Record of Incidence of Mortality (GRIM) Books - Epilepsy 2010 ABS Canberra
12. D.J. Thurman The epidemiology of SUDEP: a public health perspective Epilepsy Currents 13 2 Suppl 2013 9
13. M.Q. Patton Qualitative evaluation and research methods 2nd ed. 1990 Sage Newbury Park, CA
14. V. Braun, and V. Clarke Using thematic analysis in psychology Qualitative Research in Psychology 3 2 2006 77 101
15. D. Chapman, B. Moss, R. Panelli, and R. Pollard Sudden unexpected death in epilepsy: a global conversation 2005 Epilepsy Australia & Epilepsy Bereaved Camberwell
16. D. Chapman, R. Panelli, J. Hanna, and T. Jeffs Sudden unexpected death in epilepsy: continuing the global conversation 2011 Epilepsy Australia, Epilepsy Bereaved & SUDEP Aware Camberwell
17. B. Morton, A. Richardson, and S. Duncan Sudden unexpected death in epilepsy (SUDEP): don't ask, don't tell? J Neurol Neurosurg Psychiatry 77 2 2006 199 202
18. E. Vegni, D. Leone, M. Canevini, P. Tinuper, and E. Moja Sudden unexpected death in epilepsy (SUDEP): a pilot study on truth telling among Italian epileptologists Neurological Sciences 32 2 2011 331 335
19. B. Waddell, K. McColl, C. Turner, A. Norman, A. Coker, and K. White Are we discussing SUDEP? A retrospective case note analysis Seizure 22 1 2013 74 76
20. W.R. Miller, N. Young, D. Friedman, J.M. Buelow, and O. Devinsky Discussing sudden unexpected death in epilepsy (SUDEP) with patients: practices of health-care providers Epilepsy Behav 32 2014 38 41
21. L. Jones, and J.T. Naude Sudden unexpected death in epilepsy information provision to parents of children with epilepsy - a service evaluation J Neurol Neurosurg Psychiatry 84 11 2013 e2
22. B.L. Kroner, C. Wright, D. Friedman, K. Macher, L. Preiss, and J. Misajon Characteristics of epilepsy patients and caregivers who either have or have not heard of SUDEP Epilepsia 55 10 2014 1486 1494
23. N.J. Hanna, M. Black, J.W.S. Sander, W.H. Smithson, R. Appleton, and S. Brown The national sentinel clinical audit of epilepsy related death: epilepsy - death in the shadows 2002 The Stationary Office Available from: https://www.sudep.org/files/sudepaction/nationalsentinelreport1.pdf
24. Institute of Medicine Epilepsy across the spectrum: promoting health and understanding 2012 The National Academies Press Washington, DC Available from: https://download.nap.edu/catalog.php?record-id=13379.
25. E.L. So, J. Bainbridge, J.R. Buchhalter, J. Donalty, E.J. Donner, and A. Finucane Report of the American Epilepsy Society and the Epilepsy Foundation Joint Task Force on Sudden Unexplained Death in Epilepsy Epilepsia 50 4 2009 917 922
26. J.R. Hughes A review of sudden unexpected death in epilepsy: prediction of patients at risk Epilepsy Behav 14 2 2009 280 287
27. R. Surges, R.D. Thijs, H.L. Tan, and J.W. Sander Sudden unexpected death in epilepsy: risk factors and potential pathomechanisms Nat Rev Neurol 5 9 2009 492 504
28. E. Faught, M.S. Duh, J.R. Weiner, A. Guerin, and M.C. Cunnington Nonadherence to antiepileptic drugs and increased mortality: findings from the RANSOM study Neurology 71 20 2008 1572 1578
29. R. Shankar, V. Jalihal, M. Walker, R. Laugharne, B. McLean, and E. Carlyon A community study in Cornwall UK of sudden unexpected death in epilepsy (SUDEP) in a 9-year population sample Seizure 23 5 2014 382 385
30. Scottish Intercollegiate Guidelines Network Diagnosis and Management of Epilepsy in Adults Edinburgh 2003 Scottish Intercollegiate Guidelines Network Available from: http://www.sign.ac.uk/pdf/sign70.pdf
31. National Institute for Health and Care Excellence The epilepsies: the diagnosis and management of the epilepsies in adults and children in primary and secondary care, CG137 2012 NICE London Available from: http://publications.nice.org.uk/the-epilepsies-the-diagnosis-and-management-of-the-epilepsies-in-adults-and-children-in-primary-and-cg137/guidance#coping-with-epilepsy [accessed October 2014]
32. A.J.M. Duff Determination of Sheriff Alistair Duff, Sheriff of Tayside Central and Fife at Dundee. Inquiry held under fatal accidents and sudden deaths inquiry (Scotland) Act 1976 into the deaths of Erin Casey and Christina Fiorre Ilia 2011
33. R. Beran SUDEP revisited - a decade on: have circumstances changed Seizure 27 2015 47 50
34. N.A. Gayatri, M.C. Morrall, V. Jain, P. Kashyape, K. Pysden, and C. Ferrie Parental and physician beliefs regarding the provision and content of written sudden unexpected death in epilepsy (SUDEP) information Epilepsia 51 5 2010 777 782
35. R. RamachandranNair, S.M. Jack, B.F. Meaney, and G.M. Ronen SUDEP: what do parents want to know? Epilepsy Behav 29 3 2013 560 564
36. Department of Health (DOH) Annual report of the Chief Medical Officer of the Department of Health 2001: epilepsy death in the shadows 2001 DOH UK Available from: http://webarchive.nationalarchives.gov.uk/20130107105354/http://www.dh.gov.uk/prod-consum-dh/groups/dh-digitalassets/@dh/@en/documents/digitalasset/dh-4082273.pdf [cited 07.07.14]
37. Australian Bureau of Statistics (ABS) 81460.0 Household use of information technology, Australia 2012-2013 2014 ABS Canberra