Internet accounts of serious adverse drug reactions: A study of experiences of stevens-johnson syndrome and toxic epidermal necrolysis

Drug Safety

Volumn 35, Issue 12, 2012, Pages 1159-1170

  Butt, Tehreem F ^a   Cox, Anthony R ^b,c   Oyebode, Jan R ^c,d   Ferner, Robin E ^b,c  

^a BROOMFIELD HOSPITAL   (United Kingdom)

^b CITY HOSPITAL   (United Kingdom)

^c UNIVERSITY OF BIRMINGHAM   (United Kingdom)

^d BIRMINGHAM AND SOLIHULL MENTAL HEALTH NHS FOUNDATION TRUST   (United Kingdom)

Author keywords

Adverse drug reactions; Electronic information services; Stevens Johnson syndrome; Toxic epidermal necrolysis

Indexed keywords

AMINOPENICILLIN; CARBAMAZEPINE; CEPHALOSPORIN DERIVATIVE; COTRIMOXAZOLE; IBUPROFEN; LAMOTRIGINE; MACROLIDE; PENICILLIN DERIVATIVE; PHENYTOIN; SIMVASTATIN; SULFONAMIDE; TETRACYCLINE DERIVATIVE;

ARTICLE; AWARENESS; FEAR; FEMALE; HEALTH PRACTITIONER; HUMAN; INTERNET; MALE; MOTIVATION; PRIORITY JOURNAL; RECURRENCE RISK; RELATIVE; SOCIAL SUPPORT; STEVENS JOHNSON SYNDROME; SURVIVOR; TOXIC EPIDERMAL NECROLYSIS; VISUAL IMPAIRMENT;

DRUG TOXICITY; EPIDERMAL NECROLYSIS, TOXIC; HUMANS; INTERNET; PHARMACEUTICAL PREPARATIONS; STEVENS-JOHNSON SYNDROME;

EID: 84868618360     PISSN: 01145916     EISSN: 11791942     Source Type: Journal    
DOI: 10.2165/11631950-000000000-00000     Document Type: Article

References (29)

1. French LE. Toxic epidermal necrolysis and Stevens Johnson Syndrome: our current understanding. Allergol Int 2006; 55: 9-16
2. Bastuji-Garin S, Rzany B, Stern RS, et al. Clinical classification of cases of toxic epidermal Necrolysis, Stevens-Johnson syndrome, and erythema multiforme. Arch Dermatol 1993; 129 (1): 92-6 (Pubitemid 23029676)
3. Roujeau JC, Stern RS. Severe cutaneous adverse reactions to drugs. N Engl J Med 1994; 331: 1272-85 (Pubitemid 24333193)
4. Butt TF, Cox AR, Lewis H, et al. Patient experiences of serious adverse drug reactions and their attitudes to medicines: a qualitative study of survivors of Stevens-Johnson Syndrome and Toxic Epidermal Necrolysis in the UK. Drug Saf 2011; 34 (4): 319-28
5. Kinnane NA, Milne DJ. The role of the internet in supporting and informing carers of people with cancer: a literature review. Support Care Cancer 2010; 18 (9): 1123-36
6. Mo PKH, Coulson NS. Exploring the communication of social support within virtual communities: a content analysis of messages posted to an online HIV/AIDS support group. Cyberpsychol Behav 2008; 11 (3): 371-4 (Pubitemid 351809519)
7. Overberg R, Otten W, de Man A, et al. How breast cancer patients want to search for and retrieve information from stories of other patients on the internet: an online randomised controlled experiment. J Med Internet Res 2010; 12 (1): e7
8. Kim S. Content analysis of cancer blog posts. J Med Libr Assoc 2009; 97 (4): 260-6
9. Dickerson SS, Boehmke M, Ogle C, et al. Seeking and managing hope: patients' experiences using the internet for cancer care. Oncol Nurs Forum 2006; 33 (1): 8-17
10. Mo PKH, Coulson NS. Living with HIV/AIDS and use of online support groups. J Health Psychol 2010; 15 (3): 339-50
11. Rozmovits L, Ziebland S. What do patients with prostate or breast cancer want from an Internet site? A qualitative study of information needs. Patient Educ Couns 2004; 53 (1): 57-64 (Pubitemid 38519986)
12. Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol 2006; 3 (2): 77-101
13. Stevens-Johnson Syndrome Foundation [online]. Available from URL: http://www.sjsupport.org [Accessed 2010 Jun]
14. Patient.co.uk: trusted medical information and support [online]. Available from URL: http://www.patient.co.uk [Accessed 2010 Jun]
15. Joe Way: be inspored y [online]. Available from URL: http://www.joeway. co.uk [Accessed 2010 Jun]
16. Milne: Stevens-Johnson Syndrome Society [online]. Available from URL: http://www.milnesjs.com [Accessed 2010 Jun]
17. Roujeau JC, Kelly JP, Naldi L, et al. Medication use and the risk of Stevens-Johnson Syndrome or Toxic Epidermal Necrolysis. N Engl J Med 1995; 333 (24): 1600-7
18. Hazell L, Shakir SAW. Under-reporting of adverse drug reactions: a systematic review. Drug Saf 2006; 29 (5): 385-96
19. Anderson M, Choonara I. A systematic review of safety monitoring and drug toxicity in published randomised controlled trials of antiepileptic drugs in children over a 10-year period. Arch Dis Child 2010; 95: 731-8
20. Blenkinsopp A, Wilkie P, Wang M, et al. Patient reporting of suspected adverse drug reactions: a review of published literature and international experience. Br J Clin Pharmacol 2007; 63 (2): 148-56 (Pubitemid 46072099)
21. Knezevic MZ, Bivolarevic IC, Peric TS, et al. Using Facebook to increase spontaneous reporting of adverse drug reactions. Drug Saf 2011; 34 (4): 351-2
22. Avery A, Anderson C, Bond CM, et al. Evaluation of patient reporting of adverse drug reactions to the UK 'Yellow Card Scheme': literature review, descriptive and qualitative analyses, and questionnaire surveys. Health Technol Assess 2011; 15 (20): 1-234, iii-iv
23. Hardey M. 'The story of my illness': personal descriptions of illness on the internet. Health 2002; 6 (1): 31-46
24. Pennebaker JW, Seagal JD. Forming a story: the health benefits of Narrative. J Clin Psychol 1999; 55 (10): 1243-54 (Pubitemid 29451490)
25. Pennebaker JW. Writing about emotional experiences as a therapeutic process. Psychol Sci 1997; 8 (3): 162-6
26. Baikie KA, Wilhelm K. Emotional and physical health benefits of expressive writing. Adv Psychiatr Treat 2005; 11: 338-46 (Pubitemid 41283094)
27. Goyder C, McPherson A, Glasziou P. Diagnosis in general practice: self-diagnosis. BMJ 2009; 339: b4418
28. Campbell R. Consumer informatics: elderly persons and the Internet. Perspect Health Inf Manag 2005; 2: 2
29. Bastuji-Garin S, Fouchard N, Bertocchi M, et al. SCORTEN: A severity-of-illness score for toxic epidermal necrolysis. J Invest Dermatol 2000; 115: 149-53 (Pubitemid 30637181)