Literature DB >> 21417504

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.

Tehreem F Butt1, Anthony R Cox, Helen Lewis, Robin E Ferner.   

Abstract

BACKGROUND: Adverse drug reactions (ADRs) cause significant morbidity and mortality and account for around 6.5% of hospital admissions. Patient experiences of serious ADRs and their long-term impact on patients' lives, including their influence on current attitudes towards medicines, have not been previously explored.
OBJECTIVE: The aim of the study was to explore the experiences, beliefs, and attitudes of survivors of serious ADRs, using drug-induced Stevens-Johnson syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) as a paradigm.
METHODS: A retrospective, qualitative study was undertaken using detailed semi-structured interviews. Fourteen adult survivors of SJS and TEN, admitted to two teaching hospitals in the UK, one the location of a tertiary burns centre, were interviewed. Interview transcripts were independently analysed by three different researchers and themes emerging from the text identified.
RESULTS: All 14 patients were aware that their condition was drug induced, and all but one knew the specific drug(s) implicated. Several expressed surprise at the perceived lack of awareness of the ADR amongst healthcare professionals, and described how the ADR was mistaken for another condition. Survivors believed that causes of the ADR included (i) being given too high a dose of the drug; (ii) medical staff ignoring existing allergies; and (iii) failure to monitor blood tests. Only two believed that the reaction was unavoidable. Those who believed that the condition could have been avoided had less trust in healthcare professionals. The ADR had a persisting impact on their current lives physically and psychologically. Many now avoided medicines altogether and were fearful of becoming ill enough to need them.
CONCLUSIONS: Life-threatening ADRs continued to affect patients' lives long after the event. Patients' beliefs regarding the cause of the ADR differed, and may have influenced their trust in healthcare professionals and medicines. We propose that clear communication during the acute phase of a serious ADR may therefore be important.

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Year:  2011        PMID: 21417504     DOI: 10.2165/11588460-000000000-00000

Source DB:  PubMed          Journal:  Drug Saf        ISSN: 0114-5916            Impact factor:   5.606


  12 in total

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Review 2.  Toxic epidermal necrolysis: current evidence, practical management and future directions.

Authors:  T A Chave; N J Mortimer; M J Sladden; A P Hall; P E Hutchinson
Journal:  Br J Dermatol       Date:  2005-08       Impact factor: 9.302

3.  Who talks? The social psychology of illness support groups.

Authors:  K P Davison; J W Pennebaker; S S Dickerson
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4.  Burn center care for patients with toxic epidermal necrolysis.

Authors:  J J Kelemen; W G Cioffi; W F McManus; A D Mason; B A Pruitt
Journal:  J Am Coll Surg       Date:  1995-03       Impact factor: 6.113

5.  Medication use and the risk of Stevens-Johnson syndrome or toxic epidermal necrolysis.

Authors:  J C Roujeau; J P Kelly; L Naldi; B Rzany; R S Stern; T Anderson; A Auquier; S Bastuji-Garin; O Correia; F Locati
Journal:  N Engl J Med       Date:  1995-12-14       Impact factor: 91.245

Review 6.  Toxic epidermal necrolysis and Stevens Johnson syndrome: our current understanding.

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Journal:  Allergol Int       Date:  2006-03       Impact factor: 5.836

7.  How the internet affects patients' experience of cancer: a qualitative study.

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8.  Post-traumatic stress disorder after critical illness requiring general intensive care.

Authors:  Brian H Cuthbertson; Alastair Hull; Mary Strachan; Judith Scott
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9.  Adverse drug reactions as cause of admission to hospital: prospective analysis of 18 820 patients.

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10.  Clinical classification of cases of toxic epidermal necrolysis, Stevens-Johnson syndrome, and erythema multiforme.

Authors:  S Bastuji-Garin; B Rzany; R S Stern; N H Shear; L Naldi; J C Roujeau
Journal:  Arch Dermatol       Date:  1993-01
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  15 in total

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2.  The potential of the internet.

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3.  Adverse drug reactions: when the risk becomes a reality for patients.

Authors:  Anthony R Cox; Tehreem F Butt
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4.  Internet accounts of serious adverse drug reactions: a study of experiences of Stevens-Johnson syndrome and toxic epidermal necrolysis.

Authors:  Tehreem F Butt; Anthony R Cox; Jan R Oyebode; Robin E Ferner
Journal:  Drug Saf       Date:  2012-12-01       Impact factor: 5.606

5.  Long-term outcomes of amniotic membrane treatment in acute Stevens-Johnson syndrome/toxic epidermal necrolysis.

Authors:  Swapna S Shanbhag; Leangelo Hall; James Chodosh; Hajirah N Saeed
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6.  A qualitative study to explore how patients identify and assess symptoms as adverse drug reactions.

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Review 7.  SJS/TEN 2017: Building Multidisciplinary Networks to Drive Science and Translation.

Authors:  Katie D White; Riichiro Abe; Michael Ardern-Jones; Thomas Beachkofsky; Charles Bouchard; Bruce Carleton; James Chodosh; Ricardo Cibotti; Robert Davis; Joshua C Denny; Roni P Dodiuk-Gad; Elizabeth N Ergen; Jennifer L Goldman; James H Holmes; Shuen-Iu Hung; Mario E Lacouture; Rannakoe J Lehloenya; Simon Mallal; Teri A Manolio; Robert G Micheletti; Caroline M Mitchell; Maja Mockenhaupt; David A Ostrov; Rebecca Pavlos; Munir Pirmohamed; Elena Pope; Alec Redwood; Misha Rosenbach; Michael D Rosenblum; Jean-Claude Roujeau; Arturo P Saavedra; Hajirah N Saeed; Jeffery P Struewing; Hirohiko Sueki; Chonlaphat Sukasem; Cynthia Sung; Jason A Trubiano; Jessica Weintraub; Lisa M Wheatley; Kristina B Williams; Brandon Worley; Wen-Hung Chung; Neil H Shear; Elizabeth J Phillips
Journal:  J Allergy Clin Immunol Pract       Date:  2018 Jan - Feb

Review 8.  Current Perspectives on Stevens-Johnson Syndrome and Toxic Epidermal Necrolysis.

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9.  Knowledge and attitudes of HIV-infected patients on antiretroviral therapy regarding adverse drug reactions (ADRs) in selected hospitals in Nigeria.

Authors:  Kenneth Anene Agu; Azuka Cyriacus Oparah; Uche M Ochei
Journal:  Perspect Clin Res       Date:  2012-07

10.  Experiences from consumer reports on psychiatric adverse drug reactions with antidepressant medication: a qualitative study of reports to a consumer association.

Authors:  Andreas Vilhelmsson; Tommy Svensson; Anna Meeuwisse; Anders Carlsten
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