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. Butt, Anthony R. Cox, Helen Lewis, Robin E. Ferner

Research output: Contribution to journalArticle

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.

Original languageEnglish
Pages (from-to)319-328
Number of pages10
JournalDrug Safety
Volume34
Issue number4
DOIs
Publication statusPublished - Apr 2011

Fingerprint

Stevens-Johnson Syndrome
Poisons
Drug-Related Side Effects and Adverse Reactions
Medicine
Survivors
Pharmaceutical Preparations
Delivery of Health Care
Interviews
Burn Units
Medical Staff
Hematologic Tests
Allergies
Teaching Hospitals
Hypersensitivity
Retrospective Studies
Communication
Research Personnel
Morbidity

Keywords

  • adverse-drug-reactions
  • drug-hypersensitivity
  • post-traumatic-stress- disorders
  • questionnaires
  • skin-disorders, drug-induced
  • Stevens-Johnson-syndrome
  • toxic-epidermal-necrolysis.

Cite this

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title = "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",
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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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. / Butt, Tehreem F.; Cox, Anthony R.; Lewis, Helen; Ferner, Robin E.

In: Drug Safety, Vol. 34, No. 4, 04.2011, p. 319-328.

Research output: Contribution to journalArticle

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T1 - Patient experiences of serious adverse drug reactions and their attitudes to medicines

T2 - a qualitative study of survivors of Stevens-Johnson syndrome and toxic epidermal necrolysis in the UK

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