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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

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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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Acknowledgements

We thank Dr Jonathan Ives, Research Fellow at the Centre for the Study of Global Ethics at the University of Birmingham, for reviewing the research protocol and ethical aspects of the study, Professor Jan Oyebode and Dr Michael Larkin from the Department of Psychology at the University of Birmingham for reviewing the manuscript, and all our interviewees for giving up their time for this study.

This study was supported by the University of Birmingham. Robin Ferner has occasionally provided expert testimony on adverse drug reactions, including Stevens-Johnson Syndrome. The other authors have no conflicts of interest to declare.

The study was approved by the West Midlands Research Ethics Committee. Each participant gave written informed consent prior to participating in the study.

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Authors and Affiliations

  1. Department of Clinical Pharmacology, School of Clinical and Experimental Medicine, University of Birmingham, Birmingham, UK

    Tehreem F. Butt (Lecturer and Specialist Registrar) & Robin E. Ferner

  2. Aston Pharmacy School, Aston University, Aston Triangle, Birmingham, UK

    Anthony R. Cox

  3. Department of Dermatology, University Hospitals Birmingham NHS Trust, Birmingham, UK

    Helen Lewis

  4. West Midlands Centre for Adverse Drug Reactions, City Hospital, Birmingham, UK

    Anthony R. Cox & Robin E. Ferner

Authors
  1. Tehreem F. Butt
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  2. Anthony R. Cox
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  3. Helen Lewis
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  4. Robin E. Ferner
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Correspondence to Tehreem F. Butt.

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Butt, T.F., Cox, A.R., Lewis, H. et al. Patient Experiences of Serious Adverse Drug Reactions and Their Attitudes to Medicines. Drug-Safety 34, 319–328 (2011). https://doi.org/10.2165/11588460-000000000-00000

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  • DOI: https://doi.org/10.2165/11588460-000000000-00000

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