ArticleDrug safety2012
Internet accounts of serious adverse drug reactions: a study of experiences of Stevens-Johnson syndrome and toxic epidermal necrolysis.
Article in Drug safety, 2012. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 19 papers, 2 of them syntheses that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
19 citing papers in PubMed, 2 syntheses or guidelines pooled it, 36 citations in OpenAlex.
- Pooled it
- Systematic review on the prevalence, frequency and comparative value of adverse events data in social media.British journal of clinical pharmacology · 2015Pooled it
- Article
- Identifying and managing adverse drug reactions: Qualitative analysis of patient reports to the UK yellow card scheme.British journal of clinical pharmacology · 2022Article
- The psychological impact of Stevens-Johnson syndrome and toxic epidermal necrolysis on patients' lives: a Critically Appraised Topic.The British journal of dermatology · 2020Article
- Use of Social Media for Pharmacovigilance Activities: Key Findings and Recommendations from the Vigi4Med Project.Drug safety · 2020Article
- Clinical and pathogenic aspects of the severe cutaneous adverse reaction epidermal necrolysis (EN).Journal of the European Academy of Dermatology and Venereology : JEADV · 2020Review
- Long-term outcomes of amniotic membrane treatment in acute Stevens-Johnson syndrome/toxic epidermal necrolysis.The ocular surface · 2020Article
- Multidisciplinary care in Stevens-Johnson syndrome.Therapeutic advances in chronic disease · 2020Review
- 'Engagement' of patients and healthcare professionals in regulatory pharmacovigilance: establishing a conceptual and methodological framework.European journal of clinical pharmacology · 2019Review
- Review
- Clinical Relation Extraction Toward Drug Safety Surveillance Using Electronic Health Record Narratives: Classical Learning Versus Deep Learning.JMIR public health and surveillance · 2018Article
- Descriptions of Adverse Drug Reactions Are Less Informative in Forums Than in the French Pharmacovigilance Database but Provide More Unexpected Reactions.Frontiers in pharmacology · 2018Article
- Lessons Learned Designing and Using an Online Discussion Forum for Care Coordinators in Primary Care.Qualitative health research · 2016Article
- Evaluating Social Media Networks in Medicines Safety Surveillance: Two Case Studies.Drug safety · 2015Article
- Adverse Drug Reaction Identification and Extraction in Social Media: A Scoping Review.Journal of medical Internet research · 2015Article
- The ISoP CommSIG for Improving Medicinal Product Risk Communication: A New Special Interest Group of the International Society of Pharmacovigilance.Drug safety · 2015Article
- Stevens-Johnson Syndrome and toxic epidermal necrolysis: improving the support to victims.Drug safety · 2013Article
- SJS/TEN 2017: Building Multidisciplinary Networks to Drive Science and Translation.The journal of allergy and clinical immunology. In practiceReview
Corrections and comments
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Authors and funding
4 authors at 3 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundLife-threatening adverse drug reactions (ADRs) such as Stevens-Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) continue to affect patients' lives long after the event. Survivors and their relatives rely heavily on Internet sources for support and advice, but narratives of their experiences posted on patient websites have not been explored previously.
objectivesThe aim of the study was to illuminate patient experience by analysing Internet narratives of drug-induced SJS and TEN and considering the reasons for postings on patient websites, and the concerns they reflect. We also aimed to compare these experiences with a previous study of survivors of SJS and TEN conducted by face-to-face interview.
methodsWe searched for unsolicited personal narratives or descriptions of drug-induced SJS and TEN posted on the Internet between February 2009 and June 2010, and analysed them using a thematic qualitative approach.
resultsWe analysed 208 Internet descriptions. Motivation for posting on the Internet included a desire to share experiences and to seek advice from others. Patients and their relatives expressed concern that the ADR may be hereditary, worries about effects on fertility and a fear of recurrence. They also wished to increase awareness of the potential harms from medicines and to inform others of the suspected cause of the ADR.
conclusionIndividuals experiencing SJS or TEN had many unanswered questions and concerns long after the event. Our findings could guide health professionals in the management of survivors of the ADR, and in communicating more effectively with patients and their relatives. Internet forum postings of patient experiences of ADRs provide insight into patient concerns and supplement findings from detailed face-to-face interviews.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.