The benzodiazepine experience survey was designed by Dr. Jane Macoubrie, a professor of communications and member of BIC’s general advisory board, and Dr. Christy Huff, director of Benzodiazepine Information Coalition, who both have lived experience with benzodiazepine harm. The survey was available online in 2018 and assessed the experiences of those on benzodiazepines, in the cessation process, or post-cessation. Respondents (n=1207) were asked about their demographics, taper status, symptoms and life impact due to benzodiazepines.
- Many patients experience a range of protracted and severe symptoms, even years after benzodiazepines were completely discontinued.
- Life effects were numerous, with over 80% experiencing problems with work, recreation and relationships.
- Suicidal ideation was reported by 54% of respondents, a concerning statistic worthy of further investigation.
- About a third reported new seasonal and/or food allergies that occured only after benzodiazepine use.
- The survey also received numerous write-in comments, a selection of which are published in the paper.
- The paper concludes that greater awareness is needed for both prescribers and patients about the potential for a difficult withdrawal from benzodiazepines.
Statistical analysis was performed by D Foster, who also has benzodiazepine lived experience and is the author of Benzo Free. In addition to the three authors with lived experience, two Vanderbilt psychiatrists, Drs. Reid Finlayson and Peter Martin, provided their expertise in constructing the paper, while Bernard Silvernail led the research team meetings. Medical writing was performed by JoAnn Lequang, with funding from the Alliance for Benzodiazepine Best Practices.This is the first of several planned papers reporting on the survey results.