Welcome to the new Easing Anxiety blog series, "What We Learned from the Benzo Survey."
Now that we have published the 3rd and final paper on the Benzodiazepine Survey of 2018/2019, we wanted to share some of the findings and data that may not have been included in the three published papers. There was a lot here, and it would be a shame not to make it available to the public.
As we progress through this series, we will discuss demographics, types of medication, taper, dosage, symptoms, and adverse life effects. Each post will be relatively short, covering only one or two analyses. At the bottom of each post, we will include details and links to learn more about the survey if you so choose. Despite the inherent complexity of data analysis and statistics, these posts will be written with the general audience in mind.
In the first few posts, we will start out with the basics. There are three key demographics of the study: age, gender, and country.
Let's start with age...
The age distribution of the survey respondents was not unexpected.
Even though this was an online survey, which typically skews younger, the average age of affected individuals in the benzodiazepine community is older. Over half of all respondents in this survey were over the age of 50.
There are some reasons for this. First off, benzodiazepines are more heavily prescribed in older populations. Reasons for this are varied. And second, many individuals do not recognize or exhibit tolerance symptoms until years, even decades, after starting the drug. In fact, a significant percentage never exhibit tolerance at all during use and do not face these hurdles until withdrawal. This may explain, in part, why the average age of someone seeking support for benzodiazepine withdrawal trends older.
According to national estimates in a 2018 study, 8.7% of older Americans greater than age 65 were prescribed BZD [benzodiazepines] within the past year.
Given the known adverse effects of this drug class [benzodiazepines], particularly in the elderly, efforts should be aimed at a rigorous assessment of the true need for a benzodiazepine, along with the implementation of deprescribing practices for existing benzodiazepine users. — Gress et al (2020)
Unfortunately, the age group most frequently overlooked in modern society is also the one that is most affected by the complications of benzodiazepines and Z-drugs. The overprescribing of these drugs for older adults is a significant problem and is one of the leading causes of falls and hip fractures, which increases the risk of mortality, poorer quality of life, and increased morbidity.
It could be helpful to track symptoms by age. Your age group currently is:
Donnelly K, Bracchi R, Hewitt J, Routledge PA, Carter B. Benzodiazepines, Z-drugs and the risk of hip fracture: A systematic review and meta-analysis. PLoS One. 2017 Apr 27;12(4):e0174730. doi: 10.1371/journal.pone.0174730. PMID: 28448593; PMCID: PMC5407557. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5407557/.
Gerlach LB, Wiechers IR, Maust DT. Prescription Benzodiazepine Use Among Older Adults: A Critical Review. Harv Rev Psychiatry. 2018 Sep/Oct;26(5):264-273. doi: 10.1097/HRP.0000000000000190. PMID: 30188338; PMCID: PMC6129989. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6129989/.
Gress T, Miller M, Meadows C 3rd, Neitch SM. Benzodiazepine Overuse in Elders: Defining the Problem and Potential Solutions. Cureus. 2020 Oct 19;12(10):e11042. doi: 10.7759/cureus.11042. PMID: 33214968; PMCID: PMC7673272. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7673272/.
Survey papers are listed below.
About the Benzodiazepine Survey
About the Research
The largest survey of its kind, "The Benzodiazepine Survey of 2018/2019" was created and administered by Jane Macoubrie, PhD and Christy Huff, MD. Over 1,600 individuals took the survey, resulting in 1,207 qualified respondents. The survey constituted 20 questions, including demographic inquires. Some of these questions had multiple sub-questions and/or allowed multiple answers.
The survey generated three published research papers in scientific journals (as noted below) between April 25, 2022 and June 29, 2023. The research team is still together working on new benzodiazepine-related research projects.
Special thanks to the Alliance for Benzodiazepine Best Practices for sponsoring and organizing this research.
PAPER 1 — April 25, 2022
Reid Finlayson AJ, Macoubrie J, Huff C, Foster DE, Martin PR. Experiences with benzodiazepine use, tapering, and discontinuation: an Internet survey. Therapeutic Advances in Psychopharmacology. 2022;12. doi:10.1177/20451253221082386. https://journals.sagepub.com/doi/full/10.1177/20451253221082386.
PAPER 2 — February 6, 2023
Huff C, Finlayson AJR, Foster DE, Martin PR. Enduring neurological sequelae of benzodiazepine use: an Internet survey. Therapeutic Advances in Psychopharmacology. 2023;13. doi:10.1177/20451253221145561. https://journals.sagepub.com/doi/10.1177/20451253221145561.
PAPER 3 — June 29, 2023
Ritvo AD, Foster DE, Huff C, Finlayson AJR, Silvernail B, et al. (2023) Long-term consequences of benzodiazepine-induced neurological dysfunction: A survey. PLOS ONE 18(6): e0285584. https://doi.org/10.1371/journal.pone.0285584.
Research Team / Authors (alphabetical)
A. J. Reid Finlayson, MD, MMHC — Vanderbilt University Medical Center
D E Foster — Benzodiazepine Action Work Group
Christy Huff, MD — Benzodiazepine Information Coalition
Peter R. Martin, MD, MSc — Vanderbilt University Medical Center
Alexis Ritvo, MD, MPH — University of Colorado Anschutz Medical Campus
Bernard Silvernail — The Alliance for Benzodiazepine Best Practices
The Alliance for Benzodiazepine Best Practices — Sponsoring Organization
Jane Macoubrie, Ph.D. — Survey originator
Jo Ann LeQuang — Medical Writer
This study has several limitations.
The study reported on ‘suicidal thoughts’, which can range from fleeting notions of self-harm to passive desperation, preparatory planning, and disinhibition. Suicidal thoughts may be underreported, even in an anonymous online survey, as respondents might hesitate or be embarrassed to report self-destructive thoughts.
There was no control group. Much of the survey dealt with symptoms presented in multiple-choice lists, and it is possible that patients may have been suggestible to the list presented, may not have correctly remembered past symptoms, or may incorrectly attribute certain symptoms or feelings to benzodiazepines.
We did not account for a nocebo effect.
The large number of write-in comments suggests that many respondents felt the survey did not allow them to fully describe the extent of their experiences and emotions.
Another limitation of our survey is that it recruited respondents from social media and online sources that deal with benzodiazepine use and withdrawal. Respondents were self-selected, forming a convenience sample that may not represent the population of benzodiazepine users as a whole because visitors may have sought sites such as these specifically because they have experienced problems. Moreover, those who use the Internet for health information tend to be younger, and those who join online support groups for medical conditions tend to be in generally worse health. Our results thus may not be generalizable to the population of all people taking benzodiazepines.
A medical statistician produced the initial results of this survey utilizing SAS Software. Subsequent data analysis was performed in greater detail by an experienced data scientist who imported the survey data into a custom SQL Server data model.
Customized queries were employed to obtain correlations among the data. In particular, this analysis examined conditions for which benzodiazepines were prescribed and compared them to symptoms and adverse life effects reported by patients who were tapering or had discontinued benzodiazepine use.
All analyses were delivered via a structured reporting process and validated against the original SAS reports. The survey was made available online through websites and internet benzodiazepine support groups and general health and wellness groups.
The data scientist mentioned above is D E Foster, who is also the author of this blog series and the founder of Easing Anxiety. D has been a member of the Benzodiazepine Survey Research Team since 2019, providing general benzodiazepine knowledge and lived-experience in addition to formal data analysis and reporting. Prior to his withdrawal from benzodiazepines, D worked as a database developer and data scientist for over 25 years.
For Informational Purposes Only
All information presented on Easing Anxiety is for informational purposes only, and should never be considered medical or health advice. Withdrawal, tapering, or any change in dosage of benzodiazepines or any other prescription drugs should only be done under the direct supervision of a licensed physician.
This article was written by a living, breathing, human person.
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