Use of prescription opioid and other drugs among a cohort of persons with Ehlers–Danlos syndrome: A retrospective study
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Against the backdrop of increased opioid prescribing in the United States and the associated high rate of side effects, dependence, and addiction, our study examined how opioids and other medications are being used among persons with Ehlers–Danlos syndrome (EDS). EDS is a set of heritable connective tissue disorders with high symptom burden, including chronic pain. Prescription medication use among persons with EDS was compared to a cohort of matched controls using 10 years of administrative claims data from a large database of privately insured patients (2005–2014). Our dataset included 4,294 persons with EDS, ages 5–62 years old. In both adults and children, we found that the percentage of persons with a prescription drug claim was higher in the EDS cohort for all prescription drug classes examined. Among children, opioid use was double in the EDS cohort compared to the control group (27.5% vs. 13.5%); in adults, it was nearly double in EDS patients (62% vs. 34.1%). Among persons who were prescribed opioids, those with EDS had higher cumulative dosages over a 2‐year time period versus controls. Our study aids in understanding opioid and prescription drug use patterns in a vulnerable population with high symptom burden and chronic pain that is often severe.
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In HSD/hEDS, rapid dose escalation of opioids, alongside the co-prescription of sedative drugs such as benzodiazepines, is commonly seen.
“This is of great concern in HSD/hEDS where rapid dose escalation of opioids, alongside the co-prescription of sedative drugs such as benzodiazepines, is commonly seen. 25”
From Rome IV Functional Gastrointestinal Disorders and Health Impairment in Subjects With Hypermobility Spectrum Disorders or Hypermobile Ehlers-Danlos Syndrome (2021) · cites this paper as [25]
A recent large retrospective evaluation of prescription medication use amongst adults with EDS noted the vast majority to be taking analgesics, of which opioids accounted for almost two-thirds.
“A recent large retrospective evaluation of prescription medication use amongst adults with EDS noted the vast majority to be taking analgesics, of which opioids accounted for almost two-thirds. 25”
From Rome IV Functional Gastrointestinal Disorders and Health Impairment in Subjects With Hypermobility Spectrum Disorders or Hypermobile Ehlers-Danlos Syndrome (2021) · cites this paper as [25]
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References 33 · Cited by 26
Research works printed but not linked: 19
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- Authors
- Schubart, J. R., Schilling, A., Schaefer, E., Bascom, R., & Francomano, C.
- Affiliations
- Pennsylvania State University (US)
- Department of Public Health Sciences The Pennsylvania State University, College of Medicine Hershey Pennsylvania
- Greater Baltimore Medical Center (US)
- Corresponding author
- Schubart, Jane R.
- Venue
- American Journal of Medical Genetics Part A
- Publisher
- Wiley
- Published
- 2019-01-09
- Volume
- 179
- Issue
- 3
- Pages
- 397-403
- ISSN
- 1552-4825 (ISSN-L)
- 1552-4833
- OpenAlex
- W2911205875
- Cited by
- 26
- References
- 33
- Citations by year
- 2026: 3 · 2025: 5 · 2024: 3 · 2023: 1 · 2022: 3 · 2021: 6 · 2020: 4 · 2019: 1
- FWCI
- 3.22
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Locations
- American Journal of Medical Genetics Part A (publishedVersion)
- PubMed (publishedVersion)
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Opioid Use Disorder Treatment
- Life Sciences › Biochemistry, Genetics and Molecular Biology › Genetics › Connective tissue disorders research
- Health Sciences › Medicine › Anesthesiology and Pain Medicine › Pain Management and Opioid Use
- Keywords
- Ehlers-Danlos syndrome, prescription opioids, prescription drug use, chronic pain, connective tissue diseases, opioid dosing, children, adults
- MeSH terms
- Adolescent, Adult, Analgesics, Opioid, Child, Child, Preschool, Ehlers-Danlos Syndrome, Female, Humans, Male, Middle Aged, Pain Measurement, Drug Prescriptions, Retrospective Studies, Cohort Studies, Young Adult, Chronic Pain
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