Sleep Disturbance and Common Interventions Used for Sleep Management in Individuals with Hypermobile Ehlers-Danlos Syndrome

Research Objectives: To investigate common problems associated with sleep disturbances in individuals with hypermobile Ehlers-Danlos Syndrome (hEDS) and interventions commonly utilized to facilitate sleep.

Design: Survey of individuals with hypermobile Ehlers-Danlos syndrome

Setting: Data set from a 2022 survey distributed worldwide through the Ehlers-Danlos Society website

Participants: 768 adult (18+ years) participants with hEDS

Interventions: Presence or absence of sleep disturbances; presence or absence of sleep deficits (under 7 hours per 24 hour period); presence or absence of anxiety; and the most common sleep disturbances reported and inventions utilized.

Main Outcome Measures: Survey data was collected on sociodemographic characteristics (e.g., age, sex, employment status), sleep disturbances (pain, body temperature regulation, insomnia, anxiety, etc.) and common interventions utilized (positioning, sleep routines, medications, etc.). The National Institutes of Health (NIH) Patient Reported Outcomes Measurement Information System (PROMIS) sleep scale was also used to compare individuals with hEDS to normative data. A measure of mental and physical health-related quality of life (HRQOL) from the SF-36 was also utilized.

Results: The majority of individuals with hEDS reported having problems with their sleep not being restful (92.2%). The majority of this population got less than the recommended number of hours of sleep (7) per night (66.4%). Pain was reported as interfering with sleep by 97.4% of subjects with 37.75% causing them to have trouble with sleep daily. The most common sleep interventions used by participants were maintaining a routine sleep schedule (64.6%), use of prescription (41.5%)and over the counter medications (35.0%), positioning, pillows, or wedges (20.1%), and room temperature (17.3%). Comparison of individuals with hEDS to PROMIS normative data found significantly worse sleep in this population (p < 0.01). Both mental and physical HRQOL were impacted by poor sleep (p < 0.01).

Conclusions: Individuals with hEDS had significant sleep disturbances due to pain, temperature regulation, and anxiety. Many participants use medications, sleep positioning, and sleep routines to combat these sleep difficulties. More research is needed to determine optimal interventions to improve the overall quality of sleep in individuals with hEDS.

Author(s) Disclosures: None