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Sleep, Pain, and Fatigue in Ehlers-Danlos Syndrome
Ehlers-Danlos National Foundation
Learning Conference
August 9, 2012
Susan Cordes, MS, CGC
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Online Survey
• The purpose was to characterize poor sleep, pain, fatigue, and RLS and determine if there are correlations to age and/or gender in patients self-identified with EDS.
• Used SurveyMonkey posted on the EDNF website with consent of local IRB.
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Survey
• Demographics• Questionnaires
– Pittsburg Sleep Quality Index (PSQI)– Brief Pain Inventory (BPI)– Brief Fatigue Inventory (BFI)– International Restless Legs Syndrome Study
Group Rating Scale (RLS-RS)
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Results
• Responses– Total: 1,252– Completed: 1, 054 (84.2%)– Analyzed 888
• Demographics– Age
• Range 14-83• Average 35.7
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Demographics: gender
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Results: PSQI
• Measures:– Subjective sleep quality– Sleep latency– Sleep duration– Habitual sleep efficiency– Sleep disturbances– Use of sleep medications– Daytime dysfunction
• Ratings were 0-3
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Sleep
• Significant decrease in overall sleep quality as compared to controls– Mean rated it fairly bad (1.87 v. 0.35)
• Mild degree of insomnia compared to controls– Avg. time 30-60 minutes
• Less amount of time spent sleeping than controls– Reduced sleep efficiency (1.71 v. 0.10)– 8.5 hours in bed with 6 hours of actual sleep– Frequent nighttime awakenings (more than 3 times per week)
• Including feeling hot and having pain
• Often take sleep aids (1.52 v. 0.04)• Difficulty staying awake and energy (enthusiasm) levels
(2.06 v. 0.35)
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Sleep
• Significant correlation to BFI– i.e. reduced sleep quality correlated with worse
fatigue
• Did not correlate with pain severity or pain intensity from the PSQI– Pain may only be a contributing factor to sleep
issues in EDS
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Results: BPI
• BPI reports two scores: pain severity and pain interference
• Nearly all patients reported pain (98%)• Respondents reported 12 sites on average
with persistent/recurring pain– Most common were jaw, neck, back (especially
lower), shoulder, wrist, hand, digits, hip, knee, ankle, and feet
• Pain ranged from a 3-7 (on a scale from 0-10)• Average pain relief from medications 27%
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Pain
• Significantly more pain severity than compared to controls
• Significant pain interference affecting general activity, mood, work, relationships, sleep, and enjoyment of life
• However, did not correlate with sleep quality or overall fatigue
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Results: BFI
• 92% reported that they are unusually tired/fatigue in past week
• Average, least and worst fatigue levels during the past 24 hours ranged from 5-8 on a 10 point scale where 0 was no fatigue and 10 “as bad as you can imagine”
• Fatigue significantly interfered with general activities, mood, walking ability, work, relationships, and enjoyment of life
• Global score (6.11 v. 3.04 (sleep disorders) v. 4.04 (cancer))
• Correlated with decreased sleep quality
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Results: RLS-RS
• 21% self-report diagnosis of restless legs syndrome– Symptoms occur on average 4-5x per week– Reported to have a mild impact on sleep
• 7% diagnosed with PLM• PSQI: legs twitching or jerking a few times a
week while asleep (assessed by bed partner)• Over all respondents, averaged moderate
symptoms
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Conclusions
• Pain common, severe, involves multiple sites, and interferes with daily living
• Sleep disturbance common but frequent awakenings is more common than insomnia
• Sleep disturbance related to generalized fatigue but may not be the only factor
• Pain is somewhat related to the sleep disturbance but so are other factors
• Restless leg syndrome common but has only modest effect on sleep disturbance
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Acknowledgements
• Brad Tinkle, MD, PhD• Sabrina Neeley, PhD, MPH• All the participants!