Results of the Burden of Narcolepsy Disease (BOND) Study: Guest Post by Dr. Mark Patterson
REM Runner’s Note: I asked my good friend and fellow narcolepsy advocate, Dr. Mark Patterson, to share some important information from the APSS SLEEP 2013 meeting. Thank you so much, Dr. Patterson, for this thoughtful well-written post.
Dr. Mark Patterson’s Guest Post:
I had the good fortune of attending the 27th Annual Meeting of the Associated Professional Sleep Societies (SLEEP 2013) in Baltimore. The conference was attended by over 6,000 sleep specialists from around the world, with presentations by the leading researchers and clinicians. Additionally, over 1,000 posters were displayed over a three day period. The most recent research data regarding narcolepsy was the subject of many of these posters.
A series of posters dealt with the Burden of Narcolepsy Disease (BOND) Study. This study was funded by Jazz Pharmaceuticals, the maker of Xyrem. This was the first comprehensive national review of the impact of narcolepsy in the United States. The basis of the study was a review of the medical charts of 55,871 patients. Of these, 9,312 carried the diagnosis of narcolepsy; 20.3% of these patients also had cataplexy. For the control patients, they matched each of the narcolepsy patients with five patients of similar age, sex, region, and insurance plan. They only included patients 18 years of age or older; the mean age was 46.1 years with a range from 18 to 93.
The study examined the healthcare costs and utilization of those with narcolepsy as well as the rate of comorbidity (other medical conditions). Since the data was obtained from the diagnostic codes on the medical charts, there was no opportunity for the researchers to ask the patients about the impact of the other conditions on their lives. Additionally, there was no speculation about the possible connections between narcolepsy and these conditions.
Surprisingly, the results showed that the presence or absence of cataplexy had no significant impact on the results. As such, I will use the term narcolepsy to describe those both with and without cataplexy. With the exception of conditions related to pregnancy and childbirth, those with narcolepsy had a significantly increased prevalence of all of the conditions examined.
The difference was especially notable with sleep apnea, restless leg syndrome, depressive disorders, headaches/migraines, and anxiety disorders. The study also demonstrated that those with narcolepsy had increased utilization of medical care, including visits to physician offices, emergency rooms, and inpatient stays. On average, those with narcolepsy had annual healthcare service costs of $8,346 vs. $4,147 for control patients. Similarly, prescription drug costs were $3,356 for narcolepsy patients vs. $1,114 for the controls. Narcolepsy patients also used an average of 7.6 disability days per year compared for 3 days for other patients.
As depressing as this data may be, there is good news. It was readily apparent at the meeting that narcolepsy is coming into its own in the arena of sleep medicine. As noted above, numerous presentations and posters dealt with narcolepsy, both from the very basic scientific level to aspects of practical treatments. New medications are currently in trials and appear promising. At one dinner meeting alone, over 550 participants listened to and asked questions of four of the leading narcolepsy specialists in the world. As new advances continue to be made, I fully expect exciting things to come in the world of narcolepsy!
About Dr. Patterson:
Dr. Patterson is a general pediatrician in Roanoke, Virginia who has been actively involved in the narcolepsy community since 2004. He is currently on the Board of Trustees of the Narcolepsy Network. He is married and has one daughter.
View PDFs of Study Posters:
- Healthcare Utilization and Costs in Narcolepsy: Findings from the Burden of Narcolepsy Disease (BOND) Study of 9,312 Patients in the United States
- Burden of Illness and Comorbidity in Narcolepsy with Cataplexy: Findings from the Burden of Narcolepsy Disease (BOND) Study in the United States
- High Rates of Medical Comorbidity in Narcolepsy: Findings from the Burden of Narcolepsy Disease (BOND) Study of 9,312 Patients in the United States
- High Rates of Psychiatric Comorbidity in Narcolepsy: Findings from the Burden of Narcolepsy Disease (BOND) Study of 9,312 Patients in the United States
Great write-up here, Dr. Patterson. So much useful information. Thanks for taking the time to guest post on Julie’s blog!
Thank you, Alex for reading this post and commenting! I agree, great write-up, Dr. Patterson!
Thanks so much Alex and Julie. I am always honored to have the opportunity to post on Julie’s influential blog. In the world of narcolepsy, education is critical!
I missed the meeting this year after attending for a few years. Thank you Mark for the post above. Interesting statistics and much to think about as I enter this next stage of my life, being a grandparent and a PWN. Education is so important.