BOND study explores cost, science of sleep disorder


Common is the adage: One thing leads to another. And with respect to the condition of narcolepsy, according to the Burden of Narcolepsy Disease (BOND) study, few other sayings could hold more accurate.

Conducted with the use of medical and expense records from some 9,312 narcoleptic patients in the United States, the BOND study explored the comorbidity rate associated with narcolepsy; what researchers found left them shaken, not stirred.

Regarding psychiatric comorbidity, narcolepsy patients were found to also suffer from depressive and anxiety disorders and to greater excess than those within the control group of approximately 46,559 individuals. Furthermore, all mental illness was found to be more prevalent in those with narcolepsy and psychiatric medication usage, office visits and costs related to mental illness were noted to be significantly higher in those with the condition as well.

While most of these results came with little surprise, the extent of the findings left researchers in awe.

“We knew that the narcolepsy population has an increased risk of comorbid conditions, such as sleep apnea, depression and other sleep disorders, mood disorders and anxiety conditions,” Jed Black, vice president of sleep medicine at Jazz Pharmaceuticals, consulting associate professor at Stanford University Medical Center, and lead author of the BOND study, told PhysBizTech. “So we expected there would be increased healthcare utilization based on that. What we didn’t expect was to see the increased utilization across all types of services no matter inpatient, hospitalization, etcetera.”

And it wasn’t just healthcare utilization ramping up for diagnosed patients — the degree of different conditions conjoining with narcolepsy was also far vaster than Black and company had anticipated.

“The other finding that I think was most surprising was the extent of comorbid conditions within the narcolepsy population that kind of went beyond what we had anticipated,” Black explained. “It made us wonder if we had some sort of systematic bias within the database. It’s a huge database — 50 million plus covered lives and we selected out the subpopulation that had 5 years of insurance coverage [either Medicare or private insurance] and within that group then identified the patients diagnosed with narcolepsy and matched them to a group that did not have diagnosed narcolepsy but was in that database. And across most diagnostic categories there was increased prevalence of comorbid conditions with narcolepsy compared with controls.”

Diagnosis issues as a result of narcolepsy’s chameleon-like symptoms is one perpetrator of increased costs and distress in both patients and the physicians desperate to help them.

“It is difficult because so many things could cause sleepiness,” Black noted. “All of our neurodegenerative conditions such as Parkinson’s Disease, MS, a lot of those folks are sleepy or fatigued. Sleep apnea of course causes a lot of sleepiness and that’s a very common condition. The autoimmune conditions usually have a lot of fatigue and sleepiness. So this is a real difficult thing for the primary care doc to be adequately educated on any sleeping condition, to do a very sophisticated differential diagnosis and pick out the right one.”

Black continue: “It’s an incredibly important question to ask: What can we do to help primary care docs to diagnose the condition. My dream is that at some point we have a blood test. So if somebody comes in to see the primary care physician and they’re so profoundly sleepy, a blood test could be done to rule out narcolepsy or to confirm it. But we don’t have that.”

As a possible means to ameliorate such a burden, Black suggested more education for primary care physicians and more encouragement given by PCPs to patients to seek out sleep specialists who can run rapid eye movement tests and other clinical evaluations to all but confirm a narcolepsy presence.

Find graphic excerpts and more about the BOND study here.