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Idiopathic Hypersomnia Campaign Seeks to Spread Awareness, Empower Patients


A recently launched campaign by Jazz Pharmaceuticals and the Hypersomnia Foundation spotlights a lack of knowledge on idiopathic hypersomnia, as well as how care teams can optimally screen for symptoms and care for patients with the debilitating sleep disorder.

Characterized by chronic excessive daytime sleepiness, symptoms of idiopathic hypersomnia (IH) can often overlap with other more common sleep disorders such as narcolepsy. However, unlike narcolepsy, IH has no FDA-approved therapies, with patients often struggling to manage their social, school, and occupational tasks.

“Once I was diagnosed with IH I thought I would be able to stay in college, but eventually I had to drop out since I could not make it to classes and stay awake. It’s also hard for me to maintain a job due to my sleep schedule. Thankfully I do have a part-time job that accommodates my schedule, but even that is a challenge,” said Meghan M., a 26-year-old patient with IH, in an email exchange with The American Journal of Managed Care® (AJMC®).

Through a recently launched campaign by Jazz Pharmaceuticals and the Hypersomnia Foundation, called I Have IH, both organizations seek to foster better understanding of the challenges prominent in patient care, as well as spread awareness of this commonly misunderstood condition.

In a poll of 305 health care providers from February 5 to 12, 2021, including self-identified sleep specialists (n = 4), neurologists (n = 67), psychiatrists (n = 82), pulmonologists (n = 90), and primary care physicians (n = 62), more than 90% of respondents said that physicians need more education about the sleep disorder.

Notably, more than half (57%) said they had personally misdiagnosed IH, with 86% saying that patients are often misdiagnosed with depression and/or anxiety.

“The sleepiness and fatigue can be mistaken for psychiatric disturbance such as depression, personality disorder, or attention problems. The symptom of sleepiness is often poorly quantified,” said Richard K. Bogan, MD, FCCP, FAASM, associate clinical professor at the University of South Carolina School of Medicine, in an email exchange with AJMC®.

As Bogan notes, patients with IH can often live with the condition for years before receiving an accurate diagnosis, which significantly impacts patient outcomes.

Based on survey results, 39% of respondents reported that they believe it can take between 2 to 5 years to receive an accurate diagnosis of IH. However, evidence shows a further delay in diagnosis of between 10 to 15 years.

This experience was shared by Meghan, who had to wait 5 years before receiving her IH diagnosis after first experiencing symptoms in high school when she couldn’t stay awake in class.

Noting that she had been dismissed or told it was psychiatric issues when visiting doctors, her symptoms grew worse after enrolling in college, causing her to eventually drop out.

“I didn’t explore sleep disorders until my psychiatrist in college suggested that I may have narcolepsy after I had a hallucination episode in class. I had some labs done and found out that it may not be narcolepsy, but instead hypersomnia. I was referred for some additional sleep studies and was finally told I had IH,” said Meghan.

With 95% of health care providers in the survey saying that patients living with IH are frustrated with their current disease management, Bogan provided tips on diagnosis and best practices in managing the condition.

As a distinct and core symptom of IH, severe sleep inertia can last up to 4 hours after waking in patients, says Bogan, which is debilitating as it often requires the assistance of another person to wake them up.

“Physicians should keep in mind that sleepiness can manifest as mood changes, attention problems, fatigue, or central nervous system (CNS) executive function abnormalities, especially speed of processing (brain fog),” added Bogan.

To recognize and quantify sleepiness, Bogan noted that patient-reported outcome measures such as the Epworth Sleepiness Scale can be used to help enhance recognition of disorders of central hypersomnolence such as IH.

“Having patients with fatigue, psychiatric complaints, CNS executive dysfunction, or attention problems can enhance recognition.”

Beyond nonpharmacologic strategies to manage IH, there is some promise for patients as Jazz Pharmaceuticals’ FDA approved therapy for narcolepsy, Xywav (calcium, magnesium, potassium, and sodium oxybates) oral solution, recently showed positive phase 3 results in adult patients with IH.

If approved by the FDA, Jazz Pharmaceuticals plans to bring Xywav to market for patients with IH in the fourth quarter of 2021.

Until then, increasing comprehension and spreading awareness of the debilitating condition could be invaluable in providing patients with timely care and support from both physicians and the general public.

“I struggle to do daily tasks by myself and it feels impossible to maintain a social life,” says Meghan. “Although my IH changed life as I knew it and continues to be an everyday struggle, I refuse to let it define me.”

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