Bridging the Gap: How Online Patient Discussions Can Transform Narcolepsy Care

In this golden age of information, we have facts, figures and advice literally at our fingertips. Yet with such ease of accessibility comes challenges – especially in healthcare. Patients, previously solely reliant on clinicians for diagnosis, treatment and care, can now find pages of information, research and peer-to-peer support online. But is this access to information helpful or misleading?

Consider people living with narcolepsy, a challenging, chronic neurological disorder in which the brain can’t regulate sleep-wake cycles. While the cardinal symptom of narcolepsy is excessive daytime sleepiness (EDS), a constellation of other symptoms may also be present, some of which the patient may not connect to narcolepsy without additional guidance.

For example, people with narcolepsy type 1 experience cataplexy (a sudden loss of voluntary muscle control, typically in response to an emotion). Cataplexy can vary in severity and may manifest in unexpected ways, such as a buckling of the knees when laughing. Yet we often hear from patients who, despite being diagnosed with narcolepsy for several years, are surprised that this “odd thing” they’ve been experiencing is connected to their narcolepsy.  

In this real-life example and others, online patient discussions can transform narcolepsy care by offering insight in an instant, fostering connection, and providing a deeper understanding of the nuances of an individual’s condition. Internet forums can also serve as a reassuring platform where patients share their experiences, challenges and preferences, which often go unreported in clinical settings. While forums are often private by design to provide a safe space for transparent discussion, they may vary widely in content moderation, which could impact the reliability of shared clinical information or interpretations of new research. There is no doubt, however, that the sense of community and support in many of these forums helps people living with narcolepsy feel less alone.

Patient forums are also helpful for healthcare providers, as there are real-life elements in online interactions that can be observed and applied to clinical care, including better understanding of patients’ lexicon, how patients best understand information about their narcolepsy, what aspects of narcolepsy most impacts them, and how patients are discussing potential medications used to treat the condition.  

Social listening helps uncover what a community is organically discussing and can be the basis for structured surveys within the community. Ortiz et al. recently published the results of data from a survey of 110 MyNarcolepsyTeam members living with narcolepsy. Sleep clinicians will likely be unsurprised by the fact that 92% of respondents identified EDS and 79% noted fatigue among the most troubling symptoms. Other symptoms deemed most troubling, however, may be more unexpected: difficulty concentrating (64%); sleep disturbances (63%, inclusive of poor-quality sleep, disrupted nighttime sleep, fragmented sleep, insomnia and frequent awakenings); and mental health challenges, including feeling isolated (83%), depressed (81%) or anxious (80%).¹

Helping patients understand the 24/7 nature of narcolepsy symptoms is critical. It is also important to consider whether medications used to treat daytime EDS may cause insomnia or further contribute to the intrinsic sleep instability in narcolepsy.  

While nearly all medications for narcolepsy are taken in the daytime, oxybates are a class of medications taken prior to bedtime to treat narcolepsy. Historically, the only available formulation required a different kind of sleep disruption: chronic, middle-of-the-night awakening to take a second dose due to the short-acting, immediate release nature of the medication. Because this first-generation medication has been available for decades, many clinicians normalized the need for patients to wake up in the middle of the night to take the second dose. Given the lack of other options, this may have contributed to patient reticence to share candid perspectives about their treatment experience. Social listening, however, underscored patients’ struggles with this dosing schedule, which led to a recent structured survey of patients who were currently taking or had previously taken twice-nightly oxybate therapy or caregivers of a person with a narcolepsy diagnosis published by Picone et al. 

The survey revealed several significant challenges with twice-nightly oxybate therapy. Among 87 respondents, 75% reported either accidentally missing their second dose or taking it at the wrong time, leading to poor sleep quality, increased daytime sleepiness and decreased productivity. Additionally, close to one-third of respondents experienced injuries such as falls, bumps, bruises or black eyes after waking to take their second dose. Most compellingly, 76% agreed or strongly agreed that a once-nightly oxybate dose in a premeasured dosing packet would be safer than the twice-nightly formulations, while also providing more predictability in their treatment regimen.²

For providers, these insights underscore a critical shift in patient expectations and treatment paradigms in narcolepsy management that must be addressed.

Aligning with patient-expressed preferences for less frequent dosing,³ in 2023 LUMRYZ™ (sodium oxybate) for extended-release oral suspension became available to people with narcolepsy. LUMRYZ is the first and only US Food and Drug Administration approved once-at-bedtime sodium oxybate treatment for cataplexy or EDS in patients 7 years of age and older with narcolepsy. 

LUMRYZ has a boxed warning as a central nervous system depressant and for its potential for abuse and misuse. LUMRYZ is available only through a restricted program under a Risk Evaluation and Mitigation Strategy called the LUMRYZ REMS. Most common adverse reactions (incidence ≥ 5% and greater than placebo) reported for all doses of LUMRYZ combined were nausea, dizziness, bedwetting, headache and vomiting. Please see additional Important Safety Information, including Boxed Warning below.

Importantly, the FDA’s recognition of LUMRYZ’s once-nightly dosing as a clinically superior option to twice-nightly oxybates further underscores its value in patient care, as FDA recognized that “having to wake up to take a second dose is antithetical to oxybate’s goal of improving sleep.”⁴

For parents or caregivers of children with narcolepsy, once-nightly dosing not only eliminates the need to rouse a sleeping child for their second dose; it also subsequently removes the need for caregivers to also wake to ensure administration of said dose. 

The move towards once-nightly oxybate dosing in narcolepsy treatment, driven by patient preference, reflects broader trends in healthcare to improve medication adherence and therefore patient outcomes by streamlining dosing regimens. Clinicians need to encourage open conversations to understand the patient experience of chronically taking a middle-of-the-night dose. Patients may be hesitant to share challenges due to fear of being noncompliant; therefore, creating a “safe space” for candid feedback is paramount.2   

To this end, the online community remains an invaluable resource. It empowers patients to connect and exchange experiences and serves as a source of crucial information for providers. By listening to and learning from online conversations, providers can better respond to their patients, helping them bridge information gaps and ultimately improve narcolepsy care. At the same time, it should be recognized that misinformation exists on the internet; therefore, patients must be encouraged to view their clinician as the best source of information. As sleep science advances, it is imperative that providers stay informed about treatment innovations and incorporate this knowledge into practice, ensuring that patient care continually evolves.

To learn more about LUMRYZ, visit www.lumryz.com.