Canadian survey shows heavy toll of narcolepsy on daily life
Impacts extend beyond sleep, include long delays in diagnosis
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New survey findings highlight that narcolepsy can affect much more than daytime alertness, with many Canadians reporting lengthy delays in diagnosis.
New survey findings highlight that narcolepsy can affect much more than daytime alertness, with many Canadians reporting lengthy delays in diagnosis and a substantial impact on their daily lives.
That burden was reflected in quality-of-life ratings, with 68% of respondents scoring narcolepsy impact between eight and 10 on a 10-point scale, where 10 represented the greatest burden. Significant effects on their work, relationships, and emotional well-being were reported.
The survey was conducted in recognition of World Narcolepsy Day, marked each year on Sept. 22, by the Mood Disorders Society of Canada (MDSC), in collaboration with Wake Up Narcolepsy. It’s aims to provide a better understanding of the experiences of Canadians living with narcolepsy and their caregivers.
“Despite its impact, survey findings identify gaps across the narcolepsy journey, from misdiagnosis to ongoing challenges managing symptoms,” Aimée Tran Ba Huy, national project coordinator with MDSC, said in a press release. “As a disease that is often associated with mental illness comorbidities, narcolepsy can have far-reaching effects on quality of life, relationships, work and overall well-being.”
More than half of participants initially received different diagnosis
Narcolepsy is a chronic neurological condition that affects the brain’s ability to regulate sleep and wakefulness, resulting in symptoms like excessive daytime sleepiness, disrupted nighttime sleep, and difficulty thinking and concentrating, known as brain fog.
The online survey included 47 Canadian adults, including 43 individuals with narcolepsy and four caregivers. The survey was distributed in English and French through MDSC’s social media channels and selected partners.
Most participants reported having received a diagnosis from a healthcare professional, including type 1 (47%) and type 2 (36%) narcolepsy. For almost two-thirds of participants, it took six or more years to receive a diagnosis after they experienced the first symptoms, and 31% waited more than 10 years. More than half (56%) initially received a different diagnosis, such as depression, chronic fatigue or burnout, and anxiety.
In the previous year, respondents reported experiencing a mean of seven symptoms. The most common were brain fog (a group of symptoms that affect thinking, memory, and concentration; 85%), excessive daytime sleepiness and disrupted nighttime sleep (83% each), automatic behaviors (performing activities without later remembering them, 77%), and emotional issues (72%).
Impact on quality of life was rated at an average score of 8.2 out of 10. Generally, the participants said the condition affected several areas of their daily lives, particularly productivity and daily responsibilities (81%), relationships and social activities (79%), and emotional well-being (66%).
Accessing care, managing medication present challenges
Respondents were also asked which treatments or strategies they were currently using to manage narcolepsy symptoms. Lifestyle or routine changes and scheduled naps were most common. Many were also currently using or had previously used medications (89%) and relied on another person for help (63%), particularly for household tasks and emotional support.
A significant proportion of participants who were taking or had taken medications reported side effects, including changes in mood or emotional state (45%), heart-related effects (40%), and headaches (31%). Many also reported challenges in managing medications, usually related to taking them multiple times, difficulties accessing or paying for medication, and attending follow-up appointments.
With 72% of respondents reporting that available treatments are not adequately meeting their needs, there is a clear need to improve recognition, support and access to effective treatment options for people living with narcolepsy.
Care access challenges were also common, particularly related to ineffective treatments or associated side effects (72%), inappropriate access to care (61%), and healthcare providers not taking symptoms seriously (61%). Respondents also mentioned financial strain from the disease, associated with managing fatigue, travel to appointments, or costs of medications and other forms of support. Costs related to missed work were also common.
“As we recognize World Narcolepsy Day, we encourage Canadians to learn more about the symptoms and talk to their healthcare professional about diagnosis, care and treatment,” Tran Ba Huy said. “With 72% of respondents reporting that available treatments are not adequately meeting their needs, there is a clear need to improve recognition, support and access to effective treatment options for people living with narcolepsy.”
When considering new medications for narcolepsy, respondents prioritize those that improve daily functioning, nighttime sleep quality, cognition, and alertness during daytime. If a medication effectively manages their symptoms, participants were willing to tolerate some potential side effects, including changes in appetite or weight, concerns about dependence or tolerance, headaches, heart-related effects, and digestive problems.
“Before I was diagnosed, I slept through a lot of school. My grades dropped, I was constantly exhausted, and eventually I lost my driver’s licence until I was able to receive treatment,” Rosa Overwater said. “Even when I’m medicated and feel the most awake, it never truly goes away. It affects everything from school and work to social activities, and many people don’t realize how much it can impact day-to-day life.”
According to the MDSC, the findings reflect the experiences of the respondents and thus may not be representative of all Canadians living with narcolepsy or their caregivers. The survey was supported through a grant from Takeda, the company that markets Orzeyful (oveporexton) for type 1 narcolepsy.
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