Narcolepsy type 1 carries a hidden emotional burden, study finds
Symptoms are often underestimated, even by close family members, friends
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Adults with type 1 narcolepsy (NT1) — generally the more severe disease type — often deal with symptoms beyond just uncontrollable sleepiness, including internalizing emotional and behavioral challenges that others tend to underestimate, a study suggests.
Combining reports from both patients and close observers — family members and friends dubbed “informants” by researchers — may give a more accurate picture of how severe narcolepsy symptoms actually are for people with NT1, according to the researchers.
Importantly, the scientists noted, “the symptoms that patients described as most distressing were those that remained least visible to informants.”
Among individuals with the rare condition, “NT1 is often experienced as an ‘invisible disability,’” the team wrote.
The study detailing the findings, titled “The Hidden Burden of Narcolepsy Type 1: Discordance in Psychobehavioral Symptoms Between Patient Self-Reports and Reports from Close Family Members and Friends,” was published in the journal Sleep Medicine.
In a highlights section, the scientists noted that “adults with NT1 report substantial psychobehavioral impairments beyond core sleep symptoms.”
For the researchers, who ran the study at 18 centers in France, “bridging this perception gap, through awareness, supportive communication, and targeted family-based interventions, should be a priority to improve recognition of patients’ needs, reduce stigma, and enhance long-term quality of life.”
Family, friends reported less severe symptoms than patients
In narcolepsy, the brain cannot properly regulate sleep-wake cycles. As a result, patients feel uncontrollable urges to sleep at any time of day. In NT1, this is caused by the loss of brain cells that produce hypocretin, a chemical that helps regulate wakefulness. In addition to excessive sleepiness, patients may also experience other symptoms such as mood changes, though these may go unnoticed.
In this study (NCT03765892), the researchers compared 174 adults with NT1 to 126 age-matched adults without the condition, who served as controls. Both groups completed the Adult Self-Report, where they rated their own emotional and behavioral symptoms. A close person, who could be a partner, family member, or friend, also completed a matching questionnaire called the Adult Behavior Checklist.
A higher proportion of adults with NT1 reported psychiatric symptoms than controls. These included internalizing symptoms such as anxiety and withdrawal at a clinically concerning level (44.8% vs. 19.1%) and externalizing symptoms, such as impulsive or rule-breaking behavior (17.2% vs. 6.2%).
Cognitive problems and difficulty keeping attention were also more frequent among adults with NT1, the researchers found.
However, close informants — 97 paired with patients and 96 with controls — generally rated patients as having less severe psychiatric symptoms than the patients reported themselves. This gap was especially large for internalizing symptoms, such as anxiety and depression, which are less visible from the outside. In controls, the gap was notably smaller.
Patients who better agreed with their close informants tended to have better outcomes, the data suggest.
This finding emphasizes the importance of … promoting family-focused education to improve understanding of the multifaceted psychobehavioral impact of [narcolepsy type 1] and to foster supportive interpersonal environments.
“The most favorable professional prognosis was observed when patient and informant evaluations were concordant, highlighting an association between shared symptom appraisal and better professional outcomes,” the investigators wrote.
According to the researchers, “this finding emphasizes the importance of involving both patients and informants in clinical assessment and promoting family-focused education to improve understanding of the multifaceted psychobehavioral impact of NT1 and to foster supportive interpersonal environments.”
Overall, the results show that symptoms, especially emotional symptoms, are not always fully recognized by partners, family members, and friends. According to the team, this highlights the importance of considering both patient self-reports and reports from close informants to better support treatment and care.
