Poster
121
(#121) Characterizing Patient-Reported Cognitive Difficulties and Their Impact on Daily Life in Narcolepsy Type 1
Psych Congress 2025
Abstract: Introduction: Narcolepsy type 1 (NT1) is a chronic, rare neurological disorder characterized by excessive daytime sleepiness (EDS), cataplexy, disrupted nighttime sleep, hypnagogic and hypnopompic hallucinations, and sleep paralysis. Cognitive difficulties in NT1 are understudied, though consequential for daily life. To address this gap, qualitative interviews were conducted to explore the experience of cognitive difficulties in adults with NT1.
Methods: In-depth, individual telephone interviews were conducted with adults diagnosed with NT1 in the USA. Participants were recruited through a patient advocacy organization's website and social media, a market research organization, and referrals. Interviews followed a semi-structured guide. Informed by a grounded theory approach, qualitative analysis identified key conceptual themes related to cognitive difficulties reported by adults with NT1 and their consequences in daily life.
Results: Of 46 participants, 45 (98%) reported cognitive difficulties; most common were trouble remembering (89%, n=41) and difficulty with focus/sustained attention (87%, n=40). Most participants characterized them as severe or moderate (79%, n=33/42) and occurring daily (73%, n=30/41). Of participants who rated the current impact of their cognitive difficulties on their functioning/daily life, 67% (n=22/33) reported severe or moderate impact. Notably, 12/45 (27%) participants reported no improvement and 29/45 (64%) reported incomplete resolution of their cognitive difficulties following drug treatments for NT1 symptoms, including EDS.
Conclusion: Adults with NT1 report cognitive difficulties that are frequent and severe, interfere with daily activities, and often persist despite treatment. These findings highlight the need to assess cognitive function in people with NT1 and identify treatments that address NT1-associated cognitive symptoms.
Short Description: Cognitive difficulties in narcolepsy type 1 (NT1) remain understudied, despite their substantial impact on daily functioning. To address this gap, qualitative interviews were conducted among adults with NT1 to explore their experiences of cognitive difficulties. Adults with NT1 reported these difficulties to be frequent, severe, interfering with daily activities, and often persistent despite treatment. These findings highlight the need to assess cognitive function in people with NT1 and identify treatments that address NT1-associated cognitive symptoms.
Name of Sponsoring Organization(s): Takeda Development Center Americas, Inc.
Methods: In-depth, individual telephone interviews were conducted with adults diagnosed with NT1 in the USA. Participants were recruited through a patient advocacy organization's website and social media, a market research organization, and referrals. Interviews followed a semi-structured guide. Informed by a grounded theory approach, qualitative analysis identified key conceptual themes related to cognitive difficulties reported by adults with NT1 and their consequences in daily life.
Results: Of 46 participants, 45 (98%) reported cognitive difficulties; most common were trouble remembering (89%, n=41) and difficulty with focus/sustained attention (87%, n=40). Most participants characterized them as severe or moderate (79%, n=33/42) and occurring daily (73%, n=30/41). Of participants who rated the current impact of their cognitive difficulties on their functioning/daily life, 67% (n=22/33) reported severe or moderate impact. Notably, 12/45 (27%) participants reported no improvement and 29/45 (64%) reported incomplete resolution of their cognitive difficulties following drug treatments for NT1 symptoms, including EDS.
Conclusion: Adults with NT1 report cognitive difficulties that are frequent and severe, interfere with daily activities, and often persist despite treatment. These findings highlight the need to assess cognitive function in people with NT1 and identify treatments that address NT1-associated cognitive symptoms.
Short Description: Cognitive difficulties in narcolepsy type 1 (NT1) remain understudied, despite their substantial impact on daily functioning. To address this gap, qualitative interviews were conducted among adults with NT1 to explore their experiences of cognitive difficulties. Adults with NT1 reported these difficulties to be frequent, severe, interfering with daily activities, and often persistent despite treatment. These findings highlight the need to assess cognitive function in people with NT1 and identify treatments that address NT1-associated cognitive symptoms.
Name of Sponsoring Organization(s): Takeda Development Center Americas, Inc.
