Poster
115
(#115) Understanding Path to Diagnosis, HCP Relationships, and Treatment Regimens Among People Living With Narcolepsy
Psych Congress 2025
Abstract: Introduction: People with narcolepsy (PWN) often experience diagnostic delays and difficulties with quality care, including healthcare provider (HCP) access and treatment-related challenges. This survey assessed path to diagnosis, HCP relationships, and treatment regimens among PWN from MyNarcolepsyTeam, a social network of >11,000 members.
Methods: MyNarcolepsyTeam members were invited to participate in a 36-question online survey fielded between April 10 and May 9, 2024. Eligible participants had a narcolepsy diagnosis, were age ≥21 years, and resided in the United States.
Results: Of 88 respondents (female, 77%; age ≥50 years, 74%), 39% had narcolepsy type 1, 50% had narcolepsy type 2, and 11% were unsure. Most respondents saw ≥2 clinicians to receive a diagnosis (81%) and to address narcolepsy symptoms (68%). Satisfaction with clinicians was higher among respondents seeing sleep specialists vs non-sleep specialists (70% vs 38%). More respondents seeing sleep specialists vs non-sleep specialists reported discussions of mental health (48% vs 31%) and long-term planning (38% vs 15%). 67% of respondents took ≥2 medications to treat their symptoms. Common current medications for narcolepsy included stimulants (56%) and antidepressants (38%). 44% of respondents found their treatment regimen extremely/very/somewhat challenging, of whom 83% were taking multiple medications. Treatment challenges included loss of efficacy, side effects, access barriers, and complex medication regimens.
Conclusion: These findings highlight the challenges PWN face, emphasizing the need for expedited diagnosis and access to specialized healthcare. Improved treatment regimens and enhanced discussions between PWN and HCPs to address mental health and long-term planning are warranted.
Short Description: To characterize diagnosis journeys, relationships with clinicians, and treatment regimens among people with narcolepsy (PWN), a 36-question online survey was sent to MyNarcolepsyTeam members between April and May 2024. Respondents described seeing multiple clinicians prior to diagnosis and treatment and reported higher satisfaction and more discussions of mental health and long-term planning with sleep specialists vs non-sleep specialists. Given PWN's treatment challenges, specialized healthcare for these individuals is needed.
Name of Sponsoring Organization(s): Avadel Pharmaceuticals
Methods: MyNarcolepsyTeam members were invited to participate in a 36-question online survey fielded between April 10 and May 9, 2024. Eligible participants had a narcolepsy diagnosis, were age ≥21 years, and resided in the United States.
Results: Of 88 respondents (female, 77%; age ≥50 years, 74%), 39% had narcolepsy type 1, 50% had narcolepsy type 2, and 11% were unsure. Most respondents saw ≥2 clinicians to receive a diagnosis (81%) and to address narcolepsy symptoms (68%). Satisfaction with clinicians was higher among respondents seeing sleep specialists vs non-sleep specialists (70% vs 38%). More respondents seeing sleep specialists vs non-sleep specialists reported discussions of mental health (48% vs 31%) and long-term planning (38% vs 15%). 67% of respondents took ≥2 medications to treat their symptoms. Common current medications for narcolepsy included stimulants (56%) and antidepressants (38%). 44% of respondents found their treatment regimen extremely/very/somewhat challenging, of whom 83% were taking multiple medications. Treatment challenges included loss of efficacy, side effects, access barriers, and complex medication regimens.
Conclusion: These findings highlight the challenges PWN face, emphasizing the need for expedited diagnosis and access to specialized healthcare. Improved treatment regimens and enhanced discussions between PWN and HCPs to address mental health and long-term planning are warranted.
Short Description: To characterize diagnosis journeys, relationships with clinicians, and treatment regimens among people with narcolepsy (PWN), a 36-question online survey was sent to MyNarcolepsyTeam members between April and May 2024. Respondents described seeing multiple clinicians prior to diagnosis and treatment and reported higher satisfaction and more discussions of mental health and long-term planning with sleep specialists vs non-sleep specialists. Given PWN's treatment challenges, specialized healthcare for these individuals is needed.
Name of Sponsoring Organization(s): Avadel Pharmaceuticals
