{
    "abstract": "Narcolepsy is a chronic, burdensome neurologic disorder that significantly impacts the daily life of people with narcolepsy (PWN). Real-world perspectives from PWN can help address their unique experiences and treatment needs. PWN were surveyed to examine the path to a narcolepsy diagnosis, the breadth of symptom burden experienced by PWN, and current trends in treatment.\nA 15-min online survey was sent by email to 3959 US members of MyNarcolepsyTeam (February 2022). The survey was divided into three sections (screening [patient characteristics], diagnosis/symptoms, and patient quality of life) for a total of 27 questions.\nIn total, 110 members completed the survey. Of these, most were female (84%) and nearly half (48%) were diagnosed with narcolepsy type 1 (with cataplexy). Approximately one-third (31%) of members reported receiving a definitive diagnosis \u2265 10 years after first speaking with a clinician; most were previously diagnosed with depression (73%). Excessive daytime sleepiness (EDS, 93%) and fatigue (84%) were the most frequently reported symptoms that prompted respondents to seek a diagnosis or feel that something was wrong. Additionally, EDS was reported as the most troubling symptom (92%). Respondents' most desired treatment outcome was to stop sleeping during the day (77%). Most (76%) indicated an extremely or very severe impact on daily life. One in eight respondents were not taking any medication for their narcolepsy. Of those taking medication, 58% received polypharmacy to address narcolepsy symptoms.\nThese survey findings further characterize the diagnostic delay, symptom burden, and treatment needs of PWN. Understanding the breadth of impact of narcolepsy from the patients' perspective could improve shared decision-making between PWN and their treating clinicians.",
    "authors": [
        {
            "affiliation": "Johns Hopkins Medical Institutions, Johns Hopkins All Children's Hospital, St. Petersburg, FL, USA.",
            "firstname": "Luis E",
            "initials": "LE",
            "lastname": "Ortiz"
        },
        {
            "affiliation": "Geisinger Commonwealth School of Medicine, Geisinger Medical Center, Janet Weis Children's Hospital, Danville, PA, USA.",
            "firstname": "Anne Marie",
            "initials": "AM",
            "lastname": "Morse"
        },
        {
            "affiliation": "Mayo Clinic, Phoenix, AZ, USA.",
            "firstname": "Lois",
            "initials": "L",
            "lastname": "Krahn"
        },
        {
            "affiliation": "Comprehensive Sleep Medicine Associates, Houston, TX, USA.",
            "firstname": "Maggie",
            "initials": "M",
            "lastname": "Lavender"
        },
        {
            "affiliation": "Patient Author, Erin, TN, USA.",
            "firstname": "Matthew",
            "initials": "M",
            "lastname": "Horsnell"
        },
        {
            "affiliation": "MyHealthTeam, San Francisco, CA, USA.",
            "firstname": "Dianna",
            "initials": "D",
            "lastname": "Cronin"
        },
        {
            "affiliation": "MyHealthTeam, San Francisco, CA, USA.",
            "firstname": "Beth",
            "initials": "B",
            "lastname": "Schneider"
        },
        {
            "affiliation": "Avadel Pharmaceuticals, 16640 Chesterfield Grove Road, Suite 200, Chesterfield, MO, 63005, USA. jgudeman@avadel.com.",
            "firstname": "Jennifer",
            "initials": "J",
            "lastname": "Gudeman"
        }
    ],
    "conclusions": null,
    "copyrights": "\u00a9 2025. The Author(s).",
    "doi": "10.1007/s40263-024-01142-8",
    "journal": "CNS drugs",
    "keywords": [],
    "methods": null,
    "publication_date": "2025-03-20",
    "pubmed_id": "40111736\n28179647\n3704444\n33051943\n28159098\n28424564\n30526757\n20114128\n21689985\n34304148\n19699146\n24393754\n21924951\n11739821\n21145280\n32197224\n32032921\n25458251\n8341891\n18436380\n7301633\n18830438\n14592300\n27855744\n34743789\n32765142\n30355740\n40111740\n24890646\n34262379\n15994123\n18246980\n34173695\n34036640\n31695532",
    "results": "In total, 110 members completed the survey. Of these, most were female (84%) and nearly half (48%) were diagnosed with narcolepsy type 1 (with cataplexy). Approximately one-third (31%) of members reported receiving a definitive diagnosis \u2265 10 years after first speaking with a clinician; most were previously diagnosed with depression (73%). Excessive daytime sleepiness (EDS, 93%) and fatigue (84%) were the most frequently reported symptoms that prompted respondents to seek a diagnosis or feel that something was wrong. Additionally, EDS was reported as the most troubling symptom (92%). Respondents' most desired treatment outcome was to stop sleeping during the day (77%). Most (76%) indicated an extremely or very severe impact on daily life. One in eight respondents were not taking any medication for their narcolepsy. Of those taking medication, 58% received polypharmacy to address narcolepsy symptoms.",
    "title": "A Survey of People Living with Narcolepsy in the USA: Path to Diagnosis, Quality of Life, and Treatment Landscape from the Patient's Perspective.",
    "xml": "<Element 'PubmedArticle' at 0x7885044b6200>"
}