Delayed diagnosis of narcolepsy: Characterization and impact

Michael J. Thorpy, Ana C. Krieger

Research output: Contribution to journalArticle

97 Citations (Scopus)

Abstract

Narcolepsy, a chronic neurologic condition resulting from dysregulation of the sleep-wake cycle, usually has an onset at an early age. However, a long delay until diagnosis has been consistently reported in the literature across countries and several publications have focused on characterizing this delay. Most studies report a mean delay to diagnosis of up to 15. years, with individual cases of >60. years, although a trend over time toward a shorter diagnostic delay has been suggested. While variables associated with this delay have been identified, a lack of symptom recognition resulting in misdiagnosis prior to reaching the narcolepsy diagnosis is the likely underlying reason. This lack of symptom recognition is especially relevant considering the high comorbidity burden that has been shown in patients with narcolepsy as some disorders manifest with symptoms that overlap with narcolepsy. A consequence of delayed diagnosis is delayed treatment, which affects the burden of disease. Substantial detrimental effects on health-care resource utilization, employment, and quality of life have been described after narcolepsy onset and prior to the diagnosis of narcolepsy. This review highlights the importance of closing the diagnostic gap by expanding awareness of narcolepsy and its symptoms.

Original languageEnglish (US)
Pages (from-to)502-507
Number of pages6
JournalSleep Medicine
Volume15
Issue number5
DOIs
StatePublished - 2014

Fingerprint

Narcolepsy
Delayed Diagnosis
Patient Acceptance of Health Care
Health Resources
Diagnostic Errors
Age of Onset
Nervous System
Publications
Comorbidity
Sleep
Quality of Life

Keywords

  • Burden
  • Cataplexy
  • Diagnosis
  • Diagnostic delay
  • Misdiagnosis
  • Narcolepsy
  • Symptom onset

ASJC Scopus subject areas

  • Medicine(all)

Cite this

Delayed diagnosis of narcolepsy : Characterization and impact. / Thorpy, Michael J.; Krieger, Ana C.

In: Sleep Medicine, Vol. 15, No. 5, 2014, p. 502-507.

Research output: Contribution to journalArticle

Thorpy, Michael J. ; Krieger, Ana C. / Delayed diagnosis of narcolepsy : Characterization and impact. In: Sleep Medicine. 2014 ; Vol. 15, No. 5. pp. 502-507.
@article{377d2619416f4cbb8847e3a357989f9b,
title = "Delayed diagnosis of narcolepsy: Characterization and impact",
abstract = "Narcolepsy, a chronic neurologic condition resulting from dysregulation of the sleep-wake cycle, usually has an onset at an early age. However, a long delay until diagnosis has been consistently reported in the literature across countries and several publications have focused on characterizing this delay. Most studies report a mean delay to diagnosis of up to 15. years, with individual cases of >60. years, although a trend over time toward a shorter diagnostic delay has been suggested. While variables associated with this delay have been identified, a lack of symptom recognition resulting in misdiagnosis prior to reaching the narcolepsy diagnosis is the likely underlying reason. This lack of symptom recognition is especially relevant considering the high comorbidity burden that has been shown in patients with narcolepsy as some disorders manifest with symptoms that overlap with narcolepsy. A consequence of delayed diagnosis is delayed treatment, which affects the burden of disease. Substantial detrimental effects on health-care resource utilization, employment, and quality of life have been described after narcolepsy onset and prior to the diagnosis of narcolepsy. This review highlights the importance of closing the diagnostic gap by expanding awareness of narcolepsy and its symptoms.",
keywords = "Burden, Cataplexy, Diagnosis, Diagnostic delay, Misdiagnosis, Narcolepsy, Symptom onset",
author = "Thorpy, {Michael J.} and Krieger, {Ana C.}",
year = "2014",
doi = "10.1016/j.sleep.2014.01.015",
language = "English (US)",
volume = "15",
pages = "502--507",
journal = "Sleep Medicine",
issn = "1389-9457",
publisher = "Elsevier",
number = "5",

}

TY - JOUR

T1 - Delayed diagnosis of narcolepsy

T2 - Characterization and impact

AU - Thorpy, Michael J.

AU - Krieger, Ana C.

PY - 2014

Y1 - 2014

N2 - Narcolepsy, a chronic neurologic condition resulting from dysregulation of the sleep-wake cycle, usually has an onset at an early age. However, a long delay until diagnosis has been consistently reported in the literature across countries and several publications have focused on characterizing this delay. Most studies report a mean delay to diagnosis of up to 15. years, with individual cases of >60. years, although a trend over time toward a shorter diagnostic delay has been suggested. While variables associated with this delay have been identified, a lack of symptom recognition resulting in misdiagnosis prior to reaching the narcolepsy diagnosis is the likely underlying reason. This lack of symptom recognition is especially relevant considering the high comorbidity burden that has been shown in patients with narcolepsy as some disorders manifest with symptoms that overlap with narcolepsy. A consequence of delayed diagnosis is delayed treatment, which affects the burden of disease. Substantial detrimental effects on health-care resource utilization, employment, and quality of life have been described after narcolepsy onset and prior to the diagnosis of narcolepsy. This review highlights the importance of closing the diagnostic gap by expanding awareness of narcolepsy and its symptoms.

AB - Narcolepsy, a chronic neurologic condition resulting from dysregulation of the sleep-wake cycle, usually has an onset at an early age. However, a long delay until diagnosis has been consistently reported in the literature across countries and several publications have focused on characterizing this delay. Most studies report a mean delay to diagnosis of up to 15. years, with individual cases of >60. years, although a trend over time toward a shorter diagnostic delay has been suggested. While variables associated with this delay have been identified, a lack of symptom recognition resulting in misdiagnosis prior to reaching the narcolepsy diagnosis is the likely underlying reason. This lack of symptom recognition is especially relevant considering the high comorbidity burden that has been shown in patients with narcolepsy as some disorders manifest with symptoms that overlap with narcolepsy. A consequence of delayed diagnosis is delayed treatment, which affects the burden of disease. Substantial detrimental effects on health-care resource utilization, employment, and quality of life have been described after narcolepsy onset and prior to the diagnosis of narcolepsy. This review highlights the importance of closing the diagnostic gap by expanding awareness of narcolepsy and its symptoms.

KW - Burden

KW - Cataplexy

KW - Diagnosis

KW - Diagnostic delay

KW - Misdiagnosis

KW - Narcolepsy

KW - Symptom onset

UR - http://www.scopus.com/inward/record.url?scp=84900002785&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=84900002785&partnerID=8YFLogxK

U2 - 10.1016/j.sleep.2014.01.015

DO - 10.1016/j.sleep.2014.01.015

M3 - Article

C2 - 24780133

AN - SCOPUS:84900002785

VL - 15

SP - 502

EP - 507

JO - Sleep Medicine

JF - Sleep Medicine

SN - 1389-9457

IS - 5

ER -