1.Clinical Characteristics, Comorbidities, and Quality of Life in Korean Patients With Narcolepsy: Findings From an Online Survey
Namoh KIM ; Se-yeon MIN ; Ki-Young JUNG
Journal of Sleep Medicine 2024;21(2):116-122
Objectives:
Narcolepsy is a chronic neurological disorder characterized by excessive daytime sleepiness and abnormal rapid eye movement sleep, both of which significantly impact daily functioning and quality of life. This study aimed to examine the clinical characteristics, comorbidities, diagnostic delays, and quality of life of Korean patients with narcolepsy through a comprehensive nationwide survey.
Methods:
An online survey targeting members of the Korea Narcolepsy Association was conducted between July and October 2023. The survey collected demographic information, clinical characteristics, comorbid conditions, diagnostic tools, and quality of life assessments using the World Health Organization Quality of Life-BREF (WHOQOL-BREF).
Results:
A total of 299 individuals participated in the study, with a mean age of 32.2 years. The average diagnostic delay was approximately 11 years, with initial symptoms appearing at a mean age of 16.6 years. Excessive daytime sleepiness was the most common initial symptom. The most frequent comorbidities included depression, obstructive sleep apnea, and anxiety disorders. WHOQOL-BREF scores indicated a moderately low quality of life across all domains, with patients having narcolepsy type 1 experiencing more severe symptoms and lower quality of life scores than those of patients having narcolepsy type 2. Higher education levels, marital status, and regular exercise were positively associated with better WHOQOL-BREF scores, whereas depression, older age, and poor sleep quality were negatively associated.
Conclusions
The findings from this survey underscore the lower quality of life, with notable delays in diagnosis and a high prevalence of comorbid conditions. The results suggest a need for improved awareness, timely diagnosis, and comprehensive management strategies that address both the primary symptoms of narcolepsy and its associated comorbidities.
2.Daily Life Difficulties and Disease Awareness of Patients With Narcolepsy
Yong Su CHANG ; Namoh KIM ; Ki-Young JUNG
Journal of Sleep Medicine 2025;22(1):1-7
Narcolepsy significantly affects the daily life of individuals due to excessive daytime sleepiness and cataplexy, reducing the quality of life and increasing the risk of accidents and social difficulties. Despite its profound impact on daily life, only a few studies have investigated the specific difficulties and awareness of patients with narcolepsy. Therefore, in this study, we aimed to assess the daily challenges and disease awareness of patients with narcolepsy. Methods: We conducted an online survey of 299 patients with narcolepsy. The survey included questions on patient demographics, clinical characteristics, difficulties, and disease awareness. Results: The patients reported considerable difficulties in academic performance, memory, and driving, with those with narcolepsy type 1 reporting greater difficulties than those with narcolepsy type 2. Older age and depression were positively associated with higher difficulty scores, whereas female sex was associated with lower difficulty scores. Notably, disease awareness varied, with 30.4% and 5.4% of participants showing moderate and no awareness of narcolepsy, respectively. Conclusions: Overall, this study highlights the daily life challenges and varying disease awareness of patients with narcolepsy. Our findings emphasize the need for targeted education and effective policy interventions to reduce the difficulties and improve the quality of life of patients with narcolepsy.
3.Clinical Characteristics, Comorbidities, and Quality of Life in Korean Patients With Narcolepsy: Findings From an Online Survey
Namoh KIM ; Se-yeon MIN ; Ki-Young JUNG
Journal of Sleep Medicine 2024;21(2):116-122
Objectives:
Narcolepsy is a chronic neurological disorder characterized by excessive daytime sleepiness and abnormal rapid eye movement sleep, both of which significantly impact daily functioning and quality of life. This study aimed to examine the clinical characteristics, comorbidities, diagnostic delays, and quality of life of Korean patients with narcolepsy through a comprehensive nationwide survey.
Methods:
An online survey targeting members of the Korea Narcolepsy Association was conducted between July and October 2023. The survey collected demographic information, clinical characteristics, comorbid conditions, diagnostic tools, and quality of life assessments using the World Health Organization Quality of Life-BREF (WHOQOL-BREF).
Results:
A total of 299 individuals participated in the study, with a mean age of 32.2 years. The average diagnostic delay was approximately 11 years, with initial symptoms appearing at a mean age of 16.6 years. Excessive daytime sleepiness was the most common initial symptom. The most frequent comorbidities included depression, obstructive sleep apnea, and anxiety disorders. WHOQOL-BREF scores indicated a moderately low quality of life across all domains, with patients having narcolepsy type 1 experiencing more severe symptoms and lower quality of life scores than those of patients having narcolepsy type 2. Higher education levels, marital status, and regular exercise were positively associated with better WHOQOL-BREF scores, whereas depression, older age, and poor sleep quality were negatively associated.
Conclusions
The findings from this survey underscore the lower quality of life, with notable delays in diagnosis and a high prevalence of comorbid conditions. The results suggest a need for improved awareness, timely diagnosis, and comprehensive management strategies that address both the primary symptoms of narcolepsy and its associated comorbidities.
4.Daily Life Difficulties and Disease Awareness of Patients With Narcolepsy
Yong Su CHANG ; Namoh KIM ; Ki-Young JUNG
Journal of Sleep Medicine 2025;22(1):1-7
Narcolepsy significantly affects the daily life of individuals due to excessive daytime sleepiness and cataplexy, reducing the quality of life and increasing the risk of accidents and social difficulties. Despite its profound impact on daily life, only a few studies have investigated the specific difficulties and awareness of patients with narcolepsy. Therefore, in this study, we aimed to assess the daily challenges and disease awareness of patients with narcolepsy. Methods: We conducted an online survey of 299 patients with narcolepsy. The survey included questions on patient demographics, clinical characteristics, difficulties, and disease awareness. Results: The patients reported considerable difficulties in academic performance, memory, and driving, with those with narcolepsy type 1 reporting greater difficulties than those with narcolepsy type 2. Older age and depression were positively associated with higher difficulty scores, whereas female sex was associated with lower difficulty scores. Notably, disease awareness varied, with 30.4% and 5.4% of participants showing moderate and no awareness of narcolepsy, respectively. Conclusions: Overall, this study highlights the daily life challenges and varying disease awareness of patients with narcolepsy. Our findings emphasize the need for targeted education and effective policy interventions to reduce the difficulties and improve the quality of life of patients with narcolepsy.
5.Clinical Characteristics, Comorbidities, and Quality of Life in Korean Patients With Narcolepsy: Findings From an Online Survey
Namoh KIM ; Se-yeon MIN ; Ki-Young JUNG
Journal of Sleep Medicine 2024;21(2):116-122
Objectives:
Narcolepsy is a chronic neurological disorder characterized by excessive daytime sleepiness and abnormal rapid eye movement sleep, both of which significantly impact daily functioning and quality of life. This study aimed to examine the clinical characteristics, comorbidities, diagnostic delays, and quality of life of Korean patients with narcolepsy through a comprehensive nationwide survey.
Methods:
An online survey targeting members of the Korea Narcolepsy Association was conducted between July and October 2023. The survey collected demographic information, clinical characteristics, comorbid conditions, diagnostic tools, and quality of life assessments using the World Health Organization Quality of Life-BREF (WHOQOL-BREF).
Results:
A total of 299 individuals participated in the study, with a mean age of 32.2 years. The average diagnostic delay was approximately 11 years, with initial symptoms appearing at a mean age of 16.6 years. Excessive daytime sleepiness was the most common initial symptom. The most frequent comorbidities included depression, obstructive sleep apnea, and anxiety disorders. WHOQOL-BREF scores indicated a moderately low quality of life across all domains, with patients having narcolepsy type 1 experiencing more severe symptoms and lower quality of life scores than those of patients having narcolepsy type 2. Higher education levels, marital status, and regular exercise were positively associated with better WHOQOL-BREF scores, whereas depression, older age, and poor sleep quality were negatively associated.
Conclusions
The findings from this survey underscore the lower quality of life, with notable delays in diagnosis and a high prevalence of comorbid conditions. The results suggest a need for improved awareness, timely diagnosis, and comprehensive management strategies that address both the primary symptoms of narcolepsy and its associated comorbidities.
6.Daily Life Difficulties and Disease Awareness of Patients With Narcolepsy
Yong Su CHANG ; Namoh KIM ; Ki-Young JUNG
Journal of Sleep Medicine 2025;22(1):1-7
Narcolepsy significantly affects the daily life of individuals due to excessive daytime sleepiness and cataplexy, reducing the quality of life and increasing the risk of accidents and social difficulties. Despite its profound impact on daily life, only a few studies have investigated the specific difficulties and awareness of patients with narcolepsy. Therefore, in this study, we aimed to assess the daily challenges and disease awareness of patients with narcolepsy. Methods: We conducted an online survey of 299 patients with narcolepsy. The survey included questions on patient demographics, clinical characteristics, difficulties, and disease awareness. Results: The patients reported considerable difficulties in academic performance, memory, and driving, with those with narcolepsy type 1 reporting greater difficulties than those with narcolepsy type 2. Older age and depression were positively associated with higher difficulty scores, whereas female sex was associated with lower difficulty scores. Notably, disease awareness varied, with 30.4% and 5.4% of participants showing moderate and no awareness of narcolepsy, respectively. Conclusions: Overall, this study highlights the daily life challenges and varying disease awareness of patients with narcolepsy. Our findings emphasize the need for targeted education and effective policy interventions to reduce the difficulties and improve the quality of life of patients with narcolepsy.
7.Localized Upper Back Pain: A Rare Variant of Restless Legs Syndrome
Seungwon SONG ; Namoh KIM ; Yong Woo SHIN ; Ki-Young JUNG
Journal of Sleep Medicine 2024;21(2):123-125
Restless legs syndrome (RLS) is a chronic sensory-motor neuron disorder characterized by an urge to move the legs, accompanied by abnormal sensations and pain that occur during sitting and resting periods but are relieved by movement. Although RLS typically affects the lower limbs, cases of localized sensation in the chest, lower back, abdomen, arm, and perineum have also been reported. To date, only one documented case of RLS localized to the upper back has been reported. In this report, we present a rare variant of RLS that manifests as symptoms localized in the upper back.
8.Localized Upper Back Pain: A Rare Variant of Restless Legs Syndrome
Seungwon SONG ; Namoh KIM ; Yong Woo SHIN ; Ki-Young JUNG
Journal of Sleep Medicine 2024;21(2):123-125
Restless legs syndrome (RLS) is a chronic sensory-motor neuron disorder characterized by an urge to move the legs, accompanied by abnormal sensations and pain that occur during sitting and resting periods but are relieved by movement. Although RLS typically affects the lower limbs, cases of localized sensation in the chest, lower back, abdomen, arm, and perineum have also been reported. To date, only one documented case of RLS localized to the upper back has been reported. In this report, we present a rare variant of RLS that manifests as symptoms localized in the upper back.
9.Localized Upper Back Pain: A Rare Variant of Restless Legs Syndrome
Seungwon SONG ; Namoh KIM ; Yong Woo SHIN ; Ki-Young JUNG
Journal of Sleep Medicine 2024;21(2):123-125
Restless legs syndrome (RLS) is a chronic sensory-motor neuron disorder characterized by an urge to move the legs, accompanied by abnormal sensations and pain that occur during sitting and resting periods but are relieved by movement. Although RLS typically affects the lower limbs, cases of localized sensation in the chest, lower back, abdomen, arm, and perineum have also been reported. To date, only one documented case of RLS localized to the upper back has been reported. In this report, we present a rare variant of RLS that manifests as symptoms localized in the upper back.
10.Treatment Outcome After Switching From Galcanezumab to Fremanezumab in Patients With Migraine
Michelle Sojung YOUN ; Namoh KIM ; Mi Ji LEE ; Manho KIM
Journal of Clinical Neurology 2024;20(3):300-305
Background:
and PurposeMonoclonal antibodies (mAbs) targeting calcitonin-gene-related peptide (CGRP) or its receptor (anti-CGRP-R) have been widely administered to patients with migraine who show inadequate responses to preventive medications. Among patients in whom a particular anti-CGRP-R mAb is ineffective, switching between different anti-CGRP-R mAbs can be the next option. Few studies have investigated treatment outcomes for antibody switching, especially between mAbs with the same target of the CGRP ligand. We aimed to determine the treatment outcome after switching between two anti-CGRP mAbs (galcanezumab to fremanezumab).
Methods:
We identified migraine patients in a prospective headache clinic registry who received galcanezumab for ≥3 months and were switched to fremanezumab for a further ≥3 months at a single university hospital. We defined a treatment response as a ≥50% reduction in the number of days with a moderate or severe headache at the third month of treatment relative to baseline. The treatment response after switching to fremanezumab was compared with the initial treatment response to galcanezumab.
Results:
Among 21 patients identified in the registry, 7 (33.3%) were initial responders to galcanezumab. After switching to fremanezumab, 7 (33.3%) showed a treatment response. The treatment response rate was 28.6% in the initial responders and 71.4% in the nonresponders to galcanezumab (p>0.999).
Conclusions
Switching between anti-CGRP mAbs (galcanezumab to fremanezumab) yielded a treatment outcome comparable to that reported previously when switching from an anti-CGRP-R mAb (erenumab) to an anti-CGRP mAb (galcanezumab or fremanezumab). The treatment response to fremanezumab seems to be independent of the prior treatment response to galcanezumab. Our findings suggest that switching to another anti-CGRP mAb can be considered when a particular anti-CGRP mAb is ineffective or intolerable.