Health-related quality of life in patients with narcolepsy types 1 and 2 from a Sleep Center in Brazil

Cremaschi, Renata Carvalho; Hirotsu, Camila; Tufik, Sérgio; Coelho, Fernando Morgadinho Santos

doi:10.1590/0004-282x20200032

Cited by 4 publications

(8 citation statements)

References 27 publications

(18 reference statements)

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“… 45 Managing these comorbidities is crucial to enhancing the well-being of these patients, directly impacting their overall quality of life. 11 …”

Section: Comorbiditiesmentioning

confidence: 99%

“…Poor health status has been noted in Brazilians with narcolepsy type 2, suggesting that obesity negatively impacts physical domains. 47 …”

Section: Comorbiditiesmentioning

confidence: 99%

“… 10 This ambiguity in diagnosis may have adverse implications for individuals with narcolepsy in various aspects of their lives, including personal, professional, and legal domains. 11 This narrative review aims to comprehensively examine and discuss the current understanding of narcolepsy, specifically focusing on its clinical implications.…”

Section: Introductionmentioning

confidence: 99%

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Narcolepsy: an interface among neurology, immunology, sleep, and genetics

Coelho

2024

Arq Neuropsiquiatr

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Narcolepsy is a primary disorder of the central nervous system resulting from genetic, environmental, and immunological interactions defined as excessive daytime sleepiness plus cataplexy, hallucinations, sleep paralysis, and sleep fragmentation. The pathophysiology is not entirely known, but the interaction among genetic predisposition, environmental exposition, and immune component with consequent hypocretin-1 deficiency is the model to explain narcolepsy type I. The mechanism of narcolepsy type II is less understood. There is a delay of over ten years for the diagnosis of narcolepsy around the world. Patients with narcolepsy have many comorbidities with a negative impact on quality of life. The treatment of narcolepsy must contain an educational approach for the family, coworkers, and patients. Scheduled naps and sleep hygiene are essential to minimize the dose of medications. Much progress has been seen in the pharmacological treatment of narcolepsy with new stimulants, different presentations of oxybate, and recent studies with orexin agonists. Narcolepsy is a rare disease that needs to be more understood and highlighted to avoid delayed diagnosis and severe disabilities in patients.

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“… 45 Managing these comorbidities is crucial to enhancing the well-being of these patients, directly impacting their overall quality of life. 11 …”

Section: Comorbiditiesmentioning

confidence: 99%

“…Poor health status has been noted in Brazilians with narcolepsy type 2, suggesting that obesity negatively impacts physical domains. 47 …”

Section: Comorbiditiesmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Narcolepsy: an interface among neurology, immunology, sleep, and genetics

Coelho

2024

Arq Neuropsiquiatr

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“…Some studies of the quality of life of NT1 and NT2 revealed incongruent results. A recent study reported that the physical role functioning score of SF-36 was lower in NT1 than in NT2 and controls ( 7 ), while another study showed no difference in the total score between NT1 and NT2 ( 8 ).…”

Section: Introductionmentioning

confidence: 97%

Quality of life changes and their predictors in young adult narcolepsy patients after treatment: A real-world cohort study

et al. 2022

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BackgroundWe conducted a five-year prospective follow-up study to track the real-world quality of life of patients with narcolepsy after medication and analyzed predictors.MethodsThe study ultimately included 157 participants who completed 5-year follow-up, 111 had type 1 narcolepsy (NT1) and 46 had type 2 narcolepsy (NT2). Polysomnography, multiple sleep latency test, actigraphy and HLA-typing were conducted. The Short Form 36 Health Survey Questionnaire (SF-36), the Stanford Center for Narcolepsy Sleep Inventory, the Epworth Sleepiness Scale (ESS), the visual analog for hypersomnolence (VAS), and Conners' Continuous Performance Test were used. Descriptive statistics, repeated measures, and hierarchical linear models were applied for analysis.ResultsMost demographic and clinical data did not significantly differ between groups, but the NT1 group had significantly more overweight, more severe narcoleptic symptoms, more positive HLA typing, shorter mean sleep latency, and more sleep onset rapid eye movement periods. No significant change to the physical domains of SF-36 was found in the total group, but we observed significant changes in emotional role functioning and social function. The NT1 group showed significant improvements in physical role functioning, emotional role functioning, and social function. The NT2 group demonstrated significant improvements in emotional role functioning. At the baseline, the NT2 group had significantly better scores, but there was no significant group difference after treatment, except for physical and social function. ESS and VAS were significantly improved during follow-up. At the baseline, the NT1 group had significantly higher ESS and VAS scores, and continuously significantly higher ESS scores during follow-up. Narcolepsy types, HLA typing, age of onset, symptom severity, attention and vigilance were significantly correlated with SF-36.ConclusionSymptom control greatly associates with the quality of life in narcoleptic patients, and medication can play the most important role. Management targeting narcoleptic symptoms, attention impairment, and drug adherence should be provided.

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“…Patients with NT1 have cataplexy (sudden muscles weakness often triggered by strong emotions) and/or a low or unmeasurable hypocretin-1 level in cerebrospinal fluid (CSF), whereas those with NT2 do not have cataplexy and their CSF hypocretin level is > 110 pg/ mL or unmeasurable. Studies have revealed that those with narcolepsy not only have sleep or wake-related problems, such as hypersomnia and excessive daytime sleepiness, but also have poorer quality of life [15][16][17][18][19][20][21][22] and more physical and psychiatric comorbidities (e.g., obesity, sleep apnea, depression, and anxiety), than general population [23][24][25]. Other narcoleptic symptoms can result in considerable distress and increased vulnerability, including cataplexy, hypnogogic or hypnopompic hallucination (hallucinatory experience when falling asleep or waking up), sleep paralysis (the inability to move or speak when falling asleep or waking up), and disturbed nighttime sleep [26].…”

Section: Introductionmentioning

confidence: 99%

Impact of Taiwan’s 2021 COVID-19 lockdown on the symptom severity and quality of life of patients with narcolepsy

Chin

Huang

Tang

et al. 2023

Sleep Biol. Rhythms

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COVID-19 lockdowns can influence the sleep quality and daytime condition of patients with narcolepsy. Using data from our cohort study, we investigated changes in the quality of life and the symptom severity of patients with narcolepsy during Taiwan’s 2021 lockdown and investigated differences by narcolepsy subtype, sex, and age. Patients with type 1 and type 2 narcolepsy (NT1 and NT2, respectively) aged 6–40 years were retrospectively recruited from our narcolepsy cohort study. These patients were regularly evaluated using the Short Form 36 Health Survey questionnaire (SF-36), the Epworth Sleepiness Scale (ESS), the visual analog scale (VAS) for hypersomnolence, the VAS for cataplexy and sleep diary. We compared the differences between the lockdown and the prelockdown periods by narcolepsy subtype, sex, and age. We used a paired t test analysis to compare differences in the SF-36, ESS, VAS scores and data of sleep diary between the prelockdown and lockdown periods ( p 1), and an independent t test analysis was used to compare the changes in different subgroups between the prelockdown and lockdown periods ( p 2). A total of 120 patients with narcolepsy were recruited (mean age 24.22 ± 6.87 years; 58% male); 80 of the patients had NT1 (mean age 25.25 ± 6.79 years; 60% male) and 40 had NT2 (mean age 22.16 ± 6.64, 53% male). During the lockdown period, the ESS score of total patients was decreased ( p = 0.039) and body mass index was increased ( p = 0.02). The NT1 group decreased significantly ( p 1 = 0.017), especially in men ( p 1 = 0.016) and adults ( p 1 = 0.04); scores for the VT domain of the SF-36 increased significantly in male and adult patients with NT2 ( p 1 = 0.048 and 0.012). Additionally, male patients with NT2 exhibited significantly decreased scores in the physical and emotional role functioning domains ( p 1 = 0.028, 0.024). The children and adolescents with NT1 had significantly decreased scores in the general health domain of the SF-36, but no significant change was noted in that of adults ( p 1 = 0.027, p 2 = 0.012). We observed both negative and positive impacts of Taiwan’s 2021 lockdown on patients with narcolepsy. A more flexible but structured daily routine with adequate sleep time should be considered for this population during lockdown and nonlockdown periods.

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Health-related quality of life in patients with narcolepsy types 1 and 2 from a Sleep Center in Brazil

Cited by 4 publications

References 27 publications

Narcolepsy: an interface among neurology, immunology, sleep, and genetics

Narcolepsy: an interface among neurology, immunology, sleep, and genetics

Quality of life changes and their predictors in young adult narcolepsy patients after treatment: A real-world cohort study

Impact of Taiwan’s 2021 COVID-19 lockdown on the symptom severity and quality of life of patients with narcolepsy

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