Quality Measures for the Care of Patients with Narcolepsy (original) (raw)
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Measurement of narcolepsy symptoms: the narcolepsy severity scale
Sleep Medicine, 2017
Objective: Validation of the Narcolepsy Severity Scale (NSS), a brief clinical instrument to evaluate the severity and consequences of symptoms in patients with narcolepsy type 1 (NT1). Methods: A 15-item scale to assess the frequency and severity of excessive daytime sleepiness, cataplexy, hypnagogic hallucinations, sleep paralysis and disrupted nighttime sleep was developed and validated by sleep experts with patients' feedback. Seventy untreated and 146 treated adult patients with NT1 were evaluated and completed the NSS in a single reference sleep center. The NSS psychometric properties, score changes with treatment and convergent validity with other clinical parameters were assessed. Results: The NSS showed good psychometric properties with significant item-total score correlations. The factor analysis indicated a three-factor solution with good reliability, expressed by satisfactory Cronbach's α values. The NSS total score temporal stability was good. Significant NSS score differences were observed between untreated and treated patients (dependent sample: 41 patients before and after sleep therapy; independent sample: 29 drugfree and 105 treated patients). Scores were lower in the treated populations (10-point difference between groups), without ceiling effect. Significant correlations were found between NSS total score and daytime sleepiness (Epworth Sleepiness Scale, Mean Sleep Latency Test), depressive symptoms and health-related quality of life. Conclusions: The NSS can be considered a reliable and valid clinical tool for the quantification of narcolepsy symptoms to monitor and optimize narcolepsy management.
EFNS guidelines on management of narcolepsy
European Journal of Neurology, 2006
Management of narcolepsy with or without cataplexy relies on several classes of drugs, namely stimulants for excessive daytime sleepiness and irresistible episodes of sleep, antidepressants for cataplexy and hypnosedative drugs for disturbed nocturnal sleep. In addition, behavioral measures can be of notable value. Guidelines on the management of narcolepsy have already been published. However contemporary guidelines are necessary given the growing use of modafinil to treat excessive daytime sleepiness in Europe within the last 5-10 years, and the decreasing need for amphetamines and amphetaminelike stimulants; the extensive use of new antidepressants in the treatment of cataplexy, apart from consistent randomized placebo-controlled clinical trials; and the present reemergence of gamma-hydroxybutyrate under the name sodium oxybate, as a treatment of all major symptoms of narcolepsy. A task force composed of the leading specialists of narcolepsy in Europe has been appointed. This task force conducted an extensive review of pharmacological and behavioral trials available in the literature. All trials were analyzed according to their class evidence. Recommendations concerning the treatment of each single symptom of narcolepsy as well as general recommendations were made. Modafinil is the first-line pharmacological treatment of excessive daytime sleepiness and irresistible episodes of sleep in association with behavioral measures. However, based on several large randomized controlled trials showing the activity of sodium oxybate, not only on cataplexy but also on excessive daytime sleepiness and irresistible episodes of sleep, there is a growing practice in the USA to use it for the later indications. Given the availability of modafinil and methylphenidate, and the forseen registration of sodium oxybate for narcolepsy (including excessive daytime sleepiness, cataplexy, disturbed nocturnal sleep) in Europe, the place of other compounds will become fairly limited. Since its recent registration cataplexy sodium oxybate has now become the first-line treatment of cataplexy. Second-line treatments are antidepressants, either tricyclics or newer antidepressants, the later being increasingly used these past years despite few or no randomized placebo-controlled clinical trials. As for disturbed nocturnal sleep the best option is still hypnotics until sodium oxybate is registered for narcolepsy. The treatments used for narcolepsy, either pharmacological or behavioral, are diverse. However the quality of the published clinical evidences supporting them varies widely and studies comparing the efficacy of different substances are lacking. Several treatments are used on an empirical basis, specially antidepressants for cataplexy, due to the fact that these medications are already used widely in depressed patients, leaving little motivation from the manufacturers to investigate efficacy in relatively rare indications. Others, in particular the more recently developed substances, such as modafinil or sodium oxybate, are evaluated in large randomized placebo-controlled trials. Our objective was to reinforce the use of those drugs evaluated in randomized placebo-controlled trials and to reach a consensus, as much as possible, on the use of other available medications.
Cataplexy and excessive daytime sleep (EDS) are the common symptoms in the sleep disorder namely, narcolepsy. In this paper we give the brief description about, what is narcolepsy? How it is evenly found in both types of gender and at what age it starts to show up its symptoms? Apart from introduction and symptoms, Meditation for treatment of narcolepsy is also discussed. MSLT (Multiple sleep latency test) and MWT (Maintenance of wakefulness test) are the existing tests for measuring sleepiness. Sleep Latency (SL) is the main measures of sleepiness computed in these tests.
Exploring the Literature on Narcolepsy: Insights into the Sleep Disorder That Strikes during the Day
The objective of this literature review was to provide an up-to-date overview, and an analysis of the current knowledge on narcolepsy. A systematic search was conducted in different databases to identify relevant studies on various aspects of narcolepsy. The search terms included "narcolepsy," "excessive daytime sleepiness," "cataplexy," and related terms. The search was limited to studies published up until 2022. The initial screening of studies was performed based on titles and abstracts to identify potentially relevant articles. Full-text assessment was then conducted to determine the eligibility of each study for inclusion in the review. Studies were included if they provided information on the symptoms, classification, genetic aspects, impact on daily life, and gaps in knowledge regarding narcolepsy. The review reveals several important findings regarding narcolepsy: 1. the classification of narcolepsy - Type 1 narcolepsy, previously known as narco...
European guideline and expert statements on the management of narcolepsy in adults and children
Journal of Sleep Research, 2021
SummaryBackground and purposeNarcolepsy is an uncommon hypothalamic disorder of presumed autoimmune origin that usually requires lifelong treatment. This paper aims to provide evidence‐based guidelines for the management of narcolepsy in both adults and children.MethodsThe European Academy of Neurology (EAN), European Sleep Research Society (ESRS), and European Narcolepsy Network (EU‐NN) nominated a task force of 18 narcolepsy specialists. According to the EAN recommendations, 10 relevant clinical questions were formulated in PICO format. Following a systematic review of the literature (performed in Fall 2018 and updated in July 2020) recommendations were developed according to the GRADE approach.ResultsA total of 10,247 references were evaluated, 308 studies were assessed and 155 finally included. The main recommendations can be summarized as follows: (i) excessive daytime sleepiness (EDS) in adults–scheduled naps, modafinil, pitolisant, sodium oxybate (SXB), solriamfetol (all stro...
Prevalence and incidence of narcolepsy in a US health care claims database, 2008–2010
Sleep, 2019
Study ObjectivesTo determine the prevalence and incidence of narcolepsy using a large US health care claims database.MethodsThe Truven Health MarketScan Commercial Dissertation Database (THMCDD) was used to estimate prevalence and incidence of narcolepsy, with and without cataplexy, by age groups, gender, and region among patients under age 66 years with continuous enrollment for years 2008–2010. THMCDD contains health claims information for more than 18 million people. Prevalence was expressed as cases/100 000 persons. Average annual incidence (using varying criteria for latency between the diagnostic tests, polysomnograph coupled with multiple sleep latency test [MSLT], and the diagnosis) was expressed as new cases/100 000 persons/year.ResultsThere were 8 444 517 continuously enrolled patients and 6703 diagnosed with narcolepsy (prevalence overall: 79.4/100 000; without cataplexy: 65.4/100 000; with cataplexy: 14.0/100 000). On the basis of the three definitions of incidence, over...
Quality of life in patients with narcolepsy: a WHOQOL-bref study
Arquivos de Neuro-Psiquiatria, 2008
Objective: To evaluate the perception of Quality of Life (QL) in Brazilian patients with narcolepsy. Method: 40 adult patients aged between 20 and 72 years (mean=41.55; SD=14.50); (28 F; 12M), with the diagnosis of chronic narcolepsy were followed up at the outpatient clinic (Patient Group). The Control Group was composed of 40 adults. The instrument utilized was the World Health Organization Quality of Life (WHOQOL-BREF). Results: The two groups were homogeneous and no difference was found with regards to age, sex, and demographic characteristics. The perception of QL in physical, psychological and social domains showed lower scores in those patients with narcolepsy than in the control group (p<0.05). Concerning physical domain, all the aspects evaluated were significantly impaired, in patient group, including sleep satisfaction (p<0.001); energy for daily activities (p=0.039); capacity to perform activities (p=0.001); and capacity to work (p=0.001). Conclusion: The perception of QL showed severe impairment in patients with narcolepsy for physical, psychological and social domains.