Quality of life in patients with narcolepsy: a WHOQOL-bref study

Objectives: Narcolepsy is a disabling disease with a delayed diagnosis. At least 3 years before the disorder identifi cation, several comorbidities can be observed in patients with narcolepsy. The early recognition of narcolepsy symptoms may improve long-term prognosis of the patients. Thus, we aimed to investigate the prevalence of the symptoms associated with narcolepsy and its social and psychological association in a sample of Sao Paulo city inhabitants. Methods: We performed a cross-sectional evaluation with 1,008 individuals from the Sao Paulo Epidemiologic Sleep Study (EPISONO). Excessive daytime sleepiness (EDS) was assessed by the Epworth Sleepiness Scale. Volunteers were also asked about the occurrence of cataplectic-like, hypnagogic or hypnopompic hallucinations, and sleep paralysis symptoms. The participants underwent a full-night polysomnography and completed questionnaires about psychological, demographic, and quality of life parameters. Results: We observed a prevalence of 39.2% of EDS, 15.0% of cataplectic-like symptom, 9.2% of hypnagogic or hypnopompic hallucinations, and 14.9% of sleep paralysis in Sao Paulo city inhabitants. A frequency of 6.9% was observed when EDS and cataplectic-like symptoms were grouped. The other associations were EDS + hallucinations (4.7%) and EDS + sleep paralysis (7.5%). Symptomatic participants were predominantly women and younger compared with patients without any narcolepsy symptom (n = 451). Narcolepsy symptomatology was also associated with a poor quality of life and symptoms of depression, anxiety, and fatigue. Conclusions: Narcolepsy-related symptoms are associated with poor quality of life and worse psychological parameters. A lthough narcolepsy may be considered a rare neurological condition, the repercussions of this disorder are substantial. Narcolepsy induces a 1.5-fold increase in the mortality rate compared with healthy individuals.1 As a consequence, narcoleptic patients have approximately 2-fold increased rates of hospital or other medical services admissions.2 Narcolepsy is often associated with a tetrad of symptoms, including, excessive daytime sleepiness (EDS), hypnagogic or hypnopompic hallucinations, sleep paralysis, and cataplexy. EDS is the most frequent symptom observed in narcoleptic patients. 3 In the natural history of EDS, several cardiometabolic and psychiatric conditions are associated with the incidence and persistence of EDS. 4 Patients with narcolepsy experience the symptoms over a long period until receiving the defi nitive diagnosis, ranging between 10 and 15 years. 5,6 A possible factor associated with this delay could be the failure to recognize the characteristic clinical features.7 Indeed, Jennum et al. demonstrated that narcoleptic patients present a wide range of comorbidities at least 3 years before the narcolepsy diagnosis, including a higher frequency of neurological diseases and other sleep disorders. 8 The recognition of the symptoms associated with narcolepsy seems to be an important approach for a better long-term progn...

Section: Discussionmentioning

confidence: 99%

Frequencies and Associations of Narcolepsy-Related Symptoms: A Cross-Sectional Study

Kim

Coelho

Hirotsu

et al. 2015

“…Thus, a total of 21 studies met the inclusion criteria ( Table 2). 14,[19][20][21][22][23][24][25][26][27][28][29][30][31][32][33][34][35][36][37][38] …”

Section: Literature Search Methodologymentioning

confidence: 99%

“…ing sleep. The database characterizing such sleep patterns is limited but consistent, with patients reporting frequent awakenings after sleep onset and poor sleep quality, 22,31,[33][34][35]38 although only 3 studies provided a quantitative comparison of nocturnal awakenings (Table 3).…”

Section: Nighttime Sleep In Narcolepsymentioning

confidence: 99%

“…3,[5][6][7]10 In one study using the World Health Organization QOL (WHOQOL-BREF) instrument, Rovere et al compared QOL among 40 patients with narcolepsy and 40 normal controls with fixed daytime work schedules and no history of chronic diseases or sleep disorders. 34 Dissatisfaction with sleep was common among patients with narcolepsy, with 22.5% being very unsatisfied and 45.0% unsatisfied. Among normal controls, the rates were 2.5% Excluded, n = 620 (reviews, description/evaluation of sleeprelated comorbidities, lack of PSG or patient-reported data)…”

mentioning

confidence: 99%

See 1 more Smart Citation

Disrupted Nighttime Sleep in Narcolepsy

Roth

Dauvilliers

Mignot

et al. 2013

165

“…3,4 Numerous studies have found health-related quality of life (HRQoL) among narcolepsy patients to be significantly impaired in comparison with healthy controls or the general population. [5][6][7][8][9][10][11][12][13][14] Patients are impaired on several domains of HRQoL including mood, psychopathology, and other areas such as marital and work problems. [5][6][7][8][9][10][11][12][13][14] Narcolepsy has been associated with a negative impact on work productivity including increased unemployment, 15 early retirement, 16 accidents at work, 5 welfare enrollment, 11 time missed from work, general impairment at work, 8 and lower wages.…”

Section: Introductionmentioning

confidence: 99%

The Humanistic and Economic Burden of Narcolepsy

Flores

Villa

Black

et al. 2016

Study Objectives: To evaluate the burden of narcolepsy--with respect to psychiatric comorbidities, Health-Related Quality of Life (HRQoL), direct costs for healthcare resource utilization, and indirect costs for reported work loss-through comparison of patients to matched controls. Methods: This analysis was conducted on data from the NHWS n = 75,000, 2012 NHWS n = 71,157, and 2013. Patients who reported a narcolepsy diagnosis (n = 437) were matched 1:2 with controls (n = 874) on age, sex, race/ethnicity, marital status, education, household income, body mass index, smoking status, alcohol use, exercise, and physical comorbidity. Chi-square tests and one-way analyses of variance were used to assess whether the narcolepsy and control groups differed on psychiatric comorbidities, HRQoL, labor force participation, work productivity, and healthcare resource utilization. Results: Patients with narcolepsy, in comparison to matched controls, reported substantially (two to four times) greater psychiatric comorbidity, HRQoL impairment, prevalence of long-term disability, absenteeism, and presenteeism, and greater resource use in the past 6 mo as indicated by higher mean number of hospitalizations, emergency department visits, traditional healthcare professional visits, neurologist visits, and psychiatrist visits (each p < 0.05). Conclusions: These population-based data suggest that a narcolepsy diagnosis is associated with substantial adverse impact on mental health, HRQoL, and key economic burdens that include work impairment, resource use, and both direct and indirect costs. Although this study is cross-sectional, the results highlight the magnitude of the potential opportunity to improve mental health, lower costs, and augment work-related productivity through effective assessment and treatment of narcolepsy. I NTRO DUCTI O NNarcolepsy is a chronic disorder characterized by excessive daytime sleepiness that can be associated with significant effect on quality of life and disability. Narcolepsy is also associated with obesity, nighttime sleep disturbances, and functional impairment.1,2 Narcolepsy typically presents during teenage years or young adulthood and persists through adulthood. Prevalence estimates range between 25 and 50 per 100,000 people. 3,4 Numerous studies have found health-related quality of life (HRQoL) among narcolepsy patients to be significantly impaired in comparison with healthy controls or the general population. [5][6][7][8][9][10][11][12][13][14] Patients are impaired on several domains of HRQoL including mood, psychopathology, and other areas such as marital and work problems.5-14 Narcolepsy has been associated with a negative impact on work productivity including increased unemployment, 15