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1.
Vaccine ; 40(23): 3150-3158, 2022 05 20.
Article in English | MEDLINE | ID: covidwho-1796041

ABSTRACT

BACKGROUND: The COVID-19 pandemic caused an abrupt drop in in-person health care (inpatient, Emergency Department, outpatient) and an increase in telehealth care, which poses challenges in vaccine safety studies that identify outcomes from in-person encounters. We examined the changes in incidence rates of selected encounter-based outcomes during the COVID-19 pandemic. METHODS: We assembled a cohort of members from 8 Vaccine Safety Datalink sites from January 1, 2017 through December 31, 2020. Using ICD-10 diagnosis codes or laboratory criteria, we identified 21 incident outcomes in traditional in-person settings and all settings. We defined 4 periods in 2020: January-February (pre-pandemic), April-June (early pandemic), July-September (middle pandemic), and October-December (late pandemic). We defined four corresponding periods in each year during 2017-2019. We calculated incidence rates, conducted difference in difference (DiD) analyses, and reported ratios of incidence rate ratios (RRR) to examine changes in rates from pre-pandemic to early, middle, and late pandemic in 2020, after adjusting for changes across similar periods in 2017-2019. RESULTS: Among > 10 million members, regardless of setting and after adjusting for changes during 2017-2019, we found that incidence rates of acute disseminated encephalomyelitis, encephalitis/myelitis/encephalomyelitis/meningoencephalitis, and thrombotic thrombocytopenic purpura did not significantly change from the pre-pandemic to early, middle or late pandemic periods (p-values ≥ 0.05). Incidence rates decreased from the pre-pandemic to early pandemic period during 2020 for acute myocardial infarction, anaphylaxis, appendicitis, Bell's palsy, convulsions/seizures, Guillain-Barré syndrome, immune thrombocytopenia (ITP), narcolepsy/cataplexy, hemorrhagic stroke, ischemic stroke, and venous thromboembolism (p-values < 0.05). Incidence rates of Bell's palsy, ITP, and narcolepsy/cataplexy were higher in all settings than in traditional in-person settings during the three pandemic periods (p-values < 0.05). CONCLUSION: Rates of some clinical outcomes during the pandemic changed and should not be used as historical background rates in vaccine safety studies. Inclusion of telehealth visits should be considered for vaccine studies involving Bell's palsy, ITP, and narcolepsy/cataplexy.


Subject(s)
Bell Palsy , COVID-19 , Cataplexy , Narcolepsy , Thrombocytopenia , Vaccines , COVID-19/epidemiology , COVID-19/prevention & control , Cataplexy/complications , Cataplexy/epidemiology , Humans , Incidence , Pandemics/prevention & control
2.
J Clin Sleep Med ; 17(4): 859-862, 2021 Apr 01.
Article in English | MEDLINE | ID: covidwho-1369894

ABSTRACT

NONE: Narcolepsy is a chronic neurological sleep disorder, debuting before age 15 years in one-third of patients. Narcolepsy has a negative influence on quality of life, with daily functioning being affected by concomitant cognitive, behavioral, and social problems. In December 2019, a new coronavirus emerged worldwide, causing the severe respiratory disease COVID-19. In the Netherlands, a partial lockdown was implemented that included the closure of schools. Here we present 3 illustrative case reports that teach important lessons for the treatment of pediatric narcolepsy. We observed significant consequences of the partial lockdown measures on daytime functioning, well-being, and school performance, both negative and positive. The consequences of the lockdown led to valuable insights for further treatment, substantiating the importance of personalizing education. Involvement of specialized student counselors, flexibility in the way that education is delivered, and enhancement of environmental factors could help in guiding young patients with narcolepsy through challenges at school.


Subject(s)
COVID-19 , Narcolepsy , Academic Performance , Adolescent , Child , Communicable Disease Control , Humans , Narcolepsy/complications , Netherlands , Quality of Life
3.
J Sleep Res ; 31(2): e13461, 2022 04.
Article in English | MEDLINE | ID: covidwho-1365092

ABSTRACT

The national lockdown imposed in several countries to counteract the coronavirus disease 2019 (COVID-19) pandemic led to an unprecedented situation with serious effects on mental health of the general population and of subjects affected by heterogeneous diseases. Considering the positive association between narcoleptic symptoms and creativity, we aimed at exploring the psychological distress associated with COVID-19 restrictions and its relationship with depressive symptoms and creativity in patients with narcolepsy type 1 (NT1). A total of 52 patients with NT1 and 50 healthy controls, who completed a previous study on creativity, were contacted during the first lockdown period to complete an online survey evaluating psychological distress related to the COVID-19 outbreak, sleep quality, narcolepsy and depressive symptoms, and creative abilities. The patients with NT1 showed an improvement in subjective sleepiness while controls reported worsening of sleep quality during the lockdown. Depression and NT1 symptom severity proved significant predictors of COVID-19-related distress. Creative performance, namely generative fluency, turned out to be a favourable moderator in the relationship between depression and patients' distress, reducing the detrimental effect of depression on the patients' wellbeing. On the contrary, creative originality proved to be a disadvantageous moderator in the relationship between NT1 symptom severity and the distress associated with this traumatic event indicating a higher vulnerability to developing COVID-19-related distress, particularly evident in patients displaying higher originality. Overall, these results highlight a crucial role of creativity in patients with NT1, suggesting that creative potential could be used as a protective factor against the development of distress associated with the lockdown.


Subject(s)
COVID-19 , Narcolepsy , Psychological Distress , Communicable Disease Control/methods , Depression/etiology , Humans , SARS-CoV-2
4.
J Clin Sleep Med ; 18(1): 255-263, 2022 01 01.
Article in English | MEDLINE | ID: covidwho-1328231

ABSTRACT

STUDY OBJECTIVES: To assess the impact of coronavirus disease 2019 (COVID-19)-related restrictions on narcolepsy type 1 (NT2), narcolepsy type 2 (NT2), and idiopathic hypersomnia (IH). METHODS: Participants with NT1, NT2, and IH followed in a university hospital completed an online 78-question survey assessing demographic, clinical, and occupational features of the population during the first COVID-19-related lockdown. RESULTS: A total of 219 of 851 (25.7%) respondents of the survey reported a mean increase of 1.2 ± 1.9 hours (P < .001) in night sleep time and a mean decrease of 1.0 ± 3.4 points (P < .001) on the Epworth Sleepiness Scale during lockdown. Bedtime was delayed by 46.1% of participants and wakeup time was delayed by 59.6%, driven primarily by participants with IH. Teleworkers (but not in-person workers) reported a mean increase of 0.9 ± 1.2 hours in night sleep (P < .001) and a mean decrease in sleepiness score of 1.6 ± 3.1 (P < .001). Cataplexy improved in 54.1% of participants with NT1. Sleepiness correlated with psychological wellness (r = .3, P < .001). As many as 42.5% enjoyed the lockdown, thanks to reallocation of time usually spent commuting toward longer sleep time, hobbies, and family time, and appreciated a freer napping schedule. Conversely, 13.2% disliked the lockdown, feeling isolation and psychological distress. CONCLUSIONS: Extended sleep time, circadian delay (in patients with IH), and teleworking resulted in decreased symptoms of central hypersomnias. These findings suggest that people with IH, NT1, and NT2 may benefit from a decrease in social and professional constraints on sleep-wake habits, and support advocacy efforts aimed at facilitating workplace and schedule accommodations for this population. CITATION: Nigam M, Hippolyte A, Dodet P, et al. Sleeping through a pandemic: impact of COVID-19-related restrictions on narcolepsy and idiopathic hypersomnia. J Clin Sleep Med. 2022;18(1):255-263.


Subject(s)
COVID-19 , Disorders of Excessive Somnolence , Idiopathic Hypersomnia , Narcolepsy , Communicable Disease Control , Disorders of Excessive Somnolence/epidemiology , Humans , Idiopathic Hypersomnia/complications , Idiopathic Hypersomnia/drug therapy , Idiopathic Hypersomnia/epidemiology , Narcolepsy/drug therapy , Narcolepsy/epidemiology , Pandemics , SARS-CoV-2 , Sleep
5.
J Sleep Res ; 31(1): e13423, 2022 02.
Article in English | MEDLINE | ID: covidwho-1280351

ABSTRACT

The lockdown due to the new coronavirus pandemic (COVID-19) has led to unparalleled changes in several aspects of human behaviour. During the lockdown, the general population delayed sleep timing and spent more time in bed; however, little is known on the effects of COVID-19 restriction on children and adolescents suffering type 1 narcolepsy. In the last months of 2019, we performed follow-up actigraphy in 18 type 1 narcolepsy children and adolescents under stable pharmacological treatment with sodium oxybate. We contacted these patients for a follow-up actigraphy during the first Italian lockdown. Actigraphs and the Epworth Sleepiness Scale for children and adolescents (ESS-CHAD) have been sent to participants' homes. Differences in motor activity were analysed through functional linear modelling. During lockdown, type 1 narcolepsy children and adolescents went to bed and woke up later, slept more during the daytime and napped more frequently. No difference emerged in time in bed, estimated total sleep time and nocturnal sleep quality. Similarly, no difference emerged in ESS-CHAD and body mass index. The time-series analysis of motor activity documented reduced activity during the early morning and in the evening during the lockdown period compared with pre-lockdown. Our study objectively showed that type 1 narcolepsy children and adolescents delayed the sleep phase and slept more during the daytime during the lockdown. The analysis of type 1 narcolepsy children and adolescents' behaviour during the lockdown has provided new information that could pave the way to a personalized school programme.


Subject(s)
COVID-19 , Narcolepsy , Adolescent , Child , Communicable Disease Control , Humans , Narcolepsy/drug therapy , SARS-CoV-2
6.
Respirology ; 26(7): 700-706, 2021 07.
Article in English | MEDLINE | ID: covidwho-1238471

ABSTRACT

Obstructive sleep apnoea (OSA) now affects one-seventh of the world's population. Treatment of even mild OSA can improve daytime sleepiness and quality of life. Recent modifications to uvulopalatopharyngoplasty may make it a more widely applicable treatment option in selected patients with OSA. Diet and exercise have effects on sleep apnoea severity independent of weight loss. Insomnia has become increasingly common during the coronavirus disease 2019 (COVID-19) pandemic.


Subject(s)
Sleep/physiology , COVID-19/epidemiology , COVID-19/physiopathology , Humans , Narcolepsy/epidemiology , Narcolepsy/physiopathology , Nocturnal Myoclonus Syndrome/epidemiology , Nocturnal Myoclonus Syndrome/physiopathology , Obesity Hypoventilation Syndrome/epidemiology , Obesity Hypoventilation Syndrome/physiopathology , Prevalence , Sleep Initiation and Maintenance Disorders/epidemiology , Sleep Initiation and Maintenance Disorders/physiopathology
8.
Brain Behav ; 11(1): e01955, 2021 01.
Article in English | MEDLINE | ID: covidwho-946962

ABSTRACT

STUDY OBJECTIVES: Narcolepsy type 1 (NT1) is a chronic rare hypersomnia of central origin requiring a combination of behavioral and pharmacological treatments. During the coronavirus disease 2019 (COVID-19) pandemic, in Italy the population was forced into a lockdown. With this study, we aimed to describe the lockdown impact on NT1 symptom management, according to different patients' working schedule. METHODS: In the period between 10 April and 15 May 2020, we performed routine follow-up visits by telephone (as recommended during the COVID-19 emergency) to 50 patients >18 years old (40% males) under stable long-term treatment. We divided patients into three groups: unchanged working schedule, forced working/studying at home, and those who lost their job ("lost occupation"). Current sleep-wake habit and symptom severity were compared with prelockdown assessment (six months before) in the three patient groups. RESULTS: At assessment, 20, 22, and eight patients belonged to the unchanged, working/studying at home, and lost occupation groups, respectively. While in the lost occupation group, there were no significant differences compared with prepandemic assessment, the patients with unchanged schedules reported more nocturnal awakenings, and NT1 patients working/studying at home showed an extension of nocturnal sleep time, more frequent daytime napping, improvement of daytime sleepiness, and a significant increase in their body mass index. Sleep-related paralysis/hallucinations, automatic behaviors, cataplexy, and disturbed nocturnal sleep did not differ. CONCLUSIONS: Narcolepsy type 1 patients working/studying at home intensified behavioral interventions (increased nocturnal sleep time and daytime napping) and ameliorated daytime sleepiness despite presenting with a slight, but significant, increase of weight.


Subject(s)
COVID-19/prevention & control , Employment/statistics & numerical data , Narcolepsy/therapy , Quarantine , Telemedicine/methods , Adult , Female , Humans , Italy , Male , Middle Aged , Narcolepsy/drug therapy , Pandemics , SARS-CoV-2 , Severity of Illness Index
9.
J Clin Sleep Med ; 17(4): 621-627, 2021 Apr 01.
Article in English | MEDLINE | ID: covidwho-895593

ABSTRACT

STUDY OBJECTIVES: To the best of our knowledge, there has not as yet been any study on the effects of the COVID-19 pandemic on patients with narcolepsy, in particular, in relation to its impact on sleep schedules, symptoms, the need for medication, work, income, and quality of life. This study therefore aimed to explore these factors and their possible influence on sleep, circadian timing, and narcolepsy symptoms during the pandemic. METHODS: Patients with narcolepsy who had been in quarantine for at least 3 months completed a 36-question online survey. Questions targeted the conditions of the quarantine, sleep-related behaviors, and factors known to affect sleep and circadian rhythms (work status, income, appetite, narcolepsy symptoms, and medication), as well as the quality of life during the quarantine period. RESULTS: The routines of the participants had been altered by quarantine, with changes in their place of work, and an increase in narcolepsy symptoms, such as cataplexy, sleep paralysis, hallucinations, nocturnal awakenings, and sleepiness. Sleep and wake times changed, resulting in altered sleep patterns in most of the sample. No association between changes in the place of work and narcolepsy symptoms was found. Regarding medication, the participants used fewer antidepressant pills but took more stimulants. Appetite was increased and self-reported quality of life decreased during the period. CONCLUSIONS: During the quarantine, the patients with narcolepsy reported changes in their bedtime and waking-up schedules, suggesting a tendency to circadian misalignment. In Brazil, the effects of the COVID-19 outbreak have gone beyond the direct action of the virus because of the collateral damage it has caused in respect to unemployment, financial hardship, and a reduction in quality of life. These impacts have been amplified in Brazil because of the level of social inequality found in the country, and they have particularly affected vulnerable patients with rare diseases, such as the narcolepsy population.


Subject(s)
COVID-19 , Narcolepsy/epidemiology , Brazil , Humans , Pandemics , Quality of Life , Quarantine , Sleep
10.
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