In honor of World Sleep Day, held March 17, 2023, get caught up on some of the latest news in sleep disorders as the NeurologyLive® team shares some of our data updates.
In recent months, the NeurologyLive® team has been covering the news on the latest updates in the clinical care of individuals with neuromuscular disorders, multiple sclerosis, movement disorders, sleep disorders, and more. For our coverage of sleep disorders, our team has spoken with several experts and highlighted various clinical findings relevant for the populations of patients with disorders such as narcolepsy, insomnia, cataplexy, and many others.
For World Sleep Day—celebrated on March 17, 2023—the team has culminated some of the biggest pieces of news to offer updates on new developments in the literature of sleep medicine to spread awareness on the prevention and treatment of sleep disorders.
A recently published study (NCT05375890) in the Journal of Clinical Sleep Medicine showed nonsignificant differences in clinical and neuropsychological data in the Russian Narcolepsy Network (RN-NN) relative to that previously reported in the European Narcolepsy Network (EU-NN).1 The findings showed more severe and higher percentages of patients who experience cataplexy in Russia, suggesting a low awareness of narcolepsy.
Comparing data with the EU-NN,2 the RN-NN had fewer patients with excessive daytime sleepiness (EDS) as a first symptom (25.6% vs 43.8%; P = .0014), whereas the percentage of both EDS and cataplexy as a first symptom was almost twice as high as in the EU-NN data (67.4% vs 48.8; P = .0013). Notably, the prevalence of severe cataplexy cases was higher in the RN-NN than in the EU-NN data (93.8% [n = 80] vs 62.6% [n = 829] in EU-NN; P = .001).
Sleep paralysis (59.1%, n = 88) and hallucinations (82.0%, n = 89; P = .0017) were present in the RN-NN more often than in the European cohort (52.6% [n = 257] and 63.1% [n = 370], respectively). Data with polysomnography and mean sleep latency test (MSLT) in RN-NN are similar, although observed MSLT scores (4.9 [±2.9] minutes [n = 52] vs 3.9 ± 3.0 minutes [n = 927]; P = .0193) were as higher in the Russian cohort.
In an exploratory study recently published in the Journal of Clinical Sleep Medicine, findings revealed an overarching theme that adolescents and their parents experience difficulty in trying to balance narcolepsy symptom management with meaningful social engagement.3 In the study, symptoms of daytime fatigue and cataplexy were the most significant and commonly discussed among adolescents and their parents as having an impact on social relationships.
Notably, adolescents reported feeling frustrated by their sleep disorder impacting their social lives such as constantly needing to plan ahead with their sleep schedule. Additionally, both adolescents and their parents expressed the need for medical providers to better understand their changing priorities, validate social limitations, and offer more information around the social implications of condition and treatment.
Adolescents between the ages of 12 and 17 years old with narcolepsy and their parents completed a semistructured interview individually between July 2021 and December 2021. Participants were included if they had a confirmed diagnosis of narcolepsy type 1 (n = 12; 85.7%) or type 2 (n = 2; 14.3%) using polysomnography/MSLT or other testing and were fluent in English. Data records were extracted, based on their narcolepsy medication plan and Epworth Sleepiness Scale (ESS) score 3 months before the interview date, from Boston Children’s Hospital. Of note, 3 patients had a medical record from outside the hospital. Interview transcripts were analyzed using a multistage thematic analysis.
Solriamfetol (Sunosi; Axsome Therapeutics), an FDA-approved medication for EDS, is typically initiated at 75 mg/day, with titration common, according to the SURWEY study assessing real-world physician strategies.4 Following initiation, patients experienced improvements in ESS scores, and most patients perceived improvement in their EDS status.
The most common starting doses overall were 75 mg/day (69%) or 150 mg/day (20%), with most of the remaining patients initiated at 37.5 mg. Almost half (43%) of patients had their treatment titrated, with 90% completing titration as prescribed. Titration was most commonly completed within 7 days (57%). For patients who changed treatment, switching to solriamfetol was managed using an abrupt approach for 88% of patients, an overlapping (tapered) approach for 9% of patients, and an unknown approach for 2% of patients.
Retrospective chart reviews from 70 German adults with EDS and narcolepsy were collected by investigators, with patients classified as either changeover (n = 43; 61%), add-on (n = 19; 27%), or new-to-therapy (n = 8; 11%) subgroups, based on existing EDS treatment. The mean age of the cohort was 36.9 (±13.9) years and mean body mass index was 26.7 (SD, 5.2) kg/m. More than half (57%) had cataplexy, and most (84%) were treated in sleep centers.
Findings from a small-scale, longitudinal study assessing patients with narcolepsy with cataplexy (NT1) showed that after 3 years of treatment with low to medium doses of sodium oxybate, there were significant differences in sleep structure and an increase in comorbidities that led to drug withdrawal.5
To the study authors knowledge, this was the longest recorded trial evaluating the effect of sodium oxybate on sleep architecture and comorbidity with video-polysomnography. The trial featured 23 adults with NT1 who were treated with an initial nocturnal dose of 4.5 g of sodium oxybate, with sleep parameters compared after 6 months (FU-1), 1 year (FU-2), and 3 years (FU-3) of uninterrupted treatment.
Findings on video polysomnography showed an increase in stage N3 in the first sleep cycle and a REM-onset in 90% of patients after the administration of the first dose. When comparing the time spent in the different sleep stages between FU-1 and FU-2, patients increased the time spent in stage N2 (z = –2.17; P = .03). At FU-3, there was a significant increased observed in the time spent in stage N1 (z = –2.09; P = .03). Furthermore the time spent in stages N1 and N2 were significantly longer in the latest follow-up than at FU-1 (z = –2.36; P = .001).
Findings from a recent survey of 254 German patients with narcolepsy showed that biologically based therapies were the most frequently used in complementary and alternative medicine (CAM) subgroups (76%); however, their impact is limited. While on these medications, patients still felt the need to improve their symptoms, sleepiness, and psychological well being.6
Among 33% of CAM users (n = 84), vitamins/trace elements (54%), homoeopathy (48%) and meditation (39%) were used most frequently. Fifty-four users (64%) described CAM as helpful. CAM users more frequently reported side effects from previous medication (P = .001). Notably, CAM users reported more frequently not complying with pharmacological treatment than nonCAM users (21% vs. 8%; P = .024).
Once a week or more, 75% of CAM users utilized CAM and whereas only 23% of users did only once a month or more. Twenty-three percent of patients who did not take any conventional pharmacological treatment prior (n = 38) reported current CAM use. Twenty-seven percent of patients used both conventional medicine and CAM at the same time (n =69). Among those who reported past or present CAM use, 73% reported having automatic behavior (n = 61 vs. n = 97 nonCAM users), 68% reported hypnagogic/hypnopompic hallucinations (n = 57 vs. n = 91 nonCAM users), and 70% reported nightmares (n = 59 vs. n = 97 nonCAM users).