Narcolepsy: Comorbidities, complexities and future directions.

Patients with narcolepsy live with a lifelong sleep-wake disorder, impairing their quality of life, productivity, educational and employment outcomes. Clinicians are becoming aware that a significant aspect of the burden of this disease relates to frequent comorbid conditions, including aspects of the patient's emotional, metabolic, sleep and immune health. This review explores the literature describing the comorbidities seen in patients with narcolepsy, to enhance understanding of these often complex presentations. It hopes to encourage a multidisciplinary approach, to collaborate with patients and a broad clinical team, and to maximise clinical and quality of life outcomes, for those living with narcolepsy.

Prospective cohort study to evaluate the accuracy of sleep measurement by consumer-grade smart devices compared with polysomnography in a sleep disorders population.

OBJECTIVES: Consumer-grade smart devices are now commonly used by the public to measure waking activity and sleep. However, the ability of these devices to accurately measure sleep in clinical populations warrants more examination. The aim of the present study was to assess the accuracy of three consumer-grade sleep monitors compared with gold standard polysomnography (PSG). DESIGN: A prospective cohort study was performed. SETTING: Adults undergoing PSG for investigation of a suspected sleep disorder. PARTICIPANTS: 54 sleep-clinic patients were assessed using three consumer-grade sleep monitors (Jawbone UP3, ResMed S+ and Beddit) in addition to PSG. OUTCOMES: Jawbone UP3, ResMed S+ and Beddit were compared with gold standard in-laboratory PSG on four major sleep parameters-total sleep time (TST), sleep onset latency (SOL), wake after sleep onset (WASO) and sleep efficiency (SE). RESULTS: The accelerometer Jawbone UP3 was found to overestimate TST by 28 min (limits of agreement, LOA=-100.23 to 157.37), with reasonable agreement compared with gold standard for TST, WASO and SE. The doppler radar ResMed S+ device underestimated TST by 34 min (LOA=-257.06 to 188.34) and had poor absolute agreement compared with PSG for TST, SOL and SE. The mattress device, Beddit underestimated TST by 53 min (LOA=-238.79 to 132) on average and poor reliability compared with PSG for all measures except TST. High device synchronisation failure occurred, with 20% of recordings incomplete due to Bluetooth drop out and recording loss. CONCLUSION: Poor to moderate agreement was found between PSG and each of the tested devices, however, Jawbone UP3 had relatively better absolute agreement than other devices in sleep measurements compared with PSG. Consumer grade devices assessed do not have strong enough agreement with gold standard measurement to replace clinical evaluation and PSG sleep testing. The models tested here have been superseded and newer models may have increase accuracy and thus potentially powerful patient engagement tools for long-term sleep measurement.

Validation of the self-administered version of the international Restless Legs Syndrome study group severity rating scale - The sIRLS.

INTRODUCTION: The International Restless Legs Study Group (IRLSSG) has developed the IRLS (International Restless Legs Syndrome Severity Scale) and validated it as a clinician/researcher administered scale to be used when both patient and examiner are present. The IRLSSG recognized the need for a self-completing scale that can be used economically in clinical practice and in large population-based studies. In this study the validity and the reliability of the IRLS as a self-administered scale (sIRLS) is assessed. METHODS: Established RLS patients were recruited by eight centers in four countries and consented to participate in this study. The validity of the sIRLS was assessed by patients completing the sIRLS before a clinician administered the IRLS. The reliability of the sIRLS was assessed by patients completing the sIRLS again, two weeks after the first one, provided no change had occurred. RESULTS: Overall, 173 patients were recruited and 164 of them were included in the analyses. The sIRLS showed satisfactory scaling assumptions and no relevant floor or ceiling effect. One factor explained 61.3% of the variance. Cronbach's alpha was 0.93 and the item homogeneity index was 0.59. Intraclass correlation coefficient between the sIRLS and the IRLS was 0.94. The sIRLS standard error of measurement was 3.61 (½ SD at baseline = 4.11). The results mostly overlapped those of the IRLS analyzed in parallel. DISCUSSION: The sIRLS is a reliable, valid and precise instrument that showed tight association with the IRLS. These findings support the use of the sIRLS for self-evaluation of RLS severity. The responses obtained on the sIRLS and the IRLS scale varied slightly. Therefore, we recommend that either the sIRLS or the IRLS scale be used as the only scale for serial measures over time.

The DSM-5 Self-Rated Level 1 Cross-Cutting Symptom Measure identifies high levels of coexistent psychiatric symptomatology in patients referred for insomnia treatment.

PURPOSE: Referrals to sleep psychology services, even for a perceived single problem such as insomnia, can present with complex, coexistent psychiatric symptoms and comorbid disorders. This study aimed to assess the feasibility of implementing the DSM-5 Self-Rated Level 1 Cross-Cutting Symptom Measure (CCSM) into a sleep psychology clinic to identify coexistent psychiatric symptomatology in insomnia referrals. PATIENTS AND METHODS: Patients were 50 consecutive referrals to a private sleep psychology service within a sleep disorders center in Melbourne, Australia. Patients who attended sleep psychology services between June 2015 and January 2017 had their clinical records reviewed. Basic demographic information, comorbidities, and responses to the Insomnia Severity Index were gathered. The Diagnostic and Statistical Manual of Mental Disorders Ed. 5 Task Force and Work Groups created the CCSM in 2013 to deal with the issue of coexistent psychiatric symptomatology across mental health conditions, and this measure was included into the sleep psychology intake procedure and patient responses were reviewed. RESULTS: The CCSM was simple and quick to administer and score and revealed high levels of psychiatric symptomatology in sleep psychology referrals. Sleep problems were the most common domain of psychiatric symptomatology reported (86%). Anxiety (66%), depression (64%), anger (64%), and somatic symptoms (50%) were also very common. Suicidal ideation was acknowledged by 26% of patients. In addition, 82% of patients had at least one diagnosed comorbidity upon referral (eg, psychiatric, physical health, or other sleep disorder). CONCLUSION: The findings support the CCSM as a feasible measure for identifying the high levels of coexistent psychiatric symptomatology in patients presenting for insomnia treatment at sleep psychology services.

User Compliance and Behavioral Adaptation Associated With Supine Avoidance Therapy.

This study investigates behavioral adaptation to vibrotactile position-avoidance therapy during sleep in patients with obstructive sleep apnea (n =135) across 15 to 52 weeks. The overall compliance, based on nights used ≥ 4 hr, was 71%. Overall regular use, that is, ≥ 4 hr/night over 70% of nights, was 88%. Poor early compliance strongly predicted poor long-term treatment adherence, with 92% of those noncompliant across the first 12 weeks of therapy remaining noncompliant. Conversely, 21% of those with compliant utilization in the short term became noncompliant in the long term. It appears that patients do not habituate to the stimulus during sleep, nor was there a training effect associated with long-term use.

The management, privacy and medico-legal issues of electronic CPAP data in Australia and New Zealand: Electronic CPAP data management in Australia and New Zealand.

STUDY OBJECTIVE: Continuous Positive Airway Pressure (CPAP) is considered to be the gold standard treatment for obstructive sleep apnoea (OSA). CPAP monitoring systems allow tracking of patient CPAP adherence and treatment efficacy, by measuring residual sleep-disordered breathing, hours of CPAP use, and mask leak etc. The American Thoracic Society (ATS) published a position paper in 2013 highlighting issues of interpreting CPAP data such as a lack of consistency between CPAP manufacturers data algorithms, legal implications of CPAP data and implications for CPAP adherence. This paper extends on this work by investigating these issues in an Australasian context. METHOD: A review of current literature on CPAP monitoring systems, privacy and security of CPAP data for major Australasian CPAP providers, and CPAP adherence was undertaken. A legal review was also commissioned for issues related to privacy and security of CPAP data. RESULTS: CPAP manufacturers' utilize different algorithms for respiratory event detection and clinicians need to be aware the implications for interpreting CPAP data. Australasian CPAP manufacturers have created security/privacy policies with the intent to follow relevant legislation to protect patients' CPAP data, however they do need to be constantly reviewed and updated to avoid data breaches and changes to agreements. No guarantees can be provided by the Australasian Sleep Association on CPAP manufacturers' compliance with these policies and there is the potential for some degree of liability for physicians and CPAP providers associated with CPAP data. Lastly, providing patients with feedback on their CPAP usage and OSA management appears to have positive influence CPAP adherence. CONCLUSIONS: CPAP data provides many opportunities to increase OSA patient care and to help patients self-manage this chronic condition. However, issues relating to lack of standardization of CPAP parameters, privacy, security, and legal implications will need to be managed in this changing technologic and clinical environment.

The emergence of devastating impulse control disorders during dopamine agonist therapy of the restless legs syndrome.

INTRODUCTION: The Restless Legs Syndrome is a common sensorimotor disorder, typically amenable to treatment with dopamine agonist therapy. Dopamine agonists have been associated with emergent impulse control disorders (ICDs) when used in patients with Parkinson disease, and ICDs have now been reported in individuals with RLS on dopamine agonist therapy. Our aim was to characterize cases of emergent ICDs in Australian patients with focus on the dopamine agonists implicated and the social significance of ICDs. METHOD: A series of RLS patients on dopamine agonist therapy were identified with ICDs over a 2-year period. Additional cases of ICDs were found using a mailout questionnaire designed to capture those with high impulsivity. These patients were assessed using the Barratt Impulsiveness Scale, Version 11, and a modified Minnesota Impulse Disorders Interview. Case records and medication schedules were evaluated. RESULTS: Twelve cases of patients with de novo ICDs were found with a range of impulsive behaviors including pathological gambling, kleptomania, compulsive shopping, and hypersexuality. Criminality, suicidality, and marital discord also were featured. These occurred over a wide range of latencies and l-dopa exposures. DISCUSSION: This group of Australian RLS patients with ICDs display high levels of impulsivity and is the first to use the BIS-11 questionnaire in this setting. Impulse control disorders can occur over a wide range of dopamine agonist therapy types and dose exposures. Impulse control disorder tendencies may persist, despite withdrawal of dopamine agonists. The emergence of ICDs needs careful consideration in light of their potentially devastating financial, social, and marital consequences.