Are there sleep-specific phenotypes in patients with chronic fatigue syndrome? A cross-sectional polysomnography analysis

Objectives: Despite sleep disturbances being a central complaint in patients with chronic fatigue syndrome (CFS), evidence of objective sleep abnormalities from over 30 studies is inconsistent. The present study aimed to identify whether sleep-specific phenotypes exist in CFS and explore objective characteristics that could differentiate phenotypes, while also being relevant to routine clinical practice. Design: A cross-sectional, single-site study. Setting: A fatigue clinic in the Netherlands. Participants: A consecutive series of 343 patients meeting the criteria for CFS, according to the Fukuda definition. Measures: Patients underwent a single night of polysomnography (all-night recording of EEG, electromyography, electrooculography, ECG and respiration) that was hand-scored by a researcher blind to diagnosis and patient history. Results: Of the 343 patients, 104 (30.3%) were identified with a Primary Sleep Disorder explaining their diagnosis. A hierarchical cluster analysis on the remaining 239 patients resulted in four sleep phenotypes being identified at saturation. Of the 239 patients, 89.1% met quantitative criteria for at least one objective sleep problem. A one-way analysis of variance confirmed distinct sleep profiles for each sleep phenotype. Relatively longer sleep onset latencies, longer Rapid Eye Movement (REM) latencies and smaller percentages of both stage 2 and REM characterised the first phenotype. The second phenotype was characterised by more frequent arousals per hour. The third phenotype was characterised by a longer Total Sleep Time, shorter REM Latencies, and a higher percentage of REM and lower percentage of wake time. The final phenotype had the shortest Total Sleep Time and the highest percentage of wake time and wake after sleep onset. Conclusions: The results highlight the need to routinely screen for Primary Sleep Disorders in clinical practice and tailor sleep interventions, based on phenotype, to patients presenting with CFS. The results are discussed in terms of matching patients’ self-reported sleep to these phenotypes in clinical practice

The Association between Daytime Napping and Cognitive Functioning in Chronic Fatigue Syndrome

OBJECTIVES The precise relationship between sleep and physical and mental functioning in chronic fatigue syndrome (CFS) has not been examined directly, nor has the impact of daytime napping. This study aimed to examine self-reported sleep in patients with CFS and explore whether sleep quality and daytime napping, specific patient characteristics (gender, illness length) and levels of anxiety and depression, predicted daytime fatigue severity, levels of daytime sleepiness and cognitive functioning, all key dimensions of the illness experience. METHODS 118 adults meeting the 1994 CDC case criteria for CFS completed a standardised sleep diary over 14 days. Momentary functional assessments of fatigue, sleepiness, cognition and mood were completed by patients as part of usual care. Levels of daytime functioning and disability were quantified using symptom assessment tools, measuring fatigue (Chalder Fatigue Scale), sleepiness (Epworth Sleepiness Scale), cognitive functioning (Trail Making Test, Cognitive Failures Questionnaire), and mood (Hospital Anxiety and Depression Scale). RESULTS Hierarchical Regressions demonstrated that a shorter time since diagnosis, higher depression and longer wake time after sleep onset predicted 23.4% of the variance in fatigue severity (p <.001). Being male, higher depression and more afternoon naps predicted 25.6% of the variance in objective cognitive dysfunction (p <.001). Higher anxiety and depression and morning napping predicted 32.2% of the variance in subjective cognitive dysfunction (p <.001). When patients were classified into groups of mild and moderate sleepiness, those with longer daytime naps, those who mainly napped in the afternoon, and those with higher levels of anxiety, were more likely to be in the moderately sleepy group. CONCLUSIONS Napping, particularly in the afternoon is associated with poorer cognitive functioning and more daytime sleepiness in CFS. These findings have clinical implications for symptom management strategies

Cognitive stimulation therapy in dementia care: exploring the views and experiences of service providers on the barriers and facilitators to implementation in practice using Normalization Process Theory

Background:&nbsp;Cognitive stimulation therapy (CST) is an evidence-based, cost-effective psychosocial intervention for people with dementia but is currently not a standard part of post-diagnostic care. This qualitative study explored the views and experiences of dementia care providers on the barriers and facilitators to its implementation in usual care.&nbsp; Method:&nbsp;Thirty four semi-structured interviews (24 participants) were conducted across four dementia care sites in the North of England; ten were follow-up interviews. Data were analyzed using thematic analysis and then mapped to the Normalization Process Theory framework.&nbsp; Results:&nbsp;Participants considered CST a &ldquo;good fit&rdquo; with their &ldquo;preferred&rdquo; ways of working and goals of dementia care namely the provision of person-centered services. For facilitators delivering the intervention, compared to other behavioral interventions, CST was seen to offer benefits to their work and was easy to understand as an intervention. Training in CST and seeing benefits for clients were important motivators. Time and resources were crucial for the successful implementation of CST. Participants were keen to objectively measure benefits to participants but unsure how to do this.&nbsp; Conclusions:&nbsp;CST is a cost-effective psychosocial intervention for people with dementia, recommended by national guidance. Despite our findings which show that, using the NPT framework, there are more facilitators than barriers to the implementation of CST, it is still not a standard part of post-diagnostic dementia care. Further research is needed to explore the reasons for this implementation gap in ensuring evidence-based care in translated into practice

A concept mapping study evaluating the UK's first NHS generic fatigue clinic.

Importance - Fatigue is a significant and debilitating symptom affecting 25% of the population. It occurs in those with a range of chronic diseases, can be idiopathic and in 0.2-0.4% of the UK population occurs in combination with other symptoms that together constitute chronic fatigue syndrome (CFS). Until recently, NHS clinical services only focussed upon CFS and excluded the majority of fatigued patients who did not meet the CFS diagnostic criteria. The CRESTA Fatigue interdisciplinary clinic was established in 2013 in response to this unmet need. Objective - To identify the service needs of the heterogeneous group of patients accessing the CRESTA Fatigue Clinic, to prioritize these needs, to determine whether each is being met and to plan targeted service enhancements. Design - Using a group concept mapping approach, we objectively identified the shared understanding of service users accessing this novel clinic. Setting - NHS Clinics for Research & Service in Themed Assessment (CRESTA) Fatigue Clinic, Newcastle Upon Tyne, UK. Participants - Patients (n = 30) and referrers (n = 10) to the CRESTA Fatigue Clinic contributed towards a statement generation exercise to identify ways the clinic could support service users to improve their quality of life. Patients (n = 46) participated in the sorting and rating task where resulting statements were sorted into groups similar in meaning and rated for 'importance' and 'current success'. Main outcome and measure - We mapped the needs of patients attending the CRESTA Fatigue Clinic and identified which high-priority needs were being successfully met and which were not. Results - Multidimensional scaling and hierarchical cluster analysis depicted the following eight themed clusters from the data which related to various service-user requirements: 'clinic ethos', 'communication', 'support to self-manage', 'peer support', 'allied health services', 'telemedicine', 'written information' and 'service operation'. Service improvement targets were identified within value bivariate plots of the statements. Conclusion and relevance - Service development concepts were grouped into thematic clusters and prioritized for both importance and current success. The resulting concept maps depict where the CRESTA Fatigue Clinic successfully addresses issues which matter to patients and highlights areas for service enhancement. Unmet needs of patients have been identified in a rigorous service evaluation, and these are currently being addressed in collaboration with a service-user group

Commissioning care for people with dementia at the end of life: a mixed methods study.

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/ The version of record, Zoe M Gotts, Nicole Baur, Emma McLellan, Claire Goodman, Louise Robinson and Richard P Lee, ‘Commissioning care for people with dementia at the end of life: a mixed methods study’, BMJ Open, 2016,; 6: e013554, is available online at doi: 10.1136/ bmjopen-2016-013554Objectives To understand how end of life care for people with dementia is currently commissioned (.e contracted)and organised, with a view to informing the development of commissioning guidance for good quality community-based end of life care in dementia. Design Mixed-methods study; narrative review and qualitative interviews. Setting 8 NHS clinical commissioning groups and 5 Adult Services across England. Methods Narrative review of evidence; 20 semi structured interviews (telephone and face-to-face) with professionals involved in commissioning end of life care for people with dementia. Main outcome measures Summary of the existing evidence base for commissioning, commissioners’ approaches to the commissioning process for end of life care for people with dementia in England. Results In the context of commissioning end of life care for people with dementia, the literature review generated three key themes; (1) importance of joint commissioning; (2) lack of clarity for the process; and (3) factors influencing commissioning. In exploring health professionals’ perceptions of the commissioning process, ‘uncertainty’ was elicited as an overarching theme across the CCGs interviewed. Organisation of the process, lack of expertise, issues surrounding integration and the art of specification were considered important factors that contribute to the uncertainty surrounding the commissioning process. Conclusions The current evidence base for commissioning end of life care is limited with considerable uncertainty as how clinical commissioners in England undertake the process to ensure future services are evidence-based. Strengths and limitations of this study • The use of a multimethod approach (narrative review, qualitative interviews) allowed for triangulation of our findings. • The evidence indentified in the review may be limited given that ‘commissioning’ is a relatively new term in England. • The review presented is a narrative review; the manuscripts were not subject to a quality assessment process. • Generalisability of findings might be affected by the small number of published studies, their heterogeneity in methodologies, and small sample sizes. • The study highlights that information on commissioning specifically for health and social care in England is limited; this is mirrored in commissioners’ accounts.Peer reviewe

Exploration of potential objective and subjective daily indicators of sleep health in normal sleepers

Purpose: While the concept of "sleep health" has only recently been defined, how it relates to both subjective and objective sleep parameters is yet to be determined. The current study aimed to identify potential indicators of poorer sleep health, from subjective and objective daily sleep characteristics, in normal sleepers. Participants and methods: Eighty-three individuals aged 18-65 years with no history of sleep disorders, chronic physical or psychiatric illnesses, or substance misuse were recruited from the North of England. Secondary analysis of a series of standardized studies, which included psychometrics, actigraphy, and an in-lab polysomnography (PSG) component, was undertaken. Questions from several psychometric sleep scales were combined to create an aggregate measure of sleep health status. Subjective sleep continuity was assessed by 2-week sleep diary. Objective measures comprised two continuous weeks of actigraphy and two nights of in-lab PSG. Results: Significant negative correlations were evident between sleep health scores and both diary-derived subjective sleep latency (SL; diary) and actigraphy-derived SL (actigraphy). This was reflected by independent samples t-test between high and low sleep health groups. No relationships between sleep health and PSG parameters were observed. Regression analyses indicated sleep latencies from both the sleep diary and actigraphy as significant predictors, explaining 28.2% of the variance in sleep health. Conclusion: Perceived increases in SL appear to be a primary indicator of declining sleep health in normal sleepers. The majority of objective sleep parameters, including gross PSG sleep parameters, appear not to be sensitive to sleep health status in normal sleepers. Future research is needed to understand the physical and psychological correlates of sleep health in larger samples

An investigation into the prevalence of sleep disturbances in primary Sjögren’s syndrome: a systematic review of the literature

Objectives. To identify whether sleep disturbances are more prevalent in primary SS (pSS) patients compared with the general population and to recognize which specific sleep symptoms are particularly problematic in this population. Methods. Electronic searches of the literature were conducted in PubMed, Medline (Ovid), Embase (Ovid), PsychINFO (Ovid) and Web of Science and the search strategy registered a priori. Titles and abstracts were reviewed by two authors independently against a set of prespecified inclusion/exclusion criteria, reference lists were examined and a narrative synthesis of the included articles was conducted. Results. Eight whole-text papers containing nine separate studies met the inclusion criteria and were included in the narrative analysis. Few of these studies met all of the quality assessment criteria. The studies used a range of self-reported measures and objective measures, including polysomnography. Mixed evidence was obtained for some of the individual sleep outcomes, but overall compared with controls, pSS patients reported greater subjective sleep disturbances and daytime somnolence and demonstrated more night awakenings and pre-existing obstructive sleep apnoea. Conclusions. A range of sleep disturbances are commonly reported in pSS patients. Further polysomnography studies are recommended to confirm the increased prevalence of night awakenings and obstructive sleep apnoea in this patient group. pSS patients with excessive daytime somnolence should be screened for co-morbid sleep disorders and treated appropriately. Interventions targeted at sleep difficulties in pSS, such as cognitive behavioural therapy for insomnia and nocturnal humidification devices, have the potential to improve quality of life in this patient group and warrant further investigation

The role of sleep in chronic fatigue syndrome

Poor quality and unrefreshing sleep is one of the most common symptom complaints in Chronic Fatigue Syndrome (CFS). Despite this, the links between sleep dysfunction and CFS are not well understood, and there has been an absence of good quality research into the nature of sleep problems in CFS, which also lack consistency in the data reported. However, it remains plausible that sleep problems may help to maintain and exacerbate other existing symptoms. Given the dispute in models ranging from the biological to the psychological, competing to explain symptomology, it is a critical time by which we try to understand the relationship between poor sleep, fatigue, endocrine activity and CFS, in an attempt to shortcircuit this debate. With an aim to redress this, this thesis intended to examine the role of sleep from several angles, utilizing a range of assessment methods; Study 1 addressed the lack of in depth qualitative interview studies, to understand the extent to which sleep, its management and problems, are linked to the lived experience of CFS, and how it interacts with other symptoms (chapter 3). Patient narratives demonstrated that sleep disturbances experienced were highly unpredictable and variable over time, but played a key role in symptom maintenance; Study 2 examined self-reported sleep (via sleep diaries) in CFS patients, exploring whether sleep quality and daytime napping had an impact on daytime fatigue, sleepiness and cognitive functioning (key dimensions of the illness experience) (chapter 4). The results were highly variable but indicated that afternoon-evening napping was associated with greater impairment in daytime cognitive functioning in CFS patients. It was also evident that CFS patients with longer wake time and a shorter diagnosis had more severe fatigue; Study 3 explored the possibility that sleep problems in this population are not homogeneous and revealed four sleep-specific phenotypes to exist, which are amenable to different treatment approaches. The initial cross-sectional examination of single-night polysomnography (PSG) data identified 30% of the sample had a primary sleep disorder (PSD), which underscores the need to assess for PSDs in CFS populations (chapter 5); Study 4 was conducted to address the principle aim of this thesis; to determine the feasibility of a detailed, 3-night sleep assessment protocol in a small cohort of CFS patients. By utilising iv a range of methods including ambulatory PSG and a gold-standard protocol for sampling of diurnal salivary cortisol, the study piloted the most comprehensive assessment of sleep ever attempted in a CFS population. The findings established a successful protocol that was acceptable to patients (chapter 6), a key advancement in this field where effective and thorough sleep assessment is needed. Preliminary sleep data confirmed a notable variability of sleep problems to exist. Further, the temporal stability of sleep variables was established; sleep continuity (sleep duration, wake duration, sleep efficiency) and main architectural (sleep stages) parameters were consistent across two nights of assessment (chapter 7). The results presented in this thesis indicate that disturbed sleep is a major problem for patients with CFS, albeit highly variable between and within individuals. The identification of sleep phenotypes also confirms the heterogeneity of sleep in CFS. Interestingly, light sleep and arousability was a recurring sleep characteristic in patients that was mirrored by the studies presented throughout the thesis, highlighting a potential autonomic component. This should be a consideration for forthcoming work, along with the possibility that sleep disturbances may mediate the maintenance and exacerbation of symptoms, fuelling a reciprocal cycle that keeps the condition going. The preliminary findings presented throughout this trajectory of research will help to form the systematic development of a sleep characterisation and intervention programme. With this field moving towards more patient-centred medicine and tailored treatments, by combining data from the objective and subjective sleep measures, we aim to design a definitive multicentre study, using sleep-specific interventions, amenable to the four phenotypes identified. The long-term goal is to improve treatments that will enhance symptom management, which is crucial in this condition, at least until the CFS research understands the pathogenesis of this debilitating disease

Two year follow-up of sleep diaries and polysomnography in chronic fatigue syndrome: a cohort study

Background: Chronic fatigue syndrome (CFS) is a prevalent and debilitating symptom complex of unknown aetiology. Up to 96.8% of people with CFS report unrefreshing sleep and many describe, in qualitative interviews, changes in sleep over the course of their illness. Purpose: To establish whether subjective and objective sleep parameters change over a two-year follow-up period in patients with CFS. Methods: Twenty-two participants with CFS were recruited during routine consultations at a clinic in the North-East of England. All had their sleep characterised in a previously published cross-sectional study. Two were excluded from this analysis because they fulfilled criteria for a primary sleep disorder. The remaining 20 were contacted and 15 repeated fatigue- and sleep-quality questionnaires and sleep diaries, two years after their sleep was first characterised. Seven participants also repeated two consecutive nights of polysomnography. Paired statistical tests were used to compare follow-up with baseline measures. Results: Subjective questionnaires and sleep dairies did not show differences over two years follow-up. However, polysomnography demonstrated a higher proportion of stage one sleep (P < .01) and more awakenings per hour (P = .04) at follow-up. Conclusions: This study is the first to longitudinally assess sleep parameters in people with CFS. The results suggest that subjective perceptions of sleep remain stable, although objective measures indicated a tendency towards increased periods of lighter sleep. However, the small number of participants increases the likelihood that observed differences are Type I errors