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

Hierarchical regressions for the dependent variables; Chalder Fatigue Scale, Cognitive Failures Questionnaire, Trail Making Task and Epworth Sleepiness Scale.

<p>Notes:</p><p>*<i>p</i> < .05,</p><p>** <i>p</i> < .01,</p><p>*** <i>p</i> < .001;</p><p>Entries represent standardized beta coefficients.</p><p>SE, sleep efficiency; NWAK, number of awakenings; WASO, wake after sleep onset; SOL, sleep onset latency</p><p>Hierarchical regressions for the dependent variables; Chalder Fatigue Scale, Cognitive Failures Questionnaire, Trail Making Task and Epworth Sleepiness Scale.</p

Self-reported sleep, functional & symptom assessment data for CFS patients.

<p>Notes: <i>N</i> differs on different measures. Data <i>presented as means and standard deviations (SD)</i>. HADS, hospital anxiety and depression scale</p><p>Self-reported sleep, functional & symptom assessment data for CFS patients.</p

Hierarchical regression for the dependent variable; Trail Making Task (replacing total napping duration with AM and PM napping duration in the model).

<p>Notes: <i>N</i> = 96</p><p>* <i>p</i> < .05,</p><p>** <i>p</i> < .01,</p><p>*** <i>p</i> < .001;</p><p>Entries represent standardized beta coefficients</p><p>SE, sleep efficiency; NWAK, number of awakenings; WASO, wake after sleep onset; SOL, sleep onset latency</p><p>Hierarchical regression for the dependent variable; Trail Making Task (replacing total napping duration with AM and PM napping duration in the model).</p

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

Abstract 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 &lt;.001). Being male, higher depression and more afternoon naps predicted 25.6% of the variance in objective cognitive dysfunction (p &lt;.001). Higher anxiety and depression and morning napping predicted 32.2% of the variance in subjective cognitive dysfunction (p &lt;.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