Abstract

Purpose: Previous studies have identified sleep-related metrics as important players in patient wellbeing, with links between sleep disturbances to both acute and chronic pain, as well as quality of life (QoL), overall physical health, functional disability, and clinical depression in Sickle Cell Disease (SCD). This work therefore aimed to improve patient QoL and overall outcomes through the identification of key underlying factors in patients with SCD. This focused on generating real-world evidence that describes the potential impact of live sleep biometrics upon patient QoL, driving understanding of causal factors and potential preventative best practice at a patient self-management and clinical level. Materials and methods: An FDA approved, CE marked wearable monitoring device (Withings ScanWatch) was provided to 85 patients and worn over a 12-month period, automatically recording key biometrics including sleep quality and heart rate. This was supplemented by manual patient self-reported EQ-5D scores, entered via a patient-reported outcomes (PRO) portal. Analysis was conducted within a final cohort of 54 patients (64%) who had both recorded sleep data and EQ-5D data. Patients were stratified into low, average, and high categories regarding their averages across several key sleep metrics, and where these averages fell within the calculated cohort percentiles. A comparison of the average EQ-5D score was then compared across patients between the three categories for each sleep metric, in order to identify any measures with potentially statistically significant impacts upon resulting patient QoL. Results: While no statistically significant differences were seen between the three categories in terms of their EQ-5D score across the measures ‘total sleep duration’, ‘sleep heart rate’, ‘number of wake ups per night’, ‘time spent awake’, ‘time to sleep’, and ‘time to wake up’, a potential link was seen between EQ-5D scores and ‘deep sleep’ levels. Indeed, analysis of the link between patients’ average percentage of deep sleep (as a proportion of total sleep duration) and EQ-5D score found that patients within the lower range (0-39%) had statistically significantly higher average EQ-5D scores than those in the high ranges (50-83%) of deep sleep (p = 0.030), as shown in Image 1 below. Conclusion: Our data identified an early association between the amount of deep sleep patients with SCD have and their self-reported EQ-5D scores, as an indicator of QoL, suggesting longer periods of deep sleep each night may be linked to lower patient-perceived wellbeing. Moreover, previous publications have indicated an optimal deep sleep percentage between 13-23% of total sleep duration, our data suggesting that a significant proportion of this patient cohort exceeded the accepted levels of “healthy” deep sleep (96%, 52/54). Further investigation is required to explore any potential causal relationship, in order to establish whether poorer QoL may see patients enter longer periods of deep sleep, or whether this widespread excess in deep sleep itself exerts an impact upon patient QoL in SCD. Future Steps Expansion to a larger cohort of patients, with analysis for breakdown between different patient subgroups, including genotype, age, and gender. Exploration of any additional links to measures such as healthcare utilisation, comorbidities, or pathology results. Correlation between deep sleep percentage and EQ-5D score (left), with associated statistical significance analysis between patients within the low vs. high deep sleep categories (right). The authors do not declare any conflict of interest

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