Beyond the crisis: Tracking vaso-occlusive crisis recovery through patient-reported experiences and wearable data insights
No Thumbnail Available
Authors
Summers K.
Agrippa O.
Yusuf M.
Anie K.
Telfer P.
Lugthart, S.
Check for full-text access
Issue Date
2025
Type
Article
Language
Keywords
Alternative Title
Abstract
Introduction: Sickle cell disease (SCD) is characterised by recurrent vaso-occlusive crises (VOCs) with long-lasting effects that extend beyond acute pain episodes. This work sought to investigate the burden of sleep-related symptoms pre-and post-VOCs, in order to better understand the factors affecting post-VOC recovery and longer-term outcomes. Method(s): Between February 2024 and February 2025, data were collected from 34 individuals with SCD in the UK through a digital survey and wearable devices. Symptom severity (1 = least, 10 = most), sleep disturbances, fatigue, and medication use were recorded during VOCs and the recovery period, recorded and assessed as a numerical value, and linear regression was applied to wearable data (p < 0.05) to explore associations with symptom burden and recovery duration. Result(s): Across participants (74% female; median (range) age 37.5 (18-60) years), 76% were HbSS and 24% HbSC genotypes. Recovery durations varied, 21% recovering in 1-3 days, 32% in 4-7 days, 35% in 1-2 weeks, and 12% required more than 2 weeks. Most participants (85%) reported experiencing the same post-VOC symptoms each time, 47% with consistent severity linked to VOC cause (n = 2) or symptom intensity (n = 2). Similarly, 68% reported consistent recovery durations, impacted by VOC severity (n = 1) or pain location (n = 2). Patients with prolonged recovery reported more severe night sweats both during VOCs and recovery (Figure 1A), and those recovering over >=1 week had the highest levels of fatigue and disrupted sleep. Additional sleep concerns included difficulty falling asleep (21%) and anxiety during sleep (9%). Beyond physical symptoms, symptom burden included reduced mental health and ability to socialise in those requiring >=4 days for recovery (Figure 1B Wearable data indicated lower light sleep and higher deep sleep during VOCs and the first week post-VOC among those with longer recovery durations. Light sleep and night SpO2 in turn negatively correlated with pain scores, while higher deep sleep and lower sleep heart rate were linked to lower pain severity (p in turn negatively correlated with pain scores, while higher deep sleep and lower sleep heart rate were linked to lower pain severity (p 2, ECG bpm, activity levels, and sleep HR (p < 0.05). However, five participants reported worsened recovery symptoms from opioids, including insomnia, digestive issues, and fatigue. Of the 12 participants who used medications specifically for post-VOC recovery, 9 noted symptom improvement. Four found supplements (vitamins/electrolytes) beneficial in managing fatigue and sleep disturbance (Figure 1C). Conclusion(s): This work highlights that post-VOC recovery in SCD is highly individualised, with extended recovery times linked to increased symptom severity, disrupted sleep, and greater impacts on mental and physical wellbeing during VOCs and the post-VOC period. Furthermore, this appeared to be associated with the highest usage rates across all medication types and a subsequent higher disease burden and medication reliance during recovery management, with low or inconsistent effectiveness. Wearable insights provided new understanding of how sleep physiology changed during recovery, particularly in those taking opioids, who in some cases reported worsening symptoms and side effects. Despite high medication use, recovery support remains inconsistent, emphasising the need for more targeted approaches to help individuals return to baseline health after a VOC.
Description
Citation
Publisher
License
Journal
British journal of haematology