Background

Chronic sickle cell pain is linked to poorer quality of life, depressive symptoms, anxiety, and sleep disturbances in people with sickle cell disease (SCD). Current SCD pain treatment guidelines suggest reserving chronic opioid therapy until multiple other chronic pain interventions have failed. Even so, opioids are the most prescribed medications for adults with the disease. There is no data on adherence to opioid therapy in the general population or people living with SCD. It is critical to understand the use of opioids acutely and chronically among patients with SCD. We collected data on long and short-acting opioid adherence using electronic medication use tracking devices. We also examined whether adherence to medication was associated with patient reported outcomes.

Methods

Adults with SCD on chronic opioid therapy were recruited from the Johns Hopkins Sickle Cell Center between 2018-2019 (n=29) and asked to complete a baseline and 3-month follow up visit. At baseline, patients were (1) provided with medication monitoring devices and (2) asked to complete a survey. Devices log bottle openings in real-time as a measure of adherence. Survey measures included the ASCQ-me, for sickle cell disease health related quality of life (QOL) and PROMIS fatigue and sleep related impairment (SRI). PROMIS survey raw scores were converted to a T-score, where T-scores have a mean of 50 and standard deviation of 10. Higher scores are interpreted as greater fatigue and more sleep impairment. Demographics, medication treatment plans and acute care utilization was extracted from the medical chart. Adherence to long-acting opioids was calculated as total pills taken divided by total pills prescribed over the study period. Short acting opioid usage was calculated based on number of days participants took at least one pill/ total days on study. Spearman's Rho and Wilcoxon rank sum were used to examine the association between short and long-acting opioid use with outcomes including acute care utilization, QOL, and fatigue.

Results

A total of 29 participants were enrolled, and 26 participants completed the 3-month study. 74% were female, average age of the participants was 38.9. Eight subjects were taking only long-acting opioids, 6 were taking only short-acting opioids, and 12 were taking both short acting and long-acting full agonists. Average adherence to long-acting opioids was 65%±27%. Participants took short acting opioids on 50%±26% of possible days. Average frequency of acute care utilization was 6.2 (SD 4.8, range 0-16). Average fatigue score was 51.7±8.1(range 29.4-67.8). Average sleep related impairment was 60.9±8.6. Overall, there was no association between long-acting adherence and acute care utilization, however when the 4 participants on buprenorphine were removed from analysis, participants whose adherence to full agonist opioids was above 60% had significantly less acute care utilization (p=0.02). There were no associations between long-acting opioid adherence and QOL, sleep and fatigue. Short acting use was significantly associated with fatigue (Spearman's rho = 0.7609, p=.002) but there was no association with other outcomes.

Conclusion

In this sample of adults on chronic opioid therapy, medication adherence to daily opioid therapy was suboptimal and sleep related impairment was high. Higher adherence to full agonist long-acting opioids was associated with less acute care utilization. Higher use of short acting opioids was significantly associated with higher levels of fatigue but not with sleep related impairment. Further study is needed to better understand the impact of adherence to opioid medications and interventions to support adherence to pain treatments in SCD.

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2025
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