Reply to Ruan X et al: “A comment on pattern of opioid use in sickle cell disease”

To the Editor

We thank Ruan and colleagues for their comments on our recently published study of opioid use in sickle cell disease (SCD)(1), and share their concern that persons with SCD may be unfairly denied needed pain relief during an acute pain crisis. We would like to emphasize that our study addressed daily opioid use as an outpatient rather than need for opioids in the emergency department or during hospitalization for a vaso-occlusive crisis (VOC). We hope that the message of our article is that on the whole, SCD patients do not over-utilize opioids in their daily life, and that their need for adequate doses of opioids during a pain crisis should not be viewed with suspicion or denied.

Ruan et al comment that “Patients with SCD tend to consume more opioids than many other chronic diseases,” but we believe our data indicate that this is not necessarily the case when viewed from the perspective of the daily life of our patients. First of all, our study analyzed home opioid use in this patient population by utilizing prescription information. We found that the majority of the SCD patients (71%) used an average of less than 10 mg OME daily at home, and this average reflects the fact that many patients do not use opioids every day. Our unpublished results utilizing a medical claim database showed similar results that the median daily opioid dose at home was approximately 2 mg (OME) in 7,561 commercially-insured SCD patients, who tend to have fewer complications and lower healthcare utilization compared to patients on publicly-insured health plans. A previous study analyzed opioid use in the SCD patients enrolled in the Multicenter Study of Hydroxyurea study (2), who tend to be relatively high-dose opioid users based on the inclusion criteria of at least three acute painful crises in the year before enrollment. Their results showed a daily median dose of 15 mg OME during at-home periods. We agree that the daily dose of opioid used during acute care or inpatient stay treating VOC is significantly higher than the home dose (2).

Secondly, we share the same concern that the current national opioid phobia may deny opioids to SCD patients even when they are truly needed for adequate pain control, especially during VOC. Some SCD patients indeed encounter delayed access to legitimate opioid use based on our own clinical experience. Our results showed that there was a cluster of SCD patients (13%) who used more than 50 mg OME daily, despite a relatively low opioid dose usage in the overall SCD patient population (1), which is also consistent with our unpublished observation from the large cohort of commercially-insured SCD patients. This subset of SCD patients may contribute to the misconception that patients with SCD consume more opioids than other chronic pain syndromes, since they tend to be frequent healthcare utilizers. When treating this subset of SCD patients, much higher doses of opioids may be required to achieve adequate pain control, especially during VOC. Therefore, it is essential to individualize the pain management plans based on clinical factors such as previous pain regimens, pain medication history, and other comorbidities instead of using a cookie-cutter approach. Adequate education among the healthcare providers about SCD is also important to optimize care in this patient population.

Pain, as the hallmark of SCD, is a complex manifestation significantly impairs quality of life, and frequently requires opioid analgesia (3). We hope that our results and this discussion will help to understand the patterns of opioid use in the SCD patients in the outpatient setting and clarify some misconceptions about this disease, eventually leading to optimal care in this patient population.