Characterization of Chronic Pain and Opioid Usage in Adult Sickle Cell Disease Patients Referred to a Comprehensive Pain Clinic

Dear Editor, The adult Sickle Cell Disease (SCD) program at our tertiary academic hospital network developed a collaborative approach with the Comprehensive Pain Program to better assess and manage pain in their SCD population. We followed 16 consecutive SCD patients referred to our pain program due to poor pain control over a 4-year period (2010–2013). Data collected included demographics, types and doses of opioids prescribed, use of other than opioid drugs, and verbal pain ratings on a numerical rating scale (NRS) ranging from 0 to 10. The average prescribed daily dose (in milligrams) of oral morphine or equivalent was calculated for each patient in Morphine Equivalent Dose (MED). Opioid users were classified as HOU (High Opioid Users) or LOU (Low Opioid Users), depending on whether the exceeded 200 mg of morphine equivalent per day the “watchful dose” recommended by the Canadian Guideline for Safe and Effective Use of Opioids in Chronic Non-Cancer Pain. At this dose, the Guideline recommends reconsideration of effectiveness of opioid treatment in a given patient if he/she has failed to respond adequately [1]. In terms of demographics, 62.5% of the patients were Canadian born primarily of African or Caribbean decent, female/male ratio was 2.2:1, mean age was 29.5 years, and mean pain duration was 5.25 years with high rate of functional impact (68.8% being unemployed, and 81.3% receiving disability payments). All patients reported acute painful crises of variable intensity at early age. By the time of referral, all stated they were in constant pain (NRS mean 5.38 ± 2.34; range 1–9/10). All but three patients (13/16 or 81.25%) were prescribed opioids, with mean MED 172.4 ± 167.6 mg (range 20–560 mg); ), 38.4% of the opioid users (5/13) were HOU (mean MED 343.2 ± 111.4; range 202–560 mg) and the remainder (8/13) LOU (mean MED 78.52 ± 29.71; range 20–120 mg). At the time of referral, 5/16 patients were on Hydroxyurea and 11/16 had been engaged with the Hematology Social Work service. On the other hand, antidepressants and non-medical modalities had not been prescribed or recommended. After a thorough history, clinical examination, review of files, and further investigations as needed, the pain team concluded that in 61.5% (8/13, 4 HOU and 4 LOU), opioids were not indicated due to absence of physical abnormalities on clinical examination, absence of structural pathology on investigations, and/or erratic/problematic use of opioids. The pain team suggested reduction and/or discontinuation of opioids in those eight patients. In the remaining five opioid users the team recommended an increase of opioids [in one case with shoulder avascular necrosis (AVN)]; no change in opioids in a second one until further investigations; and modification of the opioid type without change in the dose in another three opioid users. All four patients with AVN were opioid users (2 HOU and 2 LOU). Antidepressants were added in 5/13 opioid users and one non-opioid user. Mindfulness-based stress reduction and other non-pharmacological modalities were suggested for 4/13 of patients. Two of the 13 opioid users considered unsuitable by the pain team for long-term opioid therapy were involved in unpleasant exchanges with the staff in regards to their demands for opioids and their aberrant behavior. Significant challenges with this patient group included a) failure of most to return for follow up appointments at the pain clinic, and b) multiple prescribers (hospital hematology staff as well as other medical staff in community hospitals and outpatient settings). Our small study shows that in this select sample of SCD patients, the majority were not considered by the pain team appropriate for long-term opioid management. Our findings confirm the concerns of the Hematology team who had noted that Canadian SCD patients were treated liberally with opioids as opposed to UK and Jamaican experience with similar clinics [2,3]. It is also worth noting that in this sample of patients 38% of the opioid users were exceeding the 200 mg MED (the “watchful dose” of the 2010 Canadian Guideline for Safe and Effective Use of Opioids in Chronic Non-Cancer Pain). The management of adult SCD patients is indeed complex because of multi-organ involvement, chronic pain, psychosocial and socioeconomic factors, potential neurocognitive impairments, and concerns for opioid dependence and tolerance. In Canada and the United States, dedicated adult providers for SCD are few in number and under-resourced. Access to sickle cell specialists is associated with greater uptake of Hydroxyurea prescriptions, the only disease-modifying drug available, proven to reduce acute pain episodes, most of the end-organ damage, and possibly reduce chronic pain prevalence as a result. However, the use of Hydroxyurea alone is likely insufficient to combat the pervasive use of opioids in this population. Education of hematologists and collaboration between them and a pain specialist is vital to ensure appropriate pain management and education of the patient on functional improvements, not simply pain score or duration. Early referral of a patient to a pain specialist will result in better long-term pain outcomes (though realistically, this is also difficult due to the dearth of available pain clinics and specialists). We suggest that most SCD patients on long-term opioids can be managed with non-opioid treatments (except at the time of VOC) [4]. Opioid medication is only a single component of comprehensive management of chronic pain among patients with SCD. When combined with behavioral management, multi-disciplinary care, and patient conscious participation, there are significant chances of more effective care and higher levels of quality of life for patients [5]. If long-term opioid therapy is necessary, it must be combined with understanding whether a biomedical cause amenable to opioids exists, provision of proper follow ups, and making sure that prescriptions are written by single providers, while alternative methods for pain relief should be considered. However, as patients live longer and the focus has turned to quality of life issues, further research on SCD and chronic pain is needed to advance our understanding and better guide management in this area, so that patients may fulfill their psychosocial potential and not be debilitated by pain.

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