SCDAA 46th Annual National Convention

Abstracts

Authors: 
Dr. Cynthia Sinha- Emory University School of Medicine, Dr. Nitya Bakshi- Emory University School of Medicine, Ms. Diana Ross- Emory University School of Medicine, Dr. Lakshmanan Krishnamurti- Emory University School of Medicine

Objective 
Chronic pain is a debilitating complication in adults with sickle cell disease (SCD), and is associated with substantial morbidity, healthcare utilization, and risk of premature mortality. While chronic pain is most commonly treated with opioid analgesics, it is not clear whether opioids are safe or effective in the treatment of this condition. In the past two decades, the incidence of opioid abuse has soared in the general population, and opioid abuse was associated with over 64,000 deaths in the US in 2016. Recognizing the public health importance of the “opioid epidemic,” the CDC has published recommendations for prescribing opioids for chronic pain. The guidelines do not cover the use of opioids in patients with cancer and end-of-life care. The guidelines provide 12 detailed recommendations for initiating and continuing opioids for chronic pain, determining how to develop an opioid therapy plan, and assessing risk and harm of opioid use. The guidelines also propose restrictions on the dosage and frequency of “as needed” prescriptions. While the guidelines do not specifically address SCD chronic pain, there is a concern that implementation may exceed the scope of the guidelines, that there may be unintended medical consequences for the SCD patient with chronic pain, and that patients may feel stigmatized or discriminated against. To date, no research has investigated the perspective of adult patients on the impact of the heightened focus on opioid abuse as a result of the CDC guidelines. We, therefore, sought to interrogate the standpoint of adult patients on the effect of the implementation of the CDC guidelines by healthcare professionals at various levels.
Methods
We conducted semi-structured qualitative interviews of adults living with SCD to learn about their experiences with chronic pain, pain management, and physician interactions. We specifically asked participants thoughts on how the concern about the opioid epidemic among public health and medical communities has impacted their individual experiences and the SCD community as a whole. We used a semi-structured interview guide to collect data. Participants were recruited from SCD conferences and symposiums. From this first wave of recruitment, we utilized snowball sampling. Participants shared our study with friends, support groups, and posted the survey on social media sites that support SCD. We also published details of the study at two sickle cell clinics. Individuals 18 years old or older and diagnosed with SCD were eligible. We conducted interviews over the phone, but a few took place face-to-face. Audio recordings were transcribed verbatim. Data were analyzed using Grounded Theory Methodology.
Results
Twenty adults living with SCD were interviewed, of whom 17 were female. All but one participant reported experiencing pain on 3 or more days a week. The participants reported a mean daily pain intensity range of 4.8 on a scale of 10. Results were grouped into three emerging themes. The first theme, was the consistency of implementation of the CDC guidelines. The experience of the subjects suggest that implementation of the guidelines is variable. Patients had their doses decreased variably and had decreased access to opioids but were not offered alternative approaches to pain management. The second theme was the adverse impact of the guideline implementation on the health of patients. Restrictive access to pain medications leads to patients rationing their opioid usage and seeking alternatives such as the use of cannabis. Participants also felt that the exclusive focus on pain by their physicians also seemed to adversely impact their attention to the other aspects of their care. The third theme was the unintended stigmatization related to the implementation of the guidelines. Many patients felt stigmatized even though they did not feel like they were abusing opioids and that their opioid use for pain was unrelated to the opioid epidemic. Many patients were required for the first time to complete opioid contracts.
Conclusion
These data indicate that in the perspective of adult patients the CDC guidelines are implemented inconsistently, have adversely impacted care and resulted in the unjustified stigmatization of patients with SCD with chronic pain