Among emergency physicians, use of the term “Sickler” is associated with negative attitudes toward people with sickle cell disease
Authors: Jeffrey Glassberg, Paula Tanabe, Lynne Richardson, Michael DeBaun
Journal: American Journal of Hematology (2013)

The term "sickler" is often used by medical practitioners to refer to children and adults with a diagnosis of sickle cell disease (SCD). Although labels for patients with chronic diseases are common, (other notable terms include "CF'er" for cystic fibrosis and "asthmatic" for asthma), many people with SCD find the term offensive. Qualitative literature dating back to 1994 found that individuals consider the term a label that reduces them to nothing more than their disease 1. Despite this, use of the term "sickler" is pervasive, with internet searches for "sickler" yielding thousands of results. Electronic searches of medical literature return peer-reviewed articles about SCD that use the term in their title as recently as 2010 2. Many physicians who use the term "sickler" insist that it is not meant to be pejorative, but that it is a simple matter of efficiency ("sickler" is fewer syllables than "person with sickle cell disease"). However, results from a recent survey conducted by our group at the American College of Emergency Physicians 2011 annual meeting indicate that the use of this term may not be so innocuous, as our findings suggest that practitioners who use the term "sickler" may harbor negative attitudes toward patients with SCD. To further explore the importance of the term "sickler" and its association with attitudes and practices of emergency physicians, we administered a validated survey at the 2011 meeting of the American College of Emergency Physicians. The hypotheses we tested were that physicians who use the term "sickler" will be more likely to harbor negative attitudes toward people with SCD and that they were less likely to adhere to practice guidelines when managing acute SCD pain. Before the data were analyzed, our group was divided in their predictions of the results. One member felt strongly that physicians who use the term are not seeing their patients as people, and thus, will inevitably deliver low-quality care. Others felt that the term was mostly used out of ignorance without malice, and that its use would have no association with negative attitudes or the quality of pain management. Survey validation and methods have been described previously 3. Briefly, emergency providers in attendance at the 2011 American College of Emergency Physician's Scientific Assembly were approached in the exhibit hall to participate in a written survey. The survey contained 33-items, developed or adapted from the extant literature with three sections: (1) demographics (10-items), (2) provider practice patterns (6-items), and (3) provider attitudes (17-items). The primary predictor variable for these analyses was the question "how often do you refer to a patient with SCD as a 'sickler,'" with 4-point Likert responses ranging from never to always. Based on factor analyses, items from the attitudes portion of the survey were recoded into three attitude scales: the negative attitude scale (scored 0–100, mean 39.6, SD 21.9; higher scores indicate more negative views about people with SCD), the red flag behaviors scale (scored 0–100, mean 58.8, SD 22.4, higher scores indicate greater belief that certain SCD patient behaviors raise concern that the patient is inappropriately drug-seeking), and the positive attitude scale (scored 0–100, mean 37.2, SD 23.0; higher scores indicate an endorsement of more positive views about people with SCD). Practice pattern items were recoded to indicate whether providers were adherent to the following eight recommendations for the management of acute SCD pain (adapted from the NHLBI and APS guideline publications): (1) use parenteral opioids, (2) re-dose opioids within 30 min for inadequate analgesia, (3) use patient controlled analgesia devices when available, (4) avoid meperidine, (5) when intravenous administration is not available, administer opioids subcutaneously rather than intramuscular, (6) use NSAIDs unless contraindicated, (7) use acetaminophen unless contraindicated, (8) consider antihistamines as an opioid sparing adjuvant. To explore associations between physician attitudes and use of the term "sickler" with adjustment for race and gender, MANOVA was performed. To explore associations between the use of the term "sickler" and adherence to the eight guidelines mentioned above, multivariable relative risk regressions (log-binomial) with robust error estimation were performed. To correct for multiple comparisons, a Bonferonni correction was performed (for each of eight regressions performed) to adjust the cutoff to 0.00625 for statistical significance. Analyses were restricted to physicians only (student, midlevel, and prehospital providers excluded). Our sample was the largest cohort of its kind, including 655 emergency physicians from 49 states with representation from academic (67.9%) and community (32.1%) providers. This represented approximately 2% of the 32,000 members of the American College of Emergency Physicians, with similar racial and demographic characteristics to the overall group of Emergency Physicians in the United States today. Use of the term "sickler" was common with 13.1%, 34.7%, 43.3%, and 8.7% indicating that they use the term "never," "rarely," "frequently," or "always," respectively. A statistically significant relationship was observed between physician negative attitudes toward individuals with SCD and the use of the term "sickler." Multivariable analyses indicated a clear trend that, with increasing use of the term "sickler," providers harbored more negative and less positive attitudes (Fig. 1). Providers who indicated that they rarely use the term were the reference group. For the negative attitude scale, those who "always" use the term "sickler" to refer to people with SCD scored on average 17.1 (95% CI 10.7–23.6) points higher on the negative attitudes scale, whereas those who "never" use the term scored on average 7.8 points lower (95% CI 2.1–13.6). Similar trends were noted for the red flag behavior scale and the opposite trend was observed for the positive attitudes scale (overall MANOVA P-value <0.0001). Despite the observation of the association between the term "sickler" and negative attitudes, use of the term "sickler" was not substantially associated with lower adherence to evidence-based guidelines for acute care in the ED. The majority of emergency physicians self-reported adherence to the central tenets of acute pain management in SCD. Overall, 93% of emergency physicians indicated that they frequently or always use parenteral opioids to treat acute SCD pain and more than 85% of emergency physicians indicated that they are willing to re-dose opioids within 30 min for inadequate analgesia. Those who "frequently" use the term "sickler" were 12% less likely to rapidly re-dose opioids (rate ratio 0.88, 95% CI 0.82–0.94). While statistically significant, this result indicates that even amongst physicians who frequently use the term "sickler," over 70% are adherent to this guideline. Limitations in our dataset require cautious interpretation of these findings. Our sample included approximately 10% of all physicians in attendance at ACEP and 2% of all emergency physicians in the United States with potential bias toward academic providers, thus the effects of the term "sickler" should be explored separately in non-academic settings. Additionally, all responses were self-reported and may or may not accurately represent providers' practice. Lastly, the instrument regarding quality of care may not reflect actual data, but self-report of adherence to guidelines. With this secondary analysis of data from the survey of Emergency Provider Practices and Attitudes Towards Patients with Sickle Cell Disease, we demonstrate that among emergency physicians, use of the term "sickler" to refer to people with SCD is strongly associated with negative feelings toward people with SCD. Our findings shed light on a common physician behavior that may be problematic and lend support to the widespread patient perspective that the term is disparaging. Better studies are needed to determine whether a negative attitude about the care of individuals with SCD, which includes using the term "sickler" are associated with less optimal medical care for this population. Jeffrey Glassberg Paula Tanabe Lynne Richardson Michael DeBaun Duke University Schools of Nursing and Medicine