Patient Perception of Sickle Cell Care Differs by Acute vs Nonacute Settings


Helping patients find a clinician who is experienced with sickle cell disease can have many positive benefits, a new study noted.

A new study published Friday suggests that a negative perception of care may hinder patients with sickle cell disease (SCD) from receiving care, particularly care in emergency departments (EDs).

Published in JAMA Network Open, the survey study, conducted by the Sickle Cell Disease Implementation Consortium (SCDIC), enrolled 440 adolescents and adults, aged 15 to 50 years, in 7 states. Patients were asked about their pain interference, quality of health care, and their ability to be self-efficacious.

SCD is the most common inherited blood disorder and affects approximately 100,000 US individuals, primarily African Americans. Patients with SCD are affected by multiple health disparities, including stigmatization and worse health outcomes.

The SCDIC is a cooperative research program composed of 8 academic and clinical sites: University of Illinois at Chicago in collaboration with Sinai Health System, Washington University School of Medicine, Augusta University, Icahn School of Medicine at Mount Sinai, St. Jude Children’s Research Hospital, Medical University of South Carolina, Duke University Medical Center, and University of California Benioff Children’s Hospital Oakland. It is funded by the funded by the National Heart, Lung, and Blood Institute.

Participants completed the Patient Reported Outcomes Measurement Information System 4-item Pain Interference Short Form as well as the the Adult Sickle Cell Quality of Life Measurement Information System quality of care measure. The Sickle Cell Self-Efficacy Scale was used to assess self-efficacy for participants’ perceived ability to deal with daily aspects of SCD, such as pain and fatigue. The surveys were administered once during office visits by trained study coordinators at 7 of the 8 SCDIC sites in 2018.

Notably, the sites did not report the number of individuals approached to participate in this study, so a response rate could not be calculated. In addition, patients were not required to answer every question in the survey, so the response rate per question differed for each variable.

Those who did participate were primarily female (245 [55.7%]) and African American (428 [97.3%]), with a mean (SD) age of 27.8 (8.6) years. Most (306 of 435 [70.3%]) had hemoglobin SS or hemoglobin S β-thalassemia.

Most respondents (361 of 437 [82.6%]) reported having access to a usual care source, and the majority were also satisfied with their usual care physician (382 of 413 [92.1%]).

Satisfaction was much less for care received in the ED, particularly for patients in pain. Those with severe pain or 4 or more pain episodes in the previous 6 months were much less likely to be satisfied with their ED visits. Respondents said that when they experienced severe pain or a lack of empathy, this was linked with a negative quality of care. Of 435 participants, 287 (66.0%) reported requiring an ED visit for acute pain in the previous year. Only about half (146 of 287 [50.9%]) reported that they were satisified or felt that they had received adequate quality care in the ED.

The authors wrote that clinicians in the ED may lack disease-specific knowledge or may not have been in regular communication with the patient’s primary care doctor. They also noted that younger patients, who are more likely to be treated in pediatric facilities, reported higher levels of satisfaction with ED care than older patients. Adults over 30 years but younger than 50 were the least likely to be satisfied with their ED care.

Helping patients find a clinician who is experienced with their disease can have many positive benefits, the authors noted. A positive relationship with a clinician can influence their perception of quality care and build a foundation that could lead to better outcomes, reduced pain, and increased trust.


Kanter J, Gibson R, Lawrence RH. Perceptions of US adolescents and adults with sickle cell disease on their quality of care. JAMA Netw Open. Published online May 29, 2020. doi:10.1001/jamanetworkopen.2020.6016

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