Negative perceptions of ED care a barrier for patients with sickle cell disease
Negative perceptions of care in the ED setting appeared to be a barrier to seeking care among adolescents and adults with sickle cell disease, according to results of a prospective survey-based study published in JAMA Network Open.
“Improving access to health care and providing broad implementation of guideline-based health care services for individuals with sickle cell disease are the ultimate goals of the Sickle Cell Disease Implementation Consortium (SCDIC),” Julie Kanter, MD, associate professor of medicine and co-director of the Comprehensive Sickle Cell Center at The University of Alabama at Birmingham, as well as a HemOnc Today Next Gen Innovator, and colleagues wrote.
“Sickle cell disease is the most common inherited red blood cell disorder in the United States,” they noted. “Adults with sickle cell disease often may not be seen by [a disease] specialist, do not receive appropriate analgesia during vaso-occlusive pain episodes, and are under prescribed disease-modifying therapies, such as hydroxyurea or long-term transfusion. Lack of access to health care services adds to the vulnerability of [this] population, imparting greater risk [for] severe disease complications and early death.”
Studies have shown that individuals with sickle cell disease face barriers such as stigmatization, inequities in funding and worse health outcomes that may preclude them from accessing quality health care.
The SCDIC sought to further examine patient experiences with the availability and quality of health care, as well as related patient-level factors. It developed a one-time survey to evaluate pain interference, quality of health care and self-efficacy, and associations between these variables and patient perceptions of outpatient and ED care.
Study coordinators distributed the survey during office visits in 2018 at seven of eight SCDIC sites. The sites did not report the number of individuals asked to take part in this study, and coordinators did not require participants to answer every survey question.
Kanter and colleagues analyzed surveys completed by 440 patients with sickle cell disease (mean age, 27.8 years; range, 15-50; 55.7% female; 97.3% African American). The majority (70.3%) had hemoglobin SS or hemoglobin S beta zero thalassemia.
Results showed most respondents (82.6%; n = 361 of 437) reported access to nonacute sickle cell disease care, with 92.1% (n = 382 of 413) noting satisfaction with their usual care physician.
Among 435 respondents, 287 (66%) reported needing to visit the ED during the previous year for acute pain. In the previous 6 months, 168 of 437 respondents (38.4%) reported three or more treat-and-release ED visits for pain. Three-quarters of respondents (n = 327 of 433) reported severe pain episodes at home for which they did not seek care, and 207 respondents said they missed at least 1 week of usual activities because of pain at home.
Respondents generally reported being less satisfied with ED care compared with that of their usual care clinician. About half (50.9%) of those who required an ED visit for pain reported satisfaction with or perceived having adequate quality care in the ED.
Respondents indicated that they associated severe pain episodes or lack of empathy from a clinician with a negative quality of care. Those aged younger than 19 years reported better experiences in the ED than those aged 19 to 50 years.
“As found in the present study, comfort with a usual clinician can enhance individuals’ perception of their quality of care and may provide the necessary relationship from which to improve outcomes,” Kanter and colleagues wrote. “Thus, it is important that we use the SCDIC projects to identify and help individuals with [sickle cell disease] locate and engage with a knowledgeable clinician. It is equally important that strategies be implemented to enhance communication between the usual clinician and ED providers to improve trust, decrease stigma and increase satisfaction with pain management.”
Investment of substantial resources to expand comprehensive sickle cell centers, as well as improvement of sickle cell disease self-efficacy, are needed to provide high-quality care for all people with this disease in the United States, hematologist oncologist Charity Oyedeji, MD, and associate professor of medicine John J. Strouse, MD, PhD, both of the department of medicine at Duke University, wrote in an accompanying editorial.
“Our efforts need to go down the road into smaller communities and rural areas and overcome the negative influence of social determinants of health that can be barriers to high-quality care,” they wrote.