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A study shows surveyed patients were nearly twice as likely to be satisfied with the care they receive from a usual clinician than an emergency caregiver.
Julie Kanter, MD
Patients with sickle cell disease are nearly half as likely to report satisfaction in the care they received at an emergency department (ED) as they are from their primary care provider, according to a new study.
The findings, based on a one-time survey of adults and adolescents with the inherited blood disease who reported to EDs with acute pain issues, shows the effect a lack of emphasis on quality, individualized care for sickle cell patients may have on their response to symptoms.
A team of US-based investigators, led by Julie Kanter, MD, of the University of Alabama, conducted the assessment of a Sickle Cell Disease Implementation Consortium (SCDIC) survey. The one-time survey enrolled 440 adolescents and adults aged 15-50 years old, with sickle cell disease.
The SCDCIC a National Heart, Lung, and Blood Institute (NHLBI)-funded organization conducts multicenter trials using implementation science to help accelerate translation of sickle cell-related discoveries to clinical practice.
“One of the first consortium activities was to develop a patient-centered needs assessment to explore patient experiences with the quality and availability of health care and the associated patient-level factors,” Kanter wrote. “This information will be used to inform and guide the projects developed and implemented by the consortium.”
Although research has observed barriers to care among patients with sickle cell disease—particularly observing issues in limited clinicians, screening and diagnosis, and biases based on patient race and ethnicity—assessment into patient-level experiences and perceptions of their care have been mostly ignored.
Kanter and colleagues assessed survey results for patient-reported metrics of pain interference, quality of healthcare, and self-efficacy. Their 440 observed patients were diagnosed with sickle cell disease across all genotypes, and the trial gauged how such variables associated with their perceptions of outpatient and ED care.
SCDIC sites conducting patient surveys did not require a final report of proposed participants for the trial, nor did they require respondents to answer every survey question. Response rate per question differed for each variable.
Patients were mostly African American (428 [97.3%]), female (245 [55.7%]), and a mean age of 27.8 years old. Hemoglobin SS or hemoglobin S β0-thalassemia were the most commonly reported sickle cell genotypes (306 [70.3%]).
Nearly all respondents (382 of 413 (92.1%) stated their satisfaction with their usual care physician. About two-thirds (287 [66%]) reported requiring an ED visit for acute pain in the last year. Only about half (146 [50.9%]) reported satisfaction with or perceiving having received quality care in their ED visit.
Associated to their negative quality of care was instances of severe pain or a clinician’s lack of empathy. Among patients to be satisfied in their ED care, younger patients (<19 vs 19-30 and 31-50 years) were more likely to report it.
In discussing their findings, Kanter and colleagues wrote about the significant association between disease-related pain and self-efficacy—reiterating that most respondents reported having frequent pain episodes.
“Individuals with SCD were clearly concerned with their pain and the treatment of their pain,” investigators wrote. “Our study is consistent with previous work that shows that many individuals experience high pain interference because of their SCD.”
In an editorial accompanying the study, Charity Oyedeji, MD, and John J. Strouse, MD, PhD, of the Duke University School of Medicine emphasized the need for greater investment into substantial resources to expand comprehensive sickle cell centers.
“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.
Kanter and colleagues concluded the findings show a positive correlation between comfort with a usual clinician and sickle cell patient’s perception of care quality. This emphasizes the need for SCDIC projects to help identify and help patients with the hematologic disease engage with a reliable 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,” they wrote.
The study, "Perceptions of US Adolescents and Adults With Sickle Cell Disease on Their Quality of Care," was published online in JAMA Network Open.