Emergency Care is Not Ideal for SC Patients

Study Finds Emergency Care is Not Ideal

Most people with sickle cell disease (SCD) in the U.S. are happy with their PCPs, but less so with emergency care given at a hospital to manage severe pain, according to a survey of more than 400 teenage and adult patients.

How a person expects to be treated weighs on decisions to access care. Responses showed, with more than half of these patients saying they waited or avoided needed ER care in the past year.

The study based on these answers, “Perceptions of US Adolescents and Adults With Sickle Cell Disease on Their Quality of Care” was published in the journal JAMA Network Open,

Pain crises can be common for people with SCD, due to the abnormal hemoglobin — the protein that takes oxygen throughout the body — that changes the shape of their red blood cells.

SCD affects African-Americans and Hispanics more, many of whom are of lower socioeconomic status and with poorer access to medical care. Prior studies show that a large number of SCD patients do not receive good treatment. They also do not regularly see a disease specialist.

“Access to health care services is reported as suboptimal in SCD because many affected individuals are not receiving adequate treatment as outlined by evidence-based clinical guidelines,” the study said.

The Study

Researchers across the U.S. surveyed teens and adults patients. They used questionnaires given at office visits in 2018, about how they saw the quality of their medical care.

Conducted by the Sickle Cell Disease Implementation Consortium, the study asked 440 SCD patients, ages 15 to 50, across seven states. Most were Black (97.3%) and female (55.7%), and a majority (68.1%) were receiving Medicaid, a government insurance program for lower-income residents. Participants were not experiencing acute disease symptoms at the time of the survey.

Patients gave their perceptions of care in four areas. They were pain interference and experience, quality of care, social determinants of health, and self-efficacy regarding SCD.

Most (287 or 66%) reported needing an ER hospital visit for pain over the past year. Then 168 people (38.4%) reported needing three or more such visits. Of these people, about half — 50.9% — said they were “usually or always” satisfied with emergency care give.

Some 29% labeled such care as their “most negative” experiences. And more than half, 52%, said that “bad” ER visit experiences contributed to their not getting care.

In total, 254 respondents also said they avoided or delayed emergency medical care. This was for severe pain episodes in the past year.

More Findings on Emergency Care

A majority (82.6%) reported having access to a regular clinician for non-acute care. Among this group, 76% said their healthcare provider “explained things in a way they could understand, listened to them, and treated them with courtesy and respect,” the scientists wrote.

Most people (314 of 341, or 92.1%) said they were usually or always happy with their doctors. And 82.5% were usually or always happy with care during scheduled appointments. More than half, 54.3%, also said their usual doctor “very much” knew how SC affected their lives.

The one area in which these doctors did not score as highly was in spending enough time with the patients; still, 66% of people rated their regular care experiences as the “most positive.”

Younger patients, those under age 19, tended to report more positive ER care experiences than older ones. This is possibly because they were in pediatric care, the researchers suggested. Among the entire group, 47% said that both nurses and doctors did not seem to “really care”. While 61% gave neutral opinions regarding how well ER doctors helped with managing pain.


Differences in views of ER and regular care providers show a need for better communication. Cooperation  between these two groups also needs improvement, the scientists wrote. They also noted that “usual care” doctors were not always part of the hospitals. This occurred where ER care was given to patients.

“As found in the present study, comfort with a usual clinician can enhance individuals’ views of their quality of care and may provide the necessary relationship from which to improve outcomes,” they wrote. “It is equally important that strategies be implemented to enhance communication. Especially between the usual clinician and ED providers to improve trust, decrease stigma, and increase satisfaction with pain management.”

They added that the results of their survey, and the needs it identified, inform three projects aimed at improving care in SCD.

One focuses on ER room care in addressing a pain crisis. Another is exploring how to best identify and engage patients who are not receiving adequate care. The final project is looking into ways of using positive patient-clinician relationships to up the use of hydroxyurea and following treatment.

Find the original article at the website above or read more articles on the ER here.


SC Warrior