Most people with sickle cell disease (SCD) in the U.S. are satisfied with their primary care practitioners, 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 delayed or avoided needed emergency care in the past year.
The study based on these responses, “Perceptions of US Adolescents and Adults With Sickle Cell Disease on Their Quality of Care” was published in the journal JAMA Network Open,
SCD disproportionately affects African-Americans and Hispanics, many of whom are of lower socioeconomic status and with poorer access to medical care. Prior studies indicate that a substantial number of SCD patients do not receive adequate treatment and or 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 noted.
Researchers at institutions across the U.S. surveyed adolescents and adults patients, using questionnaires given at office visits in 2018, regarding how they perceived the quality of their medical care.
Conducted by the Sickle Cell Disease Implementation Consortium, the study surveyed 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 reported their perceptions of care in four areas: pain interference and experience, quality of care, social determinants of health, and self-efficacy regarding SCD.
Most (287 or 66%) reported needing an emergency hospital visit for pain over the past year, and 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” emergency visit experiences contributed to their avoiding care.
In total, 254 respondents also said they avoided or delayed emergency medical care for severe pain episodes in the past year.
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 respondents (314 of 341, or 92.1%) said they were usually or always satisfied with their clinicians, and 82.5% were usually or always satisfied with care during scheduled appointments. More than half, 54.3%, also said their usual doctor “very much” knew how sickle cell affected their lives.
The one area in which these clinicians did not score as highly was in spending enough time with the patients; still, 66% of respondents rated their regular care experiences as the “most positive.”
Younger patients, those under age 19, tended to report more positive emergency care experiences than older ones, 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 emergency doctors helped with managing pain.
Differences in perceptions of emergency and regular care providers indicate a need to improve communication and cooperation in disease management between these two groups, the scientists wrote. They also noted that “usual care” doctors were not always part of the hospitals where emergency care was given to patients.
“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,” they wrote. “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 added that the results of their survey, and the needs it identified, are informing three consortium projects aimed at improving care in SCD.
One focuses on emergency 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 harnessing positive patient-clinician relationships to increase the use of hydroxyurea and treatment adherence.
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