Unsatisfactory interactions with physicians affect sickle cell disease patients' trust in medical profession

Faculty at the Johns Hopkins Berman Institute of Bioethics have published a study that shows, among adults with sickle cell disease, that unsatisfactory interactions with health-care providers in the past affect their trust in the medical profession more broadly.

"Our research serves as a reminder to clinicians caring for sickle cell patients that simple things like listening to their patients can go a long way towards nurturing trust in what has been a historically strained relationship," says lead author Carlton Haywood Jr., Ph.D., an associate faculty member at the Berman Institute. The study is in the June issue of the Journal of General Internal Medicine.

The most commonly known symptoms of sickle cell disease are the chronic and acute pain attacks that occur when low oxygen in the body causes red blood cells to become rigid and misshapen. They then get stuck in blood vessels and deprive tissues throughout the body of the oxygen they need.

Powerful pain medicines such as morphine and Dilaudid are used to treat the intense and sudden episodes, called "pain crises." But physicians are reluctant to prescribe those narcotic medications liberally, as they can be highly addictive.

Adding to a doctor's wariness is that some with sickle cell disease are in and out of the hospital frequently, demanding drugs for pain that by its nature has no objective signs. Then, as Haywood points out, there's the reality that most people with the disease are African-American, and that many are of lower socioeconomic status. All of those factors can combine to inhibit trust building between the physician and the patient.

"I think both of those issues — race and class — interact with certain aspects of the culture of medicine," Haywood says. "The culture of medicine is such that, clinicians are already a little hesitant about prescribing some of these powerful opioid analgesics because they don't want patients to become addicted. I think that issues of race and class can make the situation even more complicated."

Haywood is one of the few African-American bioethicists in the country and has sickle cell disease himself. He examines issues of communication and trust between physicians and patients with the disease. Mary Catherine Beach, M.D., a core faculty member at the institute who also focuses on patient-physician communication, oversaw the study.

For their study, the researchers asked 95 adults with sickle cell disease how often they thought doctors and nurses listened to them carefully. Did providers give thorough explanations when needed and spend enough time with them? Did they show respect for what the patients had to say?

In their analysis, the researchers statistically controlled for other factors that might affect a person's perception of trust — including demographic information, education and even general levels of optimism — and they still found that lower trust in the medical profession was linked to poorer patient ratings of provider communication.

The researchers acknowledge that attitudinal factors could not be ruled out altogether. But they are nonetheless confident that their findings highlight the need for clinicians to do more to engender trust among sickle cell patients. "Trust is something that, in many cases, has to be earned," says Haywood, an assistant professor in the Division of Hematology at the Johns Hopkins School of Medicine. "You have to show that you are worthy of being trusted."

And because he has sickle cell disease, when he describes this challenge to physicians, it's also a personal request: "We should be working together, combining my knowledge of how the disease really impacts me, with your medical and biological knowledge, to come up with the best treatment plan for me. And unfortunately, a lot of sickle cell patients don't feel like their own expertise is being heeded."

The study, "The Association of Provider Communication with Trust among Adults with Sickle Cell Disease," builds upon other research that Haywood and Beach have conducted — along with Sophie Lanzkron, M.D., director of the Sickle Cell Center for Adults at Johns Hopkins — that looks at how a lack of trust might be the root of other problems facing patients with the condition.

Also this month, the Journal of Hospital Medicine will publish another study by the team that suggests that adult sickle cell patients who walked out of hospitals against a physician's advice might have done so because they experienced poor interaction with providers in the past.

And in February, the Journal of Health Care for the Poor and Underserved featured a study led by Lanzkron, and co-authored by Haywood, indicating that barriers on the clinician and patient side are limiting access to hydroxyurea — the first effective drug treatment for modifying the course of sickle cell anemia in the disease's 100-year history.

Sickle cell disease was the first genetic disease discovered in humans and is the most common condition detected by newborn screening (about one in every 2,500 babies born in the United States). Found in nearly all racial and ethnic groups, the disease is most common among African-Americans (approximately one in every 500).