Biopsychosocial model could improve quality of care for patients with sickle cell disease
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Sickle cell disease is known to be associated with severe pain, but the current care model primarily focuses on acute vaso-occlusive pain.
A perspective published in The New England Journal of Medicine proposed a shift to a biopsychosocial model that would address other types of chronic daily pain patients with sickle cell disease face.
“Sickle cell disease damages other parts of these patients’ bodies — their hips, for example — and then they develop chronic pain that isn’t necessarily related to those acute episodes,” Robert Cronin, MD, MS, associate professor of internal medicine and biomedical informatics in the division of general internal medicine at The Ohio State University Wexner Medical Center, told Healio. “We need to view sickle cell disease in a different way in terms of chronic pain and start to use some of the strategies that are used in other diseases.”
Cronin and Janet E. Childerhose, PhD, a medical anthropologist and bioethics researcher in the division of general internal medicine at The Ohio State University, co-wrote the perspective with colleagues Maryanna D. Klatt, PhD, and Andrew Schamess, MD. They spoke with Healio about the lack of awareness around chronic pain, the need to address depression and mental health of these patients, and the ongoing racial biases patients with sickle cell disease encounter in the health care system.
Healio: What is missing in the way sickle cell disease is treated?
Cronin: Dr. Schamess and I are primary care providers, and we’ve been caring for patients with sickle cell disease for 8 to 10 years. We’ve seen the chronic pain that these patients live with. ASH has been working to increase the focus and education around these chronic pain issues in sickle cell disease. It’s a whole new world, because not only do we have this chronic pain that is similar to that of other diseases, there are also acute vaso-occlusive pain episodes that come in and disrupt everything. So, providers need to be able to distinguish chronic pain from acute pain. It can be very challenging.
Healio: What are some less-well-known chronic pain issues in sickle cell disease?
Cronin: Patients often get arthritis and can have other rheumatologic problems. They also can develop other diseases and complications, including mental health problems. Depression not only affects a person’s mental health, but is often associated with and can worsen pain. We know patients with sickle cell disease are predisposed to depression — studies have shown that up to 40% of people with sickle cell disease have depression.
Childerhose: It’s not just pain that causes depression in these patients. Patients have had serious life and career interruptions. If a pain episode comes up, they may have to abandon their plans for that day. This can put stress on relationships, including intimate relationships. But it’s not just their daily or weekly routines that are affected. A large proportion of patients we interviewed had to abandon successful careers or plans to go to school. That also leads to depression.
Healio: Sickle cell disease is more prevalent among Black individuals. Do racial biases impact on the way chronic pain is handled in these patients?
Cronin: There are two levels to this disease. One is the racial level, where these primarily African-American patients are seen as pain seekers because of prejudices about race and pain. Then there is a stigma around sickle cell disease that has been pervasive throughout the health care system for many years. Patients with sickle cell disease are very attuned to their pain and to strategies to mitigate that pain. They can look like they aren’t in a lot of pain even though their pain may be excruciating. So, these folks get labeled as drug seekers. Structural racism and other issues in the health care system make it more challenging for people with sickle cell disease to get the appropriate care.
Childerhose: We have the two longstanding biases that Rob mentioned. But there’s a third event, which is the pendulum swing around opioids. Patients with sickle cell disease might have a pain plan they’ve established with their primary care provider or specialist, and they might be used to receiving opioids. However, when they come into a setting that isn’t their home environment, such as an ED or [immediate care center], they might be speaking with a provider who isn’t familiar with their pain plan. You can see where this can cause conflict and distress, not only for patients, but also for providers.
Healio: What should be done to improve care for patients with sickle cell disease pain?
Cronin: We need to change the way we provide care. The biopsychosocial model considers the biological, psychological and social pieces of sickle cell disease. The biological components include vaso-occlusive pain episodes, arthritis and other damage to the musculoskeletal system, as well as nerve damage from chronic pain. The psychological components relate to different types of mental health issues, like PTSD and trauma that can influence pain. Then you have the social piece, especially as patients transition from pediatric to adult care. That can be very challenging.
Changes in care will rely on improved resources for treating sickle cell disease. We need research funding so we can understand what types of treatments and teams would be most beneficial. We also need clinical resources. In my practice, we’ve got a sickle cell disease provider and a primary care provider. We do not have a psychologist. We need multidisciplinary teams to address sickle cell disease holistically. The funding and resources need to be there for that.
Childerhose: There are also some small steps providers can take. One of those steps is simply to listen to patients. This is what our patients are telling us. They often put off going into care settings for acute pain because they know what’s waiting for them. The irony is that these settings are among the best resources for them. When they come to the ED or [immediate care center], they want to have a conversation with the provider who’s seeing them. They want the provider to ask them about their pain plan. It’s really about humanizing that clinical encounter with these patients.
We also need more education. We’ve known about the problem of undereducation and undertraining of residents for pain management for a long time. But this requires more than a change to health care systems or the medical curriculum. We need a cultural shift, because we collectively stigmatize pain in our society. I think we’re a long way from accepting the fundamental dilemma that pain is part of the human condition, but we also have to treat it. That’s the bigger picture here.
Healio: How can hematologists and oncologists help improve sickle cell disease care?
Cronin: The biggest thing is to continue to empower and advocate for the population. We also must be aware of our own potential biases toward this population, including what we saw in our own training that might shape the way we care for them. Also, hematologists and oncologists should try to create partnerships with primary care physicians and psychologists. It’s a challenge, due to the lack of primary care and mental health providers in the community. However, it is important to keep trying to create those bridges.
It’s essential to empower patients. They know their disease, they know their pain, and they know what they need. Although they might run into challenges with the system, it is essential that they have an important foundation of knowledge of their disease and empowerment.
For more information:
Janet E. Childerhose, PhD, can be reached at The Ohio State University Wexner Medical Center, 2050 Kenny Road, Columbus, OH 43212; email: janet.childerhose@osumc.edu. Robert Cronin, MD, MS, can be reached at The Ohio State University Wexner Medical Center, 3691 Ridge Mill Drive, Hilliard, OH 43026; email: robert.cronin@osumc.edu.
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