In a Western Pennsylvania clinic, patients receive treatment for a blood disorder — and the emotional challenges that come from living with the inherited condition.
UPMC’s Benign Hematology clinic treats those suffering from sickle cell disease. And for patients who agree to it, Dr. Charles R. Jonassaint, Ph.D., steps in to provide a different kind of care: helping people cope with emotional challenges surrounding their disease, and life in general.
This is what it means to offer “integrated care”: caring for the whole person, and not just the patient’s physical symptoms, says Jonassaint.
“For the most part, it's a collaboration between medical and psychological behavioral treatment,” says Jonassaint, a practicing clinical health psychologist. “In our clinic, integration really means that I work with the medical providers to ensure that the psychosocial needs of our patients get met.”
People with sickle cell disorder often feel depressed, stressed out, and anxious. A psychologist can really help them with this part of the struggle, says Jonassaint, who is also an assistant professor of medicine, social work, and clinical and translational science at the University of Pittsburgh.
“For a lot of patients, psychological symptoms are manifesting as physical symptoms. A lot of us have had a panic attack before – you can literally feel like you’re dying, and it’s all psychological.” – Dr. Charles R. Jonassaint
“I think for a lot of our patients, they’re not used to seeing a therapist. It’s hard for them to understand what the role is,” he says.
“For the patients who are receptive, it is absolutely an amazing opportunity, and particularly helpful.”
The patient’s feeling, Jonassaint says, is: “You’re addressing me as a whole person and not just a bag to throw medications in.”
Perhaps 90 percent of the disease’s management is behavioral, rather than medicinal, Jonassaint says, and that makes a psychologist particularly valuable.
An inherited blood disorder, sickle cell disease affects about 100,000 Americans, according to the Centers for Disease Control and Prevention. The hemoglobin, or protein, in the red blood cells is damaged and can’t carry oxygen to the tissues.
At the clinic, physicians there prescribe treatment and help people manage the difficult symptoms, like shortness of breath, pain, brain fog, fatigue, and cell death.
Sickle cell patients need to live a lifestyle with limited stress and make healthy choices, like avoiding smoking and drinking. Stress and poor mental health contribute to poor disease outcomes, Jonassaint says, and patients with depression and anxiety are more likely to be hospitalized.
Jonassaint often intervenes during tense moments with patients.
“I will help talk patients through it,” he says. “I can sit with them longer than the physician can. … I will listen to patients and listen to their side. Usually that calms them down. I come up with a plan and speak to the provider.”
At the clinic, Jonassaint has about 60 patients who are part of the cognitive behavioral therapy program. Some patients seek behavioral treatment elsewhere, and some are not interested in psychological help at all, he says.
Jonassaint – who spends about a half day at the clinic each week, and the rest of the time doing research and teaching psychology – enters the room while the patient is talking with the doctor.
When a patient is struggling with mental health, the hematologist will sometimes prescribe antidepressants. Jonassaint might recommend certain drugs, but he tries to get them referred to a psychiatrist.
Mental health can have a notable effect on someone’s physical health, Jonassaint says, so it is important to take care of our emotions, as well as our bodies.
“For a lot of patients, psychological symptoms are manifesting as physical symptoms,” he says. “A lot of us have had a panic attack before – you can literally feel like you’re dying, and it’s all psychological.”
Jonassaint says he’d like to see more investment in more collaborative, integrated care programs.
“I think that it could increase longevity and decrease patient disease complications,” he says. “I think the impact is great.”
