Kathryn King, Ph.D., leads a new program designed to help patients with sickle cell disease manage psychological challenges.
Pain is as much a part of sickle cell disease as white lights are a part of Christmas. It’s what lands kids in the emergency room and hospital; severely affects their quality of life; and leaves them constantly on guard lest it return.
Less visible—but just as real—are the emotional, cognitive, and psychological burdens that accumulate over years of living with the condition.
Now, Children’s of Alabama has a new program designed to address the non-physical aspects of the disease. Funded by a generous donor and developed by pediatric psychologist Kathryn “Kate” King, Ph.D., the program’s aim is to help kids with mental health issues related not only to their disease but to the stress of growing up in today’s world.
“Our kids and teens with sickle cell experience a lot of different psychosocial issues,” King said. “But first and foremost, they’re kids and teens. There’s so much that comes up that’s not even related to their sickle cell. But then it ends up impacting their sickle cell.”
Like their peers, they experience anxiety, depressed mood, stress and the challenges of growing up. But layered on top is a disease marked by chronic pain, complex treatment regimens, frequent medical visits and, for some, cognitive effects related to the disease itself.
When Pain Becomes Chronic
Sickle cell pain is often thought of as acute flares that are treated and subside. But for many children and adolescents, King said, the pain becomes chronic. “It starts to become more frequent and the pain signaling becomes more like a faulty fire alarm,” she said, continuously going off even when there’s no smoke.
At that point, medication alone is often not enough.
So an important focus is boosting patients’ ability to cope with pain. That includes evidence-based strategies such as diaphragmatic breathing and guided imagery to calm the autonomic nervous system and reduce the intensity of pain signals.
And it works. Screening tools find patients’ pain scores dropping several points after using such strategies even before receiving pain medication, King said.
Equally important is helping kids and their families reframe the pain. Understanding when pain is severe enough to require escalation to the hospital and when it can be managed while continuing daily activities can reduce fear and help maintain normalcy.
Another focus is helping adolescents transition to self-management. This period during adolescence is known for high rates of treatment lapses and worsening outcomes as kids try to become more independent with this complex disease.
“They’re managing so many different treatments and medications” so adherence drops, King said. “It could be forgetfulness, because they can experience cognitive issues related to sickle cell, but sometimes it’s more about not wanting to feel different.”
King teaches her patients to use alarms and visual reminders to improve adherence, and she works with parents to help them understand when to hand over responsibility to their child. Some parents struggle to let go, she said, while others step back too quickly.
The goal is a gradual, scaffolded approach. “The parent can still function as the safety net, but the patient is progressively learning the needed skills to become their own safety net.”
King tries to see patients in conjunction with their medical appointments. She also follows them when they’re hospitalized and offers telehealth visits. With nearly 1,000 patients in Children’s sickle cell program and just one dedicated psychologist, however, demand far exceeds capacity. Currently, she sees about 20 patients a week, with plans to grow gradually.
“My goal is to extend to as many of those as I can,” she said. “But there’s just one of me.”
She’s also focused on tracking data for the program, including barriers and facilitators for care, as well as outcomes. She’d eventually like to publish on the program’s experience to help other hospitals start their own.
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