Throbbing. Sharp. Pounding. Dull. Stabbing. Cutting. Gnawing.” That’s how patients describe the pain of sickle cell disease.
While current guidelines call for patients to receive pain medications within an hour of arriving at a treatment center or emergency room (ER), that’s difficult to achieve in a busy emergency department (ED), said Jeffrey Lebensburger, D.O., MSPH, who directs the Cancer and Blood Disorders’ hematology section at Children’s of Alabama. This delay in pain relief allows the pain intensity to increase and may lead to a child requiring hospitalization. In addition, in this era of an opioid epidemic, more families report discrimination when they ask for opioids for pain and are accused of drug-seeking behavior.
That’s why Children’s started its own sickle cell pain clinic, Lebensburger said. It’s not just for patients in crisis. “About half our patients also experience daily, chronic pain,” he said.
The clinic has four main goals:
- Provide care in a familiar setting
- Reduce the number of hospitalizations
- Get the patient’s pain under control more quickly
- Provide non-medicine treatment strategies for pain
The clinic is run out of the regular pediatric hematology clinic with a dedicated nurse practitioner, Raven Myrick, CRNP. Patients can call a hotline or email the hematology team any time and get a same-day or next-day appointment. Eventually, the team would like to offer night hours.
“Our families appreciate being able to go to the clinic versus the ER,” Myrick said. “It’s a familiar, nonjudgmental atmosphere. It’s not our job to say if they are having pain or not. Our job is to make them feel comfortable and to show that we care.”
“It’s not a cure for their disease,” she said, “but the pain clinic gives them hope that someone is working to make them feel better.”
Virtual Reality as Treatment
The clinic uses Starlight Virtual Reality (VR) headsets, donated to Children’s of Alabama by the Starlight Children’s Foundation, to teach kids how to relax and breathe through the pain. Studies have found that VR can reduce pain sensation. When patients come to the clinic, they first spend at least 10 minutes with a VR deep breathing/visualization program. Then they can continue to use other programs as a distraction technique or even just watch movies. “Being able to watch Netflix in the virtual reality environment without cues from other people provides superior distraction to non-virtual reality distraction,” Lebensburger said. Then they go home with a list of relaxation apps to download on their phones.
Patients also receive pain kits to help with distraction, including items like squeezable balls and Silly Putty, as well as their own “tools,” such as action figures and trading cards that they can only play with during a pain crisis.
The clinic has seen more than 30 patients since it opened in Marchand had just three hospitalizations, which is “an amazing outcome for our patients,” Myrick said.
“We know our patients and are familiar with what works for them with use of our Individualized Pain Plans,” Myrick said.
Get more information about the Cancer and Blood
Disorders Program at Children’s of Alabama.
 Ballas SK, Gupta K, Adams-Graves P. Sickle cell pain: a critical reappraisal. Blood. 2012;120:3647-3656;