Pain is a taboo topic at Mayo’s Pediatric Pain Rehabilitation Program even though patients have had their young lives ransacked by chronic physical suffering. Many have been isolated at home because they were in too much pain to attend school or participate in sports and other activities.
“After the first few days, we don’t focus on the pain, and we encourage patients not to talk or think about their pain,” says Cynthia Harbeck-Weber, PhD, clinical director.
Instead, the hospital-based outpatient program focuses on getting adolescents and young adults, ages 13 to 24, back to full functioning. Each patient works with Mayo staff to develop individualized goals and find balance in their lives, and all are encouraged to go to school full-time, socialize, help with family chores and participate in extracurricular activities — in other words, live the lives of typical adolescents.
Since 2008, more than 1,400 patients have gone through the program, which provides intensive physical, occupational and behavioral therapy. Most arrive with substantial disabilities associated with various types of chronic pain, from migraines and fibromyalgia to chronic regional pain syndrome, which is severe pain affecting one limb often after an injury. Some arrive in wheelchairs or on crutches, and approximately 14 to 16 percent are on prescription opioids. Not surprisingly, many are depressed.
Yet, by the end of the three-week program, which is held at the Rochester, Minn. Mayo Clinic campus, the majority show substantial improvements. A September 2017 study found that self-reported functional disability scores improved by 67 percent (from a score of 27 to 9) across 1,000 patients, and depression levels fell by 48 percent. Most patients on opioids were weaned off the drugs before or soon after they finished the program.
Treating pain as a part of life
The turnaround stories of patients help bring the program’s results to life. Take, for instance, Marissa Koscielski, a high school gymnast who became homebound in a wheelchair from back pain and a loss of feeling in her legs. Thanks to what she learned at Mayo, Koscielski is now a graduate student who regularly logs eight-mile runs.
“I have the best job in the world,” says Harbeck-Weber. “Kids come in who are really struggling and then they do well in the program and go on to these really great lives.”
What are the keys to the program’s success? Harbeck-Weber points to a number of factors. One is the emphasis on returning to full functioning. “Our program is based on a cognitive-behavioral therapy [CBT] model, which means we help the teenagers look at how they think about their pain and how they behave when they have pain.”
Culturally, Americans tend to treat chronic and acute pain alike with rest and medication, Harbeck-Weber says. But chronic pain doesn’t ease with rest. Many adolescents with chronic pain are treated successfully with standard outpatient care, including physical therapy. But a minority find no relief from traditional approaches, and may even worsen.
One culprit may be a nervous system issue called “central sensitization,” says Harbeck-Weber, who is a psychologist. “When people have chronic pain, the nerves that transmit pain become really good at transmitting pain. Even things that do not tend to hurt become painful for people with central sensitization. Even thinking about the pain can keep that pain neural network firing.”
Providing comprehensive treatments
The three-week Mayo program is designed to break this pain cycle. Each week, patients are engaged from 8 a.m. to 4:30 p.m. Monday through Friday in different therapies, including:
· Physical therapy to help patients get stronger, build stamina, function despite pain and ease fears related to movement, which are common but debilitating in people with chronic pain
· Biofeedback and relaxation therapy to help patients recognize physiological processes related to pain (e.g., breathing rate, muscle tension) and use various relaxation approaches to control pain.
· Recreation and social activities to ensure patients have fun and get their minds off their pain.
· Sleep hygiene to help patients get a healthy night’s sleep so they can be active during the day.
· Medication management to help adolescents taper off any prescription pain medications they may be on, as clinically appropriate.
· Individual behavioral therapy framed around each patient’s specific treatment goals, as well as group therapy and education.
This interdisciplinary approach is a core strength of the program, says Harbeck-Weber. So are the social events and group therapy sessions with peers. About 16 patients are attending the program at any one time. “It’s not just being with people their own age, but also people who are going through something similar. From a developmental perspective, friendships are a really important part of an adolescent’s life.”
Another success factor is family involvement. Recognizing the importance of parenting style and family dynamics in a patient’s rehabilitation, Mayo requires at least one parent to join their child for the three weeks. Parents receive about 60 hours of CBT skills training to help them learn how to encourage their children to be active and decrease their own anxieties about their child’s condition. “We want the parents to be learning the same concepts as the kids so they can be supportive,” says Harbeck-Weber.
One challenge with Mayo’s program is the three-week commitment. It may be difficult for some families to uproot and travel to Rochester for three weeks. Mayo has worked hard to educate insurance companies about the benefits of the approach. As a result, insurance covers the program about 92 percent of the time. But the trip may still be financially or logistically out-of-reach of some families.
Mayo does offer a two-day version of the program, which may be enough for adolescents who have mild pain or have not had chronic pain for a lengthy period of time.