The definition of chronic pain will feel familiar to any chronic pancreatitis patient: ongoing or recurrent pain, lasting beyond the usual course of acute illness or injury or more than 3 to 6 months, and adversely affecting the individual’s well-being. In fact, this type of pain—persistent, intense, debilitating—is a defining feature of chronic pancreatitis. Mission: Cure’s Patient Experience Survey identified this pain as the primary symptom affecting patients’ day-to-day lives.
The Agonizing Burdens of Chronic Pain
Chronic pain affects more than 100 million American adults, including patients suffering from chronic pancreatitis. This number is growing. The burden of chronic pain already eclipses the burden of diabetes, heart disease, and cancer combined.Â
Yet chronic pain is difficult to treat and manage. This is partially because the pain system is extremely complex. Research shows that chronic pain does not simply affect the parts of the body experiencing pain. It actually changes the brain.Â
I’m a pain specialist, so I see every day what this means for my patients. Chronic pain is not just about aching bodies. It affects patients’ emotions, activities, and relationships—virtually every aspect of their daily lives. Half of patients with chronic pain suffer from anxiety or depression. Chronic pain prevents patients from spending time with their kids, enjoying the company of friends, fulfilling their responsibilities at work. Families suffer too. When children are in chronic pain, their parents are often consumed by worry, anxiety, or fear.
Today we understand that three factors influence the way we perceive pain: biological (such as our sex or whether we’ve been through puberty), psychological (such as our beliefs, moods, or styles of coping), and social (such as our cultural backgrounds or income levels). What does this mean? In responding to chronic pain, we must take a comprehensive approach that addresses all of these components.
How should doctors tackle chronic pain?
Here’s how I believe we should address chronic pain, given what we now understand. The first step is assessment. It begins with evaluating the location of the pain, how severe it is, how long it lasts—in other words, asking detailed questions about the nature of the pain itself.Â
New techniques allow us to measure how the body responds to pain, which can help us decide how to manage it. Next is assessing the impacts of pain. This is new, and essential, given all we’ve learned about the social and psychological effects of pain. Any patient with chronic pain should be screened for depression and anxiety because they occur so frequently.
The next step should be a treatment program that draws on many disciplines. An ideal program would include:
- Education about chronic pain
- Medication
- Physical therapy
- Alternative therapies
- Academic support for children
- And self-management techniques
Self-management allows patients to minimize the impact of pain on their health and daily life.
Managing Your Own Pain
I want to focus on that last item: self-management. Self-management refers to a comprehensive set of psychological techniques that empowers patients to tackle their own pain. Self-management programs educate patients about chronic pain and teach strategies for managing pain symptoms, such as relaxation techniques. These programs help patients think about pain in a different way, which reduces fear and panic about the pain. Patients say they feel less likely to go to the hospital for pain when they can think more rationally about it. Self-management programs also help patients resume activities they value—for instance, helping them to re-engage in physical activities. Sometimes they target a particular issue, such as sleep. Self-management is a comprehensive approach, considering patients’ lifestyles and emotional and social support needs, reminding patients they are not alone and that there are a lot of other people struggling with the same thing.
There is a strong research base—around 100 studies—on the effects of psychological therapies on chronic pain in adults, finding moderate improvements in patients’ disability, mood, and catastrophic thinking about their pain. My colleagues and I reviewed 43 randomized control trials of adolescents with chronic pain and found small to moderate benefits in reducing pain intensity, pain frequency, disability, and anxiety, showing that these therapies are helpful for people of all ages.
A limitation of the research base is its lack of published studies on pain interventions specifically for chronic pancreatitis. But there’s good news: two current studies are addressing chronic pancreatitis pain management.
Pain Management on Your Computer or Mobile Phone
There is a severe shortage of interdisciplinary pain facilities, especially for children, with only about one facility per state. Waiting lists are long. Despite the urgent need, only about 5 percent of kids with chronic pain, and very few adults, get the psychological treatment we know could help their pain.Â
Fortunately, technology offers a way for people to get psychological care without going to a psychologist by bringing pain care directly to patients. For 15 years, I’ve been working on technology to teach self-management techniques, recently focusing on chronic pancreatitis. I’ve helped launch two trials of web-based methods, one each for children and adults.
The second program is for adults 18 and older with chronic pancreatitis. It has been adapted for pancreatitis patients from an Australian program, the Pain Course. The Pancreatic Pain Course has five lessons that teach self-management, as well as vignettes of real patients. The Mayo Clinic and Seattle Children’s Research Institute are evaluating it; their trial is also open for enrollment.
Current Trials of Self-Management Technologies for Pain in Chronic Pancreatitis
Enrollment criteria:
- Children between 10 to 17 years old
- Suffering from chronic pancreatitis
- Parent and child have access to the Internet
Key Takeways
- Chronic pain from pancreatitis takes a major toll on patients and their loved ones.
- To effectively treat chronic pancreatitis pain, we need to address the symptoms as well as the impact of pain on patients’ lives.
- One piece of the solution is self-management, which involves education, lifestyle changes, pain coping skills, and emotional and social support.
- Computer and smartphone technologies can be used to teach self-management to patients who lack access to interdisciplinary pain facilities.
- There are self-management apps specifically for pancreatitis pain and clinical trials for children and adults to determine how effective they are.
Mission: Cure thanks Dr. Palermo for sharing her insights on managing chronic pain. We’re heartened by the growing interest in developing better treatments for pancreatitis pain and are working hard to persuade researchers and funders to devote resources to pancreatitis patients. Dr. Palermo can be reached at palermolab@seattlechildrens.org.
