Helping Children With Chronic Pain: A Conversation With Christine Sieberg

Christine Sieberg

Editor’s Note: Christine Sieberg, PhD, is an attending psychologist at Boston Children’s Hospital; Director and Co-founder of the Biobehavioral Pediatric Pain Lab at Boston Children’s Hospital; and an assistant professor of psychology in the Department of Psychiatry at Harvard Medical School.

She studies the bio-behavioral aspects of chronic pain in children. A major focus of her research is to identify young people who have changes in how their central nervous system processes pain-related information and who are at increased risk for unfavorable outcomes related to pain and for reduced benefits of pain treatment. She also examines the risk of chronic pain from a lifespan perspective, in both animals and people, with a focus on how early life experiences shape later pain outcomes, with an emphasis on surgical pain. She also studies chronic pelvic pain in young women with endometriosis.

In this RELIEF interview, Sieberg speaks with freelance writer Laura Kiesel to discuss her research, approaches to managing chronic pain in children, and much more. Below is an edited transcript of the conversation.

What motivated your decision as a psychologist to focus on chronic pain in children and adolescents?

I was an education major in college, so I liked working with young people. In graduate school, I worked in a child anxiety lab, and I really enjoyed that as well. I then began doing clinical rotations in pediatric health psychology and saw a lot of young people suffering from anxiety and chronic pain.

My dissertation focused on modifying a cognitive-behavioral treatment (CBT) and a treatment that combined both CBT and family-based approaches in a community sample of children with co-morbid [co-occurring] anxiety disorders and functional abdominal pain. What was novel about this work was addressing the question of whether treating anxiety in children with diagnosed anxiety disorders could also reduce abdominal pain; no one had really looked at that before. When I got my internship at Brown Medical School, one of my rotations also involved chronic pain management.

How did your academic background in education inform your approach to working with children with chronic pain?

Having a background working in school settings as an undergrad, with an emphasis on special education, helped me to better understand what would be needed when a child required accommodations at school because of their pain or other issues such as anxiety. Sometimes there are accompanying learning disabilities and a more intensive intervention is required.

As part of my master’s program in risk and prevention in children at Harvard University, I researched childhood trauma and became interested in how those experiences can shape future health outcomes. That’s what really launched me into my PhD.

You work with children who have what’s known as “central sensitization.” What is this, and why do some children develop it, while others don’t?

Central sensitization is when prolonged exposure to painful stimuli changes the nervous system. It is thought to be involved in the transition from acute to chronic pain. We don’t know as much about it in pediatric pain as we do in adults.

It’s kind of like the difference between having a software problem versus a hardware problem in your body. So perhaps an injury, illness or surgery might have started the pain—that’s the “hardware”—but the nervous system then took over and now dictates the pain regardless of whether that initial problem still exists—that’s the “software.” So the nervous system still perceives something negative happening in the body. This can be accompanied by physiological changes such as allodynia, a phenomenon where things that shouldn’t cause pain, such as brushing a cotton swab over an area of the body, cause extreme pain.

An increased vulnerability to stress, or having an anxious temperament, might be risk factors for developing central sensitization, whether in children or adults. But we don’t definitively know why some people go on to develop central sensitization after their initial illness or injury while others do not.

Are children more likely to be resilient to central sensitization because they are young?

Kids do have a more plastic nervous system, meaning that the nervous system is more malleable and easily influenced. So if we flood the nervous system with desensitization techniques and cognitive and physical therapies, there’s a good chance these approaches might completely resolve pain or at least reduce its severity. However, we also know that being exposed to pain as a child, especially if it’s left untreated, can have lifelong consequences and poor pain outcomes.

Boston Children’s Hospital has a very unique program you’ve worked at previously that offers intensive daily rehabilitation for children suffering from severe chronic pain. How does the program work and why has it been successful?

I worked at this program, the Mayo Family Pediatric Pain Rehabilitation Center (PPRC), until 2013, but when it opened in 2008, it was one of the only programs of its kind in the country. Luckily, since then, many more programs like it have popped up that follow a similar philosophy.

The program entails a three- to five-week partial hospital admission that includes eight hours a day of individual physical therapy, occupational therapy, and psychology sessions, as well as medical and nursing support. The afternoons involve group-based treatment and there is also a family-based session at the end of the day. The patients and their families do not sleep over so they can practice their skills in the real world setting.

The PPRC program is individually tailored to the patient in terms of what each person needs in those physical therapy, occupational therapy, and psychological domains, which is why it works so well. We’re really reprogramming the nervous system, and all of the interventional support really allows the children to improve their functioning in a safe space. If we can improve functioning, often patients will have decreased pain over time.

Your research shows that parents play a large role in their child’s ability to recover from chronic pain. What insight do you have for parents of children who are struggling with chronic pain?

Parenting a child with chronic pain is very stressful. As a parent, you always want to protect your child, and you don’t want to see them in pain. When a child’s pain is acute, it makes sense to allow the child to abstain from certain activities and maybe miss some school. But chronic pain is a beast that can take over the whole family because a parent’s natural instinct is to protect their child even though the child may need to experience some discomfort during rehabilitation in order to become functional again.

It’s important to include parents in their child’s treatment and to address their own distress of having a child with chronic pain and educate them on what is necessary to help their child improve.

A study you co-authored showed that the majority of children who participated in intensive pain rehabilitation responded to treatment. But how can these programs anticipate and address challenges of those less likely to respond?

During the psychological assessment conducted during intake, programs can try to better gauge whether the prospective patient and their family are really ready to undertake the effort necessary for success. They may not be, in which case some outpatient work that addresses why there is resistance to change can be helpful.

Sometimes parents are still questioning their child’s diagnosis and do not feel ready to engage in a functional restoration program. Ensuring that parents are more confident in their child’s need for the program, and that they and their child seem ready to undergo treatment and are well prepared for its challenges can make a difference.

Your research has also shown that children who took part in either an intensive day hospital pain rehabilitation program or in an outpatient treatment program experienced at least some improvement in their pain, but those in the former program reaped more benefits. For families who can only access outpatient care for their children, what can they do so that their child has the best possible outcome?

First, there are many more intensive day hospital or partial hospital programs available nowadays, especially compared to a decade ago, and fortunately that makes access more likely. However, outpatient care alone can be very effective. Since most insurance plans will not pay for an in-patient and/or partial hospital intensive program if you haven’t tried an outpatient program first, it can create a barrier because you have to “fail” an outpatient program first, though some exceptions can be made.

But outpatient care can still work really well for chronic pain, especially if pain has not severely impacted one’s functioning yet, and if the parents can also arrange for their child to receive cognitive behavioral therapy. Also, a focus on finding physical and occupational therapists who have knowledge of and experience with chronic pain management, especially desensitization techniques, might also improve outcomes.

There’s a strong correlation between experiencing trauma and abuse as a child and developing chronic pain, as some of your research has shown. Can you say a bit more about this, and what work in this area you are doing now?

In my work with patients I would sometimes see kids who had trauma; sometimes it’s disclosed, sometimes it’s not. A lot of this goes back to the idea of risk and resiliency factors and how much the nervous system can really take before it becomes overloaded, a concept known as allostatic load. Trauma may create more vulnerability in the nervous system so that a child is more at risk for developing chronic pain.

I’m doing some research now that analyzes retrospective reports of childhood traumatic events, beyond just sexual and emotional difficulties, to pinpoint more singular, traumatic events that could have happened to a child, like a natural disaster, a divorce, or even the death of a loved one. I’m doing this work in collaboration with the University of Michigan.

I’m also very interested in the concept of cumulative stress—things that have happened from childhood on, how patients rate the severity and significance of what they’ve experienced, and whether they kept it private or disclosed it to other people. There is the possibility that if you didn’t disclose it, then perhaps it’s more traumatic.

More recently, your research has focused on chronic pelvic pain resulting from endometriosis, a condition where the tissue that lines the uterus grows outside of the uterus. In particular, you are looking at the role of central sensitization in adolescent women with chronic pelvic pain from this condition. What have you found so far?

The standard treatment for most people with endometriosis is to surgically remove the tissue and follow up with hormonal treatment to suppress further worsening of the disease, and it’s thought this works about 70% of the time. But for those 30% of women who continue to have chronic pelvic pain, and even for the 70% who benefit from surgery, it seems that long-term pain outcomes are variable, with some women having relapses of the disease and chronic pelvic pain.

Right now we don’t actually have any specific treatments for endometriosis that target the nervous system. We need to develop such treatments, which could include physical therapy modalities as well as some other desensitization techniques. Cognitive behavioral therapy may also be beneficial in addition to drug treatment that more specifically targets the disease.

The Boston Center for Endometriosis is researching biomarkers [objective, measurable indicators of disease] in order to better understand the mechanisms contributing to endometriosis and chronic pelvic pain. If you don’t have biomarkers, it’s hard to develop a good drug that targets the disease and its specific symptoms.

In recent years you’ve become interested in the neurobiological aspects of pain and have been forging partnerships with scientists who study pain neurobiology. What types of projects in this area are you doing now?

These “academic marriages” are very important. I am receiving training and mentorship now in the genetics and neurobiology of pain thanks to a grant I received from the National Institutes of Health. Meanwhile, in partnership with others, I am looking at different classes of drugs for the treatment of co-morbid anxiety and pain.

I am also collecting data from a repository at the University of Michigan that focuses on stress and genetic studies. These studies analyze genes that increase the risk of pain in patients with different reported stress levels and surgical histories.

I am also an affiliated faculty member at the Center for Pain and the Brain (PAIN Research Group) under the direction of Dr. David Borsook, a research center utilizing brain imaging science to better understand pain processing and treatment. If we can better understand the underlying neural pathways involved in acute and chronic pain conditions, we can translate that research into clinical practices and therapies.

I am interested in exploring changes in the function and structure of the nervous system in patients with endometriosis and chronic pelvic pain and how alterations in the brain may be related to greater adverse psychological functioning and pain sensitivity in this population. It is my hope that the results of these academic marriages and partnerships will enhance our understanding of the neurobiology of endometriosis and chronic pelvic pain.

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