In a new report on pediatric pain in the British medical journal The Lancet, a commission of experts, including scientists, doctors, psychologists, parents and patients, challenged those who take care of children to end what they described as the common undertreatment of pain in children, starting at birth.
Isabel Jordan, of Squamish, British Columbia, took part as a parent partner, along with her son Zachary, 19, who has a genetic condition, and lives with chronic pain. “Pain matters with every child and at every intersection with the health care system,” she said. But for her son, “it didn’t matter with many providers, doctors, nurses, phlebotomists, and that made for worse outcomes.”
“The professionals had a wealth of knowledge and experience, but what they lacked was the knowledge of what was really impacting patients in day-to-day life, they didn’t know how impactful poorly managed procedural pain was to patients,” especially children like her son who have ongoing medical issues, Ms. Jordan said. “He’s got a rare disease and has had a lifetime of chronic pain and also procedure pain.”
Although we often pride ourselves, in pediatrics, on taking a kinder and gentler approach to our patients, pain experts feel that children’s pain is often taken for granted, and that simple and reliable strategies to mitigate it are disregarded; such as, for example, the 2015 World Health Organization recommendations that infants should be held by parents and perhaps breastfed during immunizations, and that distraction techniques should be used with older children.
Christopher Eccleston, a professor of pain science and medical psychology at the University of Bath, where he directs the Centre for Pain Research, was the lead author on the report. He became interested in pediatric pain through working with adults with chronic pain, he said, and realizing that many of them had pain going back into adolescence, which had not been treated.
Pain needs to be understood through a biopsychosocial model, the report argues, paying attention to individual history and individual sensation. Many different factors influence the intensity of pain, and also an individual child’s resilience, including genetic susceptibilities, neurological pathways, and also psychological factors and personal history.
Christine Sieberg, a clinical psychologist at Boston Children’s Hospital, where she is the director of the biobehavioral pediatric pain lab, and who was a co-author of the report, said that to present the biopsychosocial model of pain to an adolescent with chronic pain, she would start by acknowledging their frustration with tests that may have failed to uncover a specific cause, and validating that the pain is real. Often, she said in an email, patients have been told that the pain is in their head. “I usually say something like: ‘All pain is in your head! But that is because pain is brain-based. Let me explain why.’”
She might then use a metaphor to explain pain — that it warns of danger, but can also function, for example, like a car alarm going off when nothing is actually threatening the car — and making the connection to function: “Anything that turns up the volume in your nervous system will make pain signals louder. As the pain signals get louder, you will feel worse. We also know that when you can’t go to school, see friends, play sports or do the things you enjoy due to pain, your brain is getting the message that something is wrong and it will make the pain signals stronger because it thinks it is protecting you!”
The first overarching goal of the commission, then, was to make pain matter.
Dr. Eccleston said that pain needs to be understood as a problem in its own right, one that is often hidden. People may take pain more seriously when it is a symptom of some other illness, he said, but when pain itself is the problem, sufferers are stigmatized and silenced.
The second goal was to make pain understood. Over the past 25 years, Dr. Eccleston said, research has elucidated the pain system, including the peripheral and central neurological pathways involved, and also the psychological mechanisms. But taking account of a child’s individual needs means coming to terms with the complexity of pain pathways and the ways that they are affected by the child’s history, psychology and social situation.
The third goal was to make pain visible. “All pain can and should be assessed, every child has the right to have their pain measured,” Dr. Eccleston said. Even when a baby is too young to talk, or an older child is nonverbal, he said, there are ways to assess pain, from facial expression to physiological responses to measures of brain signals.
And the fourth goal is to make pain better, using psychological, pharmaceutical and physical interventions. Dr. Sieberg said that along with good research on the interventions, it’s essential to have more research that predicts which interventions will work for which children, looking at “the biopsychosocial factors that predict treatment response.” This will make it possible to work toward more individualized treatment.
The commission calls for further research to fill in gaps in our understanding, and cites a scarcity of trials looking at most known pain medications in children, and also a “pressing need for novel drug discovery,” in particular for drugs that relieve pain “but do not stimulate the reward system,” given concerns about opioids and their potential for misuse.
For the health care providers who drew blood from Zachary, Ms. Jordan said, each procedure was “a one-off, one needle poke, one IV or uncomfortable position.” But those pokes and pains and procedures were actually part of a lifetime of medical investigations. “He ended up with severe needle phobia that we had to deal with as it became clear he would be interacting with the health care system all his life,” she said.
He also developed chronic pain, and while his mother feels that some pain was inevitable as a consequence of his underlying genetic disease, she wonders whether all the needle pokes made it worse: “There is some evidence that babies that experience a lot of procedural pain, it can prime the pump for chronic pain, it makes me wonder whether his chronic pain would be as bad now, had we done better with his procedural pain.”
As she learned more about the research on pediatric pain, Ms. Jordan said, she came to understand that there was research that would have made her son’s life much easier, but it had not been implemented by the people taking care of him, and that she herself had not necessarily been using the best approaches when she tried to help her own child. “The whole time my son had pain and different kinds of pain, I didn’t have the right information to help him deal with it,” she said. “As a parent, that’s a terrible thing to find out.”
Evidence shows, for example, that reassuring children before procedures actually makes them more anxious, perhaps because it signals that the parent is concerned. More effective approaches to acute pain include distraction techniques, helping children learn visualization, and strategies like applying numbing cream before procedures. And working with chronic pain can mean applying all of these techniques and more in order to help children recover function.
You might say to an adolescent, Dr. Sieberg wrote, “We know from our research and working with lots of kids with pain that using multiple interventions at one time and flooding your nervous system will help. For example, some medications make your nerves a little bit quieter, while P.T. can help you get back to doing the things you love by retraining your nerves, and learning coping skills with a psychologist like me will help you to manage stress, which also calms down your nervous system.”
“As a culture, we structure pain to be a short experience and a diagnostic experience,” Dr. Eccleston said. When the pain becomes a problem in its own right, he said, “We turn away from that, we change the conversation.”
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