Diagnostic Uncertainty in Pediatric Chronic Pain

Brought to You by Creative Healing for Youth in Pain's Parenting Blog

Lonnie Zeltzer, MD
April 24, 2023 / 5 mins read

An adolescent named Sheila develops stomach pain – as does the whole family – from a virus that hits everyone. After several days, everyone gets better – but Sheila still has stomach pain, nausea, and both diarrhea and constipation. She feels miserable and hasn’t been to school for a week because of her symptoms. Her stomach pain is worse at night, so she is not sleeping well. She is tired during the day, and has reduced her eating and drinking because every time she eats, she develops severe pain. Her pain is now continuous and, at times, gets really severe.

Her parents have taken her to the pediatrician, who thinks she may be constipated and recommends Miralax. Sheila takes the Miralax, but has diarrhea and stomach cramping, and feels worse. Now it is almost two weeks of missed school. Sheila is afraid to eat because eating causes stomach pain. She has been evaluated by many tests conducted by a pediatric gastroenterologist, and is diagnosed with CIBO and put on an antibiotic. After the course of the antibiotic, her CIBO is gone, but not her abdominal pain.

Now it is more than three weeks of missed school. Sheila is eating minimal amounts of food and water, losing weight, and feeling more tired and miserable. She is getting anxious about how much school she is missing, yet she is too ill to do any schoolwork at home. She is losing weight and has been diagnosed with avoidant/restrictive food intake disorder (ARFID). Sheila undergoes endoscopy/colonoscopy/pill CAM, and a myriad of other tests – the results of which are normal. She has tried many medications, but nothing is helping.

Sheila is brought to other gastroenterologists for second and third opinions, and to neurologists to treat “abdominal migraine,” but nothing is helping. Her parents are told that Sheila likely has Irritable Bowel Syndrome (IBS), but they are unclear on what this really is and why nothing is working. It seems that none of the doctors can figure out what is causing Sheila’s extreme pain. By this time, she has lost a lot of weight, and doctors are suggesting an eating disorders program referral.

Diagnostic Uncertainty

How did all of this develop and what is causing her symptoms? How can these symptoms be fixed? Sheila and her parents begin to feel that the doctors do not know the cause of the pain and thus they do not know what to do to “fix it.” In other words, there is “diagnostic uncertainty” regarding the cause of Sheila’s chronic pain.

How do different families experience this? It has been shown that over one-third of parents and teens seeking help for a teen’s chronic pain are left with feelings of “diagnostic uncertainty.” Some parents go to the Internet and look up recommendations by other parents and online marketing of “miracle cures” by practitioners. They may find special programs that are not science-backed and typically cost a lot of money. But parents are desperate because their child is suffering and no one seems to have the answer to solve the problem. Such teens often feel invalidated by doctors who recommend that they see a psychotherapist or psychiatrist, but do not give them understandable explanations about how this will help “fix the pain problem.”

Chronic pain impacts about 25% of teens and is associated with about $19 billion USD in annual health expenditures (Groenewald et al., 2015). If chronic pain is not addressed during adolescence, it can become a lifelong condition with associated mental health problems like PTSD, anxiety, depression, suicidality, and opioid misuse (Vinall et al., 2016; Groenewald et al., 2019). Research has shown that a parent’s own anxiety about their child’s pain – and their own tolerance of “diagnostic uncertainty” – contribute to their child’s chronic pain, their child’s fear of pain, and pain-related limitation of function (Neville et al., 2019, Neville et al., 2020, Tanna et al., 2020).

Clearly clinicians need to be better at explaining chronic pain in a way that makes sense to the teen and to the parents. The teen/parent dyad needs to feel a sense of trust in the clinician. Parents need to be mindful that their worries about “what might be missing” do not lead to catastrophizing, “diagnostic- and treatment-seeking behavior,” and thus further worsening their child’s pain and function. Family approaches that are aimed at teens with chronic pain and parent responses work best for optimal outcomes.

For further reference:

Groenewald, C. B., Law, E. F., Fisher E., Beals-Erickson, S. E., & Palermo, T. M. (2019). Associations between adolescent chronic pain and prescription opioid misuse in adulthood. The Journal of Pain, 20(1), 28–37. https://doi.org/10.1016/j.jpain.2018.07.007

Groenewald, C. B., Wright, D. R., & Palermo, T. M. (2015). Health care expenditures associated with pediatric pain-related conditions in the United States: PAIN, 156(5), 951–957. https://doi.org/10.1097/j.pain.0000000000000137

Neville, A., Jordan, A., Beveridge, J. K., Pincus, T., & Noel, M. (2019). Diagnostic uncertainty in youth with chronic pain and their parents. The Journal of Pain, 20(9), 1080–1090. https://doi.org/10.1016/j.jpain.2019.03.004

Neville, A., Jordan, A., Pincus, T., Nania, C., Schulte, F., Yeates, K. O., & Noel, M. (2020). Diagnostic uncertainty in pediatric chronic pain: nature, prevalence, and consequences. Pain Reports, 5(6).

Tanna, V., Heathcote, L. C., Heirich, M. S., Rush, G., Neville, A., Noel, M., Pate, J. W., & Simons, L. E. (2020). Something else going on? Diagnostic uncertainty in children with chronic pain and their parents. Children, 7(10), 165.

Vinall, J., Pavlova, M., Asmundson, G., Rasic, N., & Noel, M. (2016). Mental health comorbidities in pediatric chronic pain: A narrative review of epidemiology, models, neurobiological mechanisms and treatment. Children, 3(4), 40. https://doi.org/10.3390/children3040040