Pediatric chronic pain affects up to 1 in 3 youth, and over 40% of adults with chronic lower back pain experience diagnostic uncertainty (DU). However, there is little research about how DU affects youth.

On November 25th, 2020, Pain Reports published “Diagnostic uncertainty in pediatric chronic pain: nature, prevalence, and consequences,” a research study led by Alexandra Neville, a Ph.D. student in clinical psychology at the University of Calgary.

DU is the perception that a label or an explanation for a health problem is missing or inaccurate. Patients and parents who experience DU feel that there is something else happening with the pain. 

“For many children with chronic pain, they are often given a diagnosis without an underlying pathology or reason for their pain,” said Neville. Patients can undergo a series of tests and investigations but are still often diagnosed as ‘idiopathic chronic pain,’ meaning there is no identifiable cause.

According to Neville, “this is why, for many families, the journey of having chronic pain is not straightforward.”

This quantitative study gathered information from a tertiary-level pediatric pain program in Canada, with 174 pediatric pain patients, each accompanied by one parent. Researchers asked the participants about their pain intensity, interference, fear of pain, health-related quality of life (HRQoL), and pain catastrophizing in a series of questionnaires, reports, and forms.

From the study, 57.4% of youth and 53.8% parents felt they were not given a clear label or diagnosis for pain, 75.1% children and 57.1% of parents felt they were not given a clear explanation about why they have pain, and 30.5% children and 27.5% parents experienced DU.

“A diagnosis of chronic pain is described by families as a diagnosis of exclusion,” said Neville. 

While youth DU was linked to pain catastrophizing, parent DU was linked to greater youth pain.

“We found that diagnostic uncertainty is very common among children with chronic pain, both among children and parents themselves,” said Neville; “even after a diagnosis is provided, many children and parents believe that there’s something else happening with their chronic pain that doctors haven’t found out about yet.”

According to Neville, “understanding children’s journey through having pediatric chronic pain is important so we can improve care for the children, involving a multidisciplinary team approach.”

Since 2004, Children’s Hospital and Clinics in Minneapolis, Minnesota, USA, focused on an interdisciplinary approach to treat pediatric chronic pain. In a review published in December 2016 by Children, a peer-reviewed international journal of pediatrics, the researchers “believe that an improved understanding, definition and approach to treating chronic childhood and adolescent pain represent important steps towards optimizing the clinical care of pediatric pain patients” (Friedrichsdorf et al).

The researchers reviewed current chronic pain terminology, medications used to treat pediatric chronic pain, and the role of pain catastrophizing.

“Pain catastrophizing is the tendency to magnify or ruminate about the threat value of pain, and feel helpless in the face of pain,” said Neville, “it’s commonly a predictor of worse pain outcomes for children.” When patients catastrophize more, their pain worsens.

The review shows that pain-related fear should be a therapeutic target to reduce pain-related disability.

In Children’s Hospitals and Clinics of Minnesota’s interdisciplinary model, they combine rehabilitation, integrative medicine, psychology, and normalizing the patient’s daily life (sports, social life, sleep, and school) with medication.

The process begins with a 90-minute multidisciplinary intake interview with a physical therapist, psychologist, social worker, pain physician, and advanced nurse practitioner, followed by a clinical examination, a physical therapy evaluation, a psychological evaluation. After the medical professionals meet with the parents separately, a clinical team meets to discuss results. Finally, the patient and family have a 60-minute exit interview about recommendations and treatment plans.

At the intake, 16% of pediatric patients believed they could be pain-free. This number increased to 92% by the exit interview.

The rehabilitative pain program modalities include physical therapy, integrative medicine (e.g yoga, acupuncture), psychological intervention to target pain-related fears and catastrophizing, normalizing daily life plans, parent coaching, and necessary medication.

Reviewing the clinic’s data from 2007-2009, 2010, and 2014, 83% and 92% of new patients follow rehabilitative treatment recommendations after their initial intake. From that, 67-79% report that they are mostly pain-free. These findings reinforce the need to address and treat chronic pain in children and adolescents, and this interdisciplinary pediatric pain management practice successfully mitigated or resolved pediatric chronic pain.

Neville notes that communication and understanding in the clinical encounter are crucial in guiding the experience of diagnostic uncertainty. Without proper guidance, pain catastrophizing can take a greater toll on the body and mind.

“There’s just so much uncertainty in the journey of having pediatric chronic pain,” said Neville, “the clinical encounter is really important for children and families.”