Advancing Patient Centered Assessment to Reduce Disparities in Pediatric Primary Chronic Pain across the Continuum of Care

One in four children experience chronic pain worldwide. Primary chronic pain is the most common type of chronic pain in childhood and is associated with negative impact on physical, psychological, and social functioning. Many children have mental health symptoms (e.g., anxiety, depression, insomnia) which impact on their pain experience and are associated with poor prognosis. Identification and treatment of pediatric chronic pain is unequal across groups distinguished by gender, race, ethnicity, language of care, insurance status, and disability status. To date, little is known about how chronic pain is identified and treated across the continuum of care (primary care to tertiary care) and how treatments can be prioritized to address complex mental health comorbidities.

Planning phase aims:
– Establish patient partner group; Establish partnerships and infrastructure among clinicians, researchers, and patient partners
– Create the technical, regulatory, scientific, and administrative infrastructures
– Finalize cohort discovery/identification of children with primary chronic pain
– Test feasibility of recruitment procedures
– Refine data collection instruments

Scale Up Phase:
1. Identify disparities in receipt of pain care across clinical and sociodemographic characteristics of children with primary chronic pain across the continuum of care [methods: EMR data]
2. Conduct longitudinal follow up over one year to identify disparities in pain and mental health outcomes. Identify the progression of chronic pain and comorbidities in children across the continuum of care, and examine developmental (e.g., pubertal development), psychological (e.g., emotional regulation), and socioenvironmental predictors [methods: prospective data collection using patient-reported outcomes and ecological momentary assessment]
3. Develop and validate measures of patient global overall change for pediatric chronic pain and determine clinically meaningful changes for individual patients [methods: content solicitation interviews with diverse individuals with lived experience, measure item development, item response theory, validation in large sample]