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Aim: Prior to July 2013, a solo medical specialist provided a pain management service 1.5-2 days/week to children and young people aged 0-19 years, and their families at John Hunter Children's Hospital, Newcastle, NSW. A new multidisciplinary children's complex pain team now continues that service. This study aimed to identify the demographic and clinical characteristics of children, young people and their families referred to a paediatric pain specialist in the 5.5 years prior to the establishment of a multidisciplinary service and to quantify anecdotal observations, determine service priorities and identify clinical improvement opportunities.Methods: A retrospective review of the medical records of all new patients seen between January 2008 and June 2013 was conducted. Data sets for patient demographics, clinical characteristics, service outputs and disposition at discharge were determined prior to data extraction.Results: A total of 114 children and young people aged between 7 days and 18 years (mean ± SD = 12.54 ± 3.6 years) were consecutively referred to the service. Many demographics are consistent with those previously reported; however, the number of children who identified as being of Aboriginal origin (11%), with rare diseases (28%), new diagnoses made (47%), child protection reports submitted (14%) and psychological morbidity in children (58%) and caregivers (38%) are new findings in the context of pain management and serve as indicators of the complex service needs of these patients and their families.Conclusion: The complexities encountered in this small cohort provide an indication of the time investment needed to understand and manage complex paediatric pain, especially in the contexts of complex families, time-poor general practitioners and under-resourced communities. [ABSTRACT FROM AUTHOR]

Abstract: Using the Australiasian electronic Persistent Pain Outcomes Collaboration, a binational pain registry collecting standardized clinical data from paediatric ePPOC (PaedsePPOC) and adult pain services (AdultePPOC), we explored and characterized nationally representative chronic pain phenotypes and associations with clinical and sociodemographic factors, health care utilization, and medicine use of young people. Young people ≥15.0 and <25.0 years captured in PaedePPOC and AdultePPOC Australian data registry were included. Data from 68 adult and 12 paediatric pain services for a 5-year period January 2018 to December 2022 (first episode, including treatment information) were analysed. Unsupervised latent class analysis was applied to explore the existence of distinct pain phenotypes, with separate models for both services. A 3-phenotype model was selected from both paediatric and adult ePPOC data, with 693 and 3518 young people included, respectively (at least one valid indicator variable). Indicator variables for paediatric models were as follows: pain severity, functional disability (quasisurrogate "pain interference"), pain count, pain duration, pain-related worry (quasisurrogate "catastrophizing"), and emotional functioning; and, for adult models: pain severity, pain interference, pain catastrophizing, emotional functioning, and pain self-efficacy. From both services, 3 similar phenotypes emerged ("low," "moderate," "high"), characterized by an increasing symptom-severity gradient in multidimensional pain-related variables, showing meaningful differences across clinical and sociodemographic factors, health service utilization, and medicines use. Derived phenotypes point to the need for novel care models that differentially respond to the needs of distinct groups of young people, providing timely, targeted, age-appropriate care. To effectively scale such care, digital technologies can be leveraged to augment phenotype-informed clinical care., (Copyright © 2024 The Author(s). Published by Wolters Kluwer Health, Inc. on behalf of the International Association for the Study of Pain.)

Chronic or persistent pain is a growing global health problem. Effective management of pain emerging in childhood may prevent long-term health and vocational consequences. Internationally, paediatric pain services are a limited resource and, as such, must strive to improve equity, outcomes, and value for money. The Paediatric electronic Persistent Pain Outcomes Collaboration (PaedePPOC) is a binational paediatric outcome measurement centre that aims to measure, benchmark, and improve children's specialist pain services in Australasia. This study documents the establishment of PaedePPOC and presents baseline and initial outcome data. Binational consensus meetings determined the measures. Governance structures, collection protocols, information technology, site-specific logistics, and onsite training were achieved within 18 months. Children and parents complete baseline and progress questionnaires. Seven of 10 Australasian services provided data to PaedePPOC, with 1432 patients enrolled until June 2018. At baseline, patients were 12.4 ± (3.0) years, 68% female, 93% Australian-born, and 5% Aboriginal and/or Torres Strait Islander people. Most had moderate-severe functional disability and impaired quality of life, with pain affecting school attendance and employment. Opioid-containing medicines were used often or daily by 16%. Patients completing outcome measures at treatment end reported clinically significant improvement in pain intensity (49% of patients), functional ability (59%), and quality of life (69%). The PaedePPOC initiative has been successfully integrated into children's pain services, yielding timely point-of-care information to support clinicians and families, and valuable binational and service data to inform quality improvement and future sector planning.