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The Paediatric electronic Persistent Pain Outcomes Collaboration (PaedePPOC): establishment of a binational system
Susan M Lord1,2,3, Hilarie P Tardif4, Elizabeth A Kepreotes1,3,5,6
1Children's Complex Pain Service, John Hunter Children's Hospital, Newcastle, Australia.
Insights
The Paediatric electronic Persistent Pain Outcomes Collaboration (PaedePPOC) successfully established a system to measure and improve children's pain services. This initiative showed significant improvements in pain intensity, function, and quality of life for young patients.
Area of Science:
- Pediatric Health
- Pain Management
- Health Services Research
Background:
- Chronic pain in children presents significant long-term health and vocational challenges.
- Paediatric pain services are limited resources requiring enhanced equity, outcomes, and efficiency.
- The Paediatric electronic Persistent Pain Outcomes Collaboration (PaedePPOC) was developed to address these issues in Australasia.
Purpose of the Study:
- To document the establishment of the PaedePPOC, a binational outcome measurement centre.
- To present baseline demographic and clinical data of children with persistent pain.
- To report initial outcome data following the implementation of the PaedePPOC.
Main Methods:
- Binational consensus meetings defined outcome measures.
- Established governance, data collection protocols, IT infrastructure, and training within 18 months.
- Collected baseline and progress data from children and parents via questionnaires.
Main Results:
- Seven of 10 Australasian services contributed data, enrolling 1432 patients by June 2018.
- Baseline characteristics included a mean age of 12.4 years, 68% female, and significant functional disability and reduced quality of life.
- 16% of patients used opioid-containing medicines regularly; at treatment end, significant improvements were reported in pain intensity (49%), function (59%), and quality of life (69%).
Conclusions:
- The PaedePPOC initiative has been successfully integrated into children's specialist pain services.
- The centre provides timely point-of-care data for clinicians and families.
- PaedePPOC generates valuable binational data for quality improvement and future health service planning.
Abstract:
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.