This article highlights efforts in pediatric rheumatology related to optimizing the care provided to patients with pediatric rheumatic diseases and describes various approaches to improve health outcomes.
Recent studies report low rates of remission, frequent occurrence of comorbidities, disease damage, and decreased health-related quality of life in pediatric rheumatic diseases. The Pediatric Rheumatology Care and Outcomes Improvement Network is a quality improvement learning network that has demonstrated improvement in the process of care measures through use of a centralized patient registry, and interventions, including previsit planning, population management, shared decision making, and patient/parent engagement. A pediatric rheumatology patient-powered research network was established to enable patient and caregiver participation in setting research priorities and to facilitate data sharing to answer research questions. Quality measure development and benchmarking are proceeding in multiple pediatric rheumatic diseases.
The review summarizes the current efforts to improve care delivery and outcomes in pediatric rheumatic diseases through a learning health system approach that harnesses knowledge from the clinical encounter to serve quality improvement, research, and discovery. Incorporating standard approaches to medication treatment plans may reduce variation in care, including using the patient voice to design research studies to bring focus on more patient relevant outcomes.
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aChildren's Mercy Kansas City, Kansas City, Missouri
bPenn State Hershey Children's Hospital, Hershey, Pennsylvania
cJames M. Anderson Center for Health Systems Excellence, Cincinnati Children's Hospital Medical Center, Cincinnati
dUniversity of Cincinnati College of Medicine, Cincinnati, Ohio, USA
Correspondence to Dr Esi M. Morgan, Division of Rheumatology, Cincinnati Children's Hospital Medical Center, 3333 Burnet Avenue, MLC 4010; Cincinnati, OH 45229, USA. Tel: +1 513 636 4676; fax: +1 513 636 4116; e-mail: firstname.lastname@example.org
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