Improving care delivery and outcomes in pediatric rheumatic diseases

Abstract

Purpose of review-To highlight efforts in pediatric rheumatology related to optimizing the care provided to patients with pediatric rheumatic diseases and describe various approaches to improve health outcomes.Recent findings-Recent studies report low rates of remission, frequent occurrence of comorbidities, disease damage, and decreased health-related quality of life in pediatric rheumatic diseases. Pediatric Rheumatology Care and Outcomes Improvement Network is a quality improvement learning network that has demonstrated improvement in process of care measures through use of a centralized patient registry, and interventions including pre-visit 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 is proceeding in multiple pediatric rheumatic diseases.Summary-This 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 the patient voice to design of research studies brings focus on more patient relevant outcomes. (See Video, Supplemental Digital Content 1).

Pain, functional disability, and their Association in Juvenile Fibromyalgia Compared to other pediatric rheumatic diseases

“…Pain and optimal approaches to minimize its impact also have been rarely studied in several of the pediatric rheumatic diseases. However, more routine incorporation of pain and other patientreported outcomes into patient registries in part is helping to address this [29][30][31]. Our findings emphasize that pain across conditions commonly managed in pediatric rheumatology would benefit from continued increased prioritization in assessment, treatment and research.…”

A Canadian evaluation framework for quality improvement in childhood arthritis: key performance indicators of the process of care

“…Only KPIs with median scores of ≥ 7 on all 3 questions with no disagreement were included in the final set. Ratings 4-6 were categorized as "uncertain" care and patient outcomes and includes 20 centers in the USA and Canada [30]. Beyond measurement of processes and outcomes, PR-COIN uses a number of strategies to improve care including pre-visit planning, strategies and toolkits for self-management, and patient/ parent engagement [30].…”

“…Ratings 4-6 were categorized as "uncertain" care and patient outcomes and includes 20 centers in the USA and Canada [30]. Beyond measurement of processes and outcomes, PR-COIN uses a number of strategies to improve care including pre-visit planning, strategies and toolkits for self-management, and patient/ parent engagement [30]. PR-COIN's quality measurement framework includes several process and outcome measures adapted from a set of 12 measures assessing processes of arthritis care that were also considered in the present study [20].…”

The European network for care of children with paediatric rheumatic diseases: care across borders

“…The use of various disease outcome parameters was reported by 37-66% of centres. Standardised assessment of outcomes is considered one of the main quality improvement methods and has been incorporated among overarching recommendations for the management of PRD (12,17). Disease and treatment registries also belong to clinical research as well as care improvement instruments (18).…”