Development of the Pediatric Palliative Care Quality Network

Dear Editor:

Demonstrating health care quality has never been more important and palliative care programs have an opportunity to be at the forefront of these initiatives as evidence increasingly suggests that palliative care improves the quality of care for patients and can be cost saving. ¹ Despite this evidence, development of a meaningful and manageable pediatric palliative care (PPC) quality reporting system has been a challenge. ² To date, there is limited evidence about pediatric-specific quality standards and little ability to benchmark across PPC programs. ² Furthermore, the majority of PPC programs are small, leaving minimal bandwidth for activities beyond the everyday work of caring for patients. ²

We think these challenges make leveraging the extensive experience of adult quality improvement systems for pediatrics a necessity. At the University of California, San Francisco (UCSF), we developed the Pediatric Palliative Care Quality Network (PedPCQN) that is, to our knowledge, the first nationally available PedPCQN in the United States that measures structures and processes of care as well as patient-level outcomes for children receiving inpatient PPC services.

PedPCQN builds from the Palliative Care Quality Network (PCQN), which is a national palliative care quality improvement network that collects standardized data with user-friendly data analytics and serves as a quality improvement collaborative. ³ The robust development process of PCQN has been previously described. ³ For PedPCQN, metrics specific to PPC were modified (e.g., age in days/months and referral location in pediatric-specific locations). Data elements regarding primary diagnoses were updated to include relevant pediatric conditions—specifically for children with neurological conditions and chromosomal/genetic disorders. ⁴ Important pediatric symptoms were also added, including agitation/irritability, feeding problems, voiding problems, and stooling problems. ⁴ To characterize these symptoms, specific assessment tools were not added, but instead, ratings were kept consistent with other PCQN symptoms (i.e., “none, mild, moderate, severe, seen but patient not able to rate, or seen but not assessed”). Parent and caregiver responses were included for young children and any older children unable to respond for themselves. Table 1 lists the PedPCQN data elements.

The development of PedPCQN provides a tremendous opportunity for PPC programs nationally to collect, report, and benchmark their quality data. To date, the PedPCQN database includes data on >800 consultations from six PPC programs. At UCSF, PedPCQN has enabled our medium-sized team to routinely collect and monitor quality data, obtain Joint Commission Advanced Certification in palliative care, and join in broader quality improvement initiatives not only across our health system but also nationally as part of the Pediatric Palliative Improvement Network. We have achieved these goals by streamlining data collection through the use of electronic note templates that incorporate PedPCQN data elements and by regular program quality improvement team meetings where we review data and discuss processes for improvement. Although PedPCQN will need further refinement, it is a first attempt at creating a national PedPCQN that includes patient-level data. As more programs join, PedPCQN will become even more effective at expanding the mission of improving patient care, research, and program development through quality initiatives in PPC.