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The Pediatric Palliative Care Quality Network: Palliative Care Consultation and Patient Outcomes
Andrea C Postier1,2, Maggie C Root3, David L O'Riordan4
1Division of Pediatric Pain, Palliative and Integrative Medicine, Department of Pediatrics, University of California San Francisco School of Medicine, San Francisco, California.
Insights
Pediatric palliative care (PPC) referrals occur early for symptom management, with improvements noted. Ensuring adequate interdisciplinary PPC team staffing is crucial for seriously ill children.
Area of Science:
- Pediatric Palliative Care
- Quality Improvement in Healthcare
- Interdisciplinary Care Models
Background:
- Quality benchmarking in pediatric palliative care (PPC) is essential for identifying care gaps and driving quality improvement initiatives.
- This study aimed to characterize inpatient PPC referral processes, interdisciplinary care delivery, and patient outcomes using a multisite data repository.
Purpose of the Study:
- To analyze inpatient pediatric palliative care referral patterns.
- To examine the delivery of interdisciplinary PPC services.
- To evaluate patient outcomes associated with PPC interventions.
Main Methods:
- A cross-sectional analysis of administrative data from 1587 inpatient PPC encounters across 5 US hospitals (2016-2022).
- Data were collected from a national repository by PPC clinicians, focusing on key quality indicators.
- Descriptive analysis examined program characteristics, referral patterns, care processes, and outcomes, comparing length of stay by discharge disposition.
Main Results:
- PPC programs had a median service duration of 13 years, primarily serving children over 1 year old with solid tumors or congenital conditions.
- Referrals were often driven by psychosocial support needs (78%) and goals of care discussions (42%).
- Significant symptom improvement was observed, with moderate-severe pain, dyspnea, fatigue, and feeding issues improving by the second assessment.
Conclusions:
- Early referrals for psychosocial and symptom management in PPC are common and effective.
- Improvement in symptom distress scores was frequently observed after initial PPC assessment.
- Adequate interdisciplinary PPC team staffing is vital to address the complex needs of critically ill children.
Background And Objectives:
Quality benchmarking in pediatric palliative care (PPC) helps identify gaps in care and guides quality improvement. Our study objective was to characterize inpatient PPC referral processes, interdisciplinary PPC delivery, and patient outcomes from a multisite PPC data repository.
Methods:
Cross-sectional, administrative data analysis of 1587 PPC inpatient encounters at 5 US hospitals enrolled in the Pediatric Palliative Care Quality Network (2016-2022). PPC clinicians submitted data to a national repository for key quality indicators. Program and referral characteristics, care processes, and outcomes were examined descriptively. Time to referral, time on PPC service, and total hospital length of stay were compared by discharge disposition (alive or dead).
Results:
Programs were in service for 13 (range 6-17) years on average. Most encounters involved children >1 year old (77%). Common diagnoses were solid tumor cancer (29%) and congenital or chromosomal conditions (14%). Care was often provided by ≤2 PPC team members (53%) until discharge (median = 7d, interquartile range 2-23). There were often multiple reasons for PPC referral, including psychosocial support (78%), goals of care discussions/advance care planning (42%), management of non-pain symptoms (34%), and pain (21%). Moderate-severe symptoms improved by second assessment for pain (71%), dyspnea (51%), fatigue (46%), and feeding issues (39%).
Conclusions:
Referrals to PPC were made early during hospitalization for psychosocial and physical symptom management. Moderate-severe symptom distress scores at initial assessment often improved. Findings highlight the need to ensure interdisciplinary PPC team staffing to meet the complex care needs of seriously ill children.
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