Objectives: Pediatric palliative care
promotes interdisciplinary, family-centered care when children are faced with diagnoses threatening length and/or quality of life. A significant knowledge gap remains in how to best match pediatric palliative care
resources to palliate the psychosocial impact of a PICU admission. This study was designed to identify drivers of adverse post-PICU psychosocial outcomes related to social determinants of health
to inform pediatric palliative care
services and improve post-PICU psychosocial outcomes.
technique to develop consensus regarding social determinants of health
and clinical factors affecting post-ICU psychosocial outcomes.
rounds were via an electronically mailed survey link.
First-round participants were PICU and pediatric palliative care
clinicians at the study institution. Subsequent rounds invited participants from national PICU and pediatric palliative care
professional online listserves.
Measurements and Main Results:
Consensus was defined a priori as items assigned a score greater than or equal to 4 (5-point scale) by greater than75% of respondents. One-hundred twenty-six surveys were returned and scored. Social determinants of health
risk factors included child protective services involvement (91%), caregiver with intellectual disability (87%), lack of friend or family support (82%), caregiver with behavioral health diagnosis (81%), teenage caregiver (79%), transportation challenges (79%), and language/cultural barrier (76%). Clinical risk factors included new home ventilator (94%), new tracheostomy (90%), greater than or equal to 3 hospitalizations in the prior 6 months (88%), and greater than or equal to 3 hospitalizations in the prior 12 months (82%). Social determinants of health
protective factors included extended family support (91%), caregivers in a committed relationship (79%), and caregiver optimism (78%). Respondents reported that pediatric palliative care
services had the greatest impact on caregiver satisfaction with the healthcare system (90%) and increased family involvement with state social services programs (80%).
Consensus on candidate risk and protective factors for post-ICU psychosocial challenges and candidate pediatric palliative care
-sensitive variables were identified. Further research is needed to operationalize and optimize a screening tool based on these consensus items and test it prospectively.