LAUSR

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. Design: Modified Delphi technique to develop consensus regarding social determinants of health and clinical factors affecting post-ICU psychosocial outcomes. Setting: All Delphi rounds were via an electronically mailed survey link. Subjects: 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. Interventions: None. 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%). Conclusions: 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.