Steven Smith
The purpose of this study is to test the hypothesis that the addition of home-based hospice and palliative care (HBHPC) will provide a reduction in health care utilization, improve quality of life, and facilitate goal-concordant care that is superior to inpatient and clinic pediatric palliative care (PPC) alone.
Identify difference in outcomes between those that receive home-based hospice and palliative care (HBHPC) in conjunction with inpatient and clinic based palliative care compared to those who receive only inpatient and clinic based palliative care. Outcomes analyzed will include hospital utilization including ICU days, inpatient hospital days, ED visits, quality of life as defined by the individual and/or primary caregivers through PEDSQL2 Family Impact Module survey, and delivery of goal concordant care by individual and family. This is a prospective, multi-site, quasi-experimental design usi…
Inclusion Criteria: * Patients aged 0-19 * Patients seen as new referral or follow up visit by PPC (Pediatric Palliative Care) team in either the inpatient or clinic context and expected to require at least twice-annual palliative care visits Exclusion Criteria: * Followed by PPC regardless of context for \>6 months prior to enrollment * Patient no longer clinically needs long term PPC follow up * Child / young adult is in custody of state or county
Participants will complete study surveys as their participation in the research study. Study staff will collect clinical and demographic information from the electronic medical records. The enrollment in this intervention will not be decided by research enrollment, but would naturally occur regardless of enrollment in the study.
Arctuva estimate
Actual pay is set by the research site.
Verify or correct the compensation shown for this listing.