Quality of paediatric hospice care for children with and without multiple complex chronic conditions

Area of Science:

• Pediatric Palliative Care
• Health Services Research
• Chronic Illness Management

Background:

• Hospice care for children with multiple complex chronic conditions (MCCC) presents unique end-of-life (EOL) challenges.
• Limited understanding exists regarding the quality of hospice care for MCCC children versus their non-MCCC peers.

Purpose of the Study:

• To compare the quality of pediatric hospice care, encompassing structures, processes, and outcomes.
• To differentiate care experiences between children with and without MCCC.

Main Methods:

• Retrospective comparative analysis of the National Home and Hospice Care Survey data.
• Utilized a nationally representative sample of pediatric hospice patients.
• Employed Pearson chi-square and Wald tests for statistical comparisons.

Main Results:

• Children with MCCC experienced longer hospice stays (>2 months) with frequent staff visits and lower symptom burden.
• MCCC children demonstrated minimal care discontinuity at EOL.
• Children without MCCC had shorter hospice stays, fewer clinical visits, higher symptom burden, and more frequent disenrollment for aggressive treatments.

Conclusions:

• Significant disparities in pediatric hospice care quality exist between MCCC and non-MCCC children.
• Findings offer critical insights into optimizing hospice care for diverse pediatric populations.
• Understanding these differences is crucial for improving end-of-life care for all children.