Children with intellectual disability and hospice utilization

Area of Science:

• Pediatric Palliative Care
• Intellectual Disability Research
• Health Services Research

Background:

• Over 42,000 children die annually in the US, with reduced survival for those with intellectual disability (ID), motor dysfunction, congenital conditions, and comorbidities.
• Limited understanding exists regarding hospice care utilization among children with intellectual disability.

Purpose of the Study:

• To investigate the association between intellectual disability and hospice utilization in children.
• To examine how motor dysfunction, progressive congenital conditions, and comorbidities modify the relationship between intellectual disability and pediatric hospice use.

Main Methods:

• Retrospective cohort design utilizing California Medicaid claims data from 2009-2010.
• Multivariate analysis to assess hospice enrollment and length of stay in relation to intellectual disability and other clinical factors.

Main Results:

• Intellectual disability showed a negative correlation with hospice enrollment and length of stay.
• A positive association was observed between having both intellectual disability and comorbidities and hospice enrollment.

Conclusions:

• Findings suggest disparities in hospice access for children with ID.
• Clinical implications for hospice and palliative care nurses to improve care for children with ID and their families at end-of-life are highlighted.