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Complex chronic conditions in Rhode Island's pediatric populace: implications for palliative and hospice services,
Daniel S Jamorabo1, Chandra P Belani, Edward W Martin
11 Department of Medicine, University of Massachusetts Medical School , Worcester, Massachusetts.
Insights
Complex chronic conditions (CCCs) significantly contribute to pediatric deaths in Rhode Island, often involving secondary illnesses and occurring at home. Pediatric palliative and hospice care (PP/HC) is vital for supporting these children and their families.
Area of Science:
- Pediatric Medicine
- Public Health
- Palliative Care
Background:
- Pediatric patients with complex chronic conditions (CCC) can benefit from pediatric palliative and hospice care (PP/HC).
- Data on hospitalization patterns and secondary illnesses in pediatric CCC patients is limited.
- Understanding mortality trends in pediatric CCC is crucial for improving care.
Purpose of the Study:
- To describe mortality trends for Rhode Island children aged 0-17 years.
- To analyze demographics, subtypes, sites of death, and comorbidities of pediatric CCC patients.
- To identify patterns in medically related deaths among children with CCC.
Main Methods:
- Retrospective cohort study utilizing death certificate data.
- Analysis of demographic, hospitalization, and clinical data from the Rhode Island Department of Health (2000-2012).
- Examination of 1422 pediatric deaths to identify CCC-related mortality.
Main Results:
- CCCs accounted for 27% of medically related pediatric deaths and 62% of post-infancy deaths.
- CCC deaths were more likely to occur at home and have documented secondary causes.
- Infants with CCCs were more likely to die in-hospital, while older children (1-17) were more likely to die at home or in the ED.
Conclusions:
- CCCs represent a substantial portion of medically related pediatric deaths in Rhode Island.
- CCCs are associated with secondary comorbidities and a higher likelihood of death at home.
- Specialized, multidisciplinary services, including PP/HC, are essential for supporting pediatric CCC patients and their families.
Background:
Pediatric patients with complex chronic conditions (CCC) can benefit from pediatric palliative and hospice care (PP/HC) services. PP/HC can be delivered in a variety of health care settings and for a multitude of conditions, but data on hospitalization patterns and on secondary illnesses in pediatric CCC patients remains scant.
Objective:
The study objective was to describe mortality trends for Rhode Island resident children aged 0-17 years, along with the demographics, subtypes, sites of death, and comorbidities of those with CCC.
Methods:
This was a retrospective cohort study using demographic, hospitalization, and clinical data from all Rhode Island Department of Health death certificates from 2000 to 2012.
Results:
Among the 1422 Rhode Island children aged 0-17 years old who died from 2000 to 2012, CCCs accounted for 27% (279/1049) of medically related deaths and 62% (145/233) of such deaths after infancy. CCC deaths were more likely at home (OR 5.202, 95% CI 2.984-9.203, p<0.001) and to have had a secondary cause of death documented (OR 3.032, 95% CI 2.259-4.067, p<0.001) than were other medically related deaths. Infants with CCCs were more likely to die in an inpatient setting (OR 5.141, 95% CI 2.718-10.026, p<0.001), whereas 1-17 year-olds with CCCs were more likely to die at home (OR 5.346, 95% CI 2.200-14.811, p<0.001) or in an emergency department (OR 3.281, 95% CI 1.363-8.721, p<0.040).
Conclusions:
CCCs constitute a significant proportion of medically related pediatric deaths in Rhode Island and are associated with both secondary comorbidities and death at home. Specialized, multidisciplinary services are warranted and PP/HC is crucial for patient and family support.
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