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Research Studies is a compilation of published research articles funded by AHRQ or authored by AHRQ researchers.
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1 to 3 of 3 Research Studies DisplayedMarcus KL, Kao PC, Ma C
Symptoms and suffering at end of life for children with complex chronic conditions.
The objective of this study was to evaluate symptoms and suffering at end of life for children with noncancer, noncardiac complex chronic conditions (CCCs), as well as parental distress related to their child’s suffering. Nearly one-third of bereaved parents of children with CCCs who completed the survey reported high suffering in their child's final days of life. Parental preparedness was associated with lower perceived suffering. The authors concluded that future research should target symptoms contributing to parent and child distress and assess whether enhancing parent preparedness reduces perceived child suffering.
AHRQ-funded; HS022986.
Citation: Marcus KL, Kao PC, Ma C .
Symptoms and suffering at end of life for children with complex chronic conditions.
J Pain Symptom Manage 2022 Jan; 63(1):88-97. doi: 10.1016/j.jpainsymman.2021.07.010..
Keywords: Children/Adolescents, Chronic Conditions, Palliative Care, Pain
Leyenaar JK, Bogetz JF
Child mortality in the United States: bridging palliative care and public health perspectives.
This commentary discusses the findings of the article by Trowbridge et al in this same issue of Pediatrics, which examines modes of death rather than causes of death at a freestanding children’s hospital. Five distinct categories were created: withdrawal of life-sustaining technology; non-escalation of care; failed resuscitation; code then withdrawal; death by neurological criteria. More than 60% of the deaths were infants. The authors of this commentary note that conceptualizing the findings of this study from a public health perspective raises important questions about how causes of death are associated with end-of-life care in hospitals.
AHRQ-funded; HS024133.
Citation: Leyenaar JK, Bogetz JF .
Child mortality in the United States: bridging palliative care and public health perspectives.
Pediatrics 2018 Oct;142(4). doi: 10.1542/peds.2018-1927..
Keywords: Children/Adolescents, Hospitals, Mortality, Palliative Care, Patient-Centered Outcomes Research, Public Health
DeCourcey DD, Silverman M, Oladunjoye A
Patterns of care at the end of life for children and young adults with life-threatening complex chronic conditions.
The purpose of this study, which used a cross sectional survey, was to characterize patterns of care at the end of life for children and young adults with life-threatening complex chronic conditions (LT-CCCs) and to compare them by LT-CCC type. The investigators concluded that significant differences in patterns of care at the end of life existed depending on LT-CCC type. They suggest that attention to these patterns is important to ensure equal access to palliative care and targeted improvements in end-of-life care for these populations.
AHRQ-funded; HS022986.
Citation: DeCourcey DD, Silverman M, Oladunjoye A .
Patterns of care at the end of life for children and young adults with life-threatening complex chronic conditions.
J Pediatr 2018 Feb;193:196-203.e2. doi: 10.1016/j.jpeds.2017.09.078..
Keywords: Children/Adolescents, Chronic Conditions, Palliative Care, Practice Patterns, Young Adults