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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
Czosek RJ, Anderson JB, Baskar S
Predictors and outcomes of heart block during surgical stage I palliation of patients with a single ventricle: a report from the NPC-QIC.
This study investigated patient and surgical risks of heart block and its effect on 12-month transplant-free survival in children with a single ventricle. In total, 1423 patients were identified from the National Pediatric Cardiology Improvement Collaborative with and without heart block. One-year outcomes were analyzed. A very small percentage (2%) developed heart block during their surgical admission. Associated risk factors for block included heterotaxy syndrome and atrial flutter/fibrillation. Patients with complete heart block had lower 12-month survival, which wasn’t true for patients with second degree block. At 12 months of age, 43% of patients with heart block died and were more likely to experience mortality than patients without heart block.
AHRQ-funded; HS021114.
Citation: Czosek RJ, Anderson JB, Baskar S .
Predictors and outcomes of heart block during surgical stage I palliation of patients with a single ventricle: a report from the NPC-QIC.
Heart Rhythm 2021 Nov;18(11):1876-83. doi: 10.1016/j.hrthm.2021.05.019..
Keywords: Children/Adolescents, Heart Disease and Health, Cardiovascular Conditions, Surgery, Palliative Care, Risk, Outcomes
Bogetz JF, Revette A, DeCourcey DD
Clinical care strategies that support parents of children with complex chronic conditions.
This paper examines the best clinical care strategies that support parents of children with complex chronic conditions facing inpatient and end-of-life care in the ICU. Qualitative analysis of 21 open-response items from the cross-sectional “Survey of Caring for Children with Complex Chronic Conditions” was done. Open-ended responses from 110 of 114 survey respondents who were parents of children who received care at a large academic institution and died between 2006 and 2015 were analyzed. Most of the children had congenital/chromosomal complex chronic conditions and had died an average of 3.9 years prior to their parents’ study participation. The respondents emphasized the relational aspects of clinical care including inclusivity of their expertise on their child’s needs, recognition of their unique experiences as parents, and maintenance of connection with clinicians through bereavement.
AHRQ-funded; HS022986.
Citation: Bogetz JF, Revette A, DeCourcey DD .
Clinical care strategies that support parents of children with complex chronic conditions.
Pediatr Crit Care Med 2021 Jul;22(7):595-602. doi: 10.1097/pcc.0000000000002726..
Keywords: Children/Adolescents, Chronic Conditions, Palliative Care, Inpatient Care