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AHRQ Research Studies
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Research Studies is a compilation of published research articles funded by AHRQ or authored by AHRQ researchers.
Results
1 to 10 of 10 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
Bogetz JF, Revette A, Rosenberg AR
"I could never prepare for something like the death of my own child": parental perspectives on preparedness at end of life for children with complex chronic conditions.
This study’s goal was to elucidate aspects important to preparedness at end of life (EOL) among bereaved parents of children with complex chronic conditions (CCCs). Participants answered 21 open-response queries on communication, decision-making, and EOL experiences as part of the Survey of Caring for Children with CCCs. Findings showed that most bereaved parents of children with CCCs described feeling unprepared for their child's EOL, despite palliative care and advance care planning, suggesting preparedness is a nuanced concept beyond "readiness." Recommendations included more research to identify supportive elements among parents facing their child's EOL.
AHRQ-funded; HS022986.
Citation: Bogetz JF, Revette A, Rosenberg AR .
"I could never prepare for something like the death of my own child": parental perspectives on preparedness at end of life for children with complex chronic conditions.
J Pain Symptom Manage 2020 Dec;60(6):1154-62.e1. doi: 10.1016/j.jpainsymman.2020.06.035..
Keywords: Children/Adolescents, Caregiving, Mortality, Chronic Conditions, Palliative Care
Anderson JB, Brown DW, Lihn S
Power of a learning network in congenital heart disease.
This paper discusses the efforts of the National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC). The collaborative formed to improve outcomes in infants with hypoplastic left heart syndrome. It sought to (1) decrease mortality, (2) reduce growth failure, and (3) reduce hospital readmissions due to major medical problems during the interstage period between discharge following stage 1 palliation (S1P) and admission for stage 2 palliation (S2P).
AHRQ-funded; HS016957.
Citation: Anderson JB, Brown DW, Lihn S .
Power of a learning network in congenital heart disease.
World J Pediatr Congenit Heart Surg 2019 Jan;10(1):66-71. doi: 10.1177/2150135118815023..
Keywords: Cardiovascular Conditions, Children/Adolescents, Education: Continuing Medical Education, Palliative Care, Quality Improvement, Registries
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
Thienprayoon R, Marks E, Funes M
Perceptions of the pediatric hospice experience among English- and Spanish-speaking families.
The objective of this study was to explore parental perspectives of the hospice experience in children with cancer, and to explore how race/ethnicity impacts this experience. Both English and Spanish speakers described the importance of honest, direct communication by medical providers, and anxieties surrounding the expectation of the moment of death. English-speaking families were more likely to return to the hospital because of unsatisfactory symptom management.
AHRQ-funded; HS022418.
Citation: Thienprayoon R, Marks E, Funes M .
Perceptions of the pediatric hospice experience among English- and Spanish-speaking families.
J Palliat Med 2016 Jan;19(1):30-41. doi: 10.1089/jpm.2015.0137.
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Keywords: Children/Adolescents, Palliative Care, Long-Term Care, Racial and Ethnic Minorities, Cancer
Ananth P, Melvin P, Feudtner C
Hospital use in the last year of life for children with life-threatening complex chronic conditions.
The researchers assessed hospital resource use in children by type and number of life-threatening complex chronic conditions (LT-CCCs). They found that hospital use for children with LT-CCCs in the last year of life varies significantly across the type and number of conditions. Children with hematologic/ immunologic or multiple conditions have the greatest hospital use.
AHRQ-funded; HS023092.
Citation: Ananth P, Melvin P, Feudtner C .
Hospital use in the last year of life for children with life-threatening complex chronic conditions.
Pediatrics 2015 Nov;136(5):938-46. doi: 10.1542/peds.2015-0260..
Keywords: Chronic Conditions, Children/Adolescents, Hospitalization, Palliative Care
Ragsdale L, Zhong W, Morrison W
Pediatric exposure to opioid and sedation medications during terminal hospitalizations in the United States, 2007-2011.
The researchers conducted a retrospective study in which they examined the prescribing patterns of opioid and sedation medications among 37,459 children who died in 430 hospitals in the US 2007-2011. Their study reveals an overall high prevalence of exposure to opioid and sedation medications among pediatric terminal hospitalizations, yet with slightly less than one-half of patients receiving both opioids and sedatives daily near the end of life.
AHRQ-funded; HS018425.
Citation: Ragsdale L, Zhong W, Morrison W .
Pediatric exposure to opioid and sedation medications during terminal hospitalizations in the United States, 2007-2011.
J Pediatr 2015 Mar;166(3):587-93.e1. doi: 10.1016/j.jpeds.2014.10.017..
Keywords: Children/Adolescents, Hospitalization, Medication, Opioids, Pain, Palliative Care