Children with complex chronic conditions in inpatient hospital settings in the United States
Cohen 2006 BMC HSR Refs
2010
Simon TD; Berry J; Feudtner C; Stone BL; Sheng X; Bratton SL; Dean JM; Srivastava R
Pediatrics
2010
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1542/peds.2009-3266" target="_blank" rel="noreferrer">10.1542/peds.2009-3266</a>
Differences in characteristics of dying children who receive and do not receive palliative care
adolescent; Child; Female; Humans; infant; Male; retrospective studies; United States; Intensive Care Units; Palliative Care; Terminal Care; Cohort Studies; Hospital Mortality; cause of death; Age Factors; Length of Stay; Hospitals; Utilization Review; Neonatal; Palliative Care; Pediatric; Preschool; Newborn; location of death; Pediatric palliative care; complex chronic conditions
OBJECTIVE: Comparing demographic and clinical characteristics associated with receipt of palliative care (PC) among children who died in children's hospitals to those who did not receive PC and understanding the trends in PC use. METHODS: This retrospective cohort study used the Pediatric Health Information System database. Children <18 years of age who died ≥5 days after admission to a Pediatric Health Information System hospital between January 1, 2001, and December 31, 2011 were included. Receipt of PC services was identified by the International Classification of Diseases, Ninth Revision code for PC. Diagnoses were grouped using major diagnostic codes. International Classification of Diseases codes and clinical transaction codes were used to evaluate all interventions. RESULTS: This study evaluated 24 342 children. Overall, 4% had coding for PC services. This increased from 1% to 8% over the study years. Increasing age was associated with greater receipt of PC. Children with the PC code had fewer median days in the hospital (17 vs 21), received fewer invasive interventions, and fewer died in the ICU (60% vs 80%). Receipt of PC also varied by major diagnostic codes, with the highest proportion found among children with neurologic disease. CONCLUSIONS: Most pediatric patients who died in a hospital did not have documented receipt of PC. Children receiving PC are different from those who do not in many ways, including receipt of fewer procedures. Receipt of PC has increased over time; however, it remains low, particularly among neonates and those with circulatory diseases.
2013-07
Keele L; Keenan HT; Sheetz J; Bratton SL
Pediatrics
2013
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1542/peds.2013-0470" target="_blank" rel="noreferrer">10.1542/peds.2013-0470</a>
Pediatric organ donation and transplantation
adolescent; Child; Humans; infant; United States; Death; Adult; Tissue and Organ Procurement; Brain Death; Preschool; Organ Transplantation
BACKGROUND AND OBJECTIVES: There is increasing unmet need for solid organ donation. Alternative donor sources, such as donation after circulatory determination of death (DCDD), are needed. The objective of this study was to examine the impact of DCDD on trends in pediatric organ donation and transplantation. METHODS: Data were obtained from the Organ Procurement and Transplantation Network for US organ recipients and donors from 2001 to 2010 stratified according to age, organ, and deceased donor type (DCDD or donation after neurologic determination of death). Additional data included transplant wait-list removals due to death. RESULTS: From 2001 to 2010, pediatric organ transplant recipients increased from 1170 to 1475. Organs from DCDD donors were transplanted into children infrequently but increased from 1 to 31. Pediatric donation after neurologic determination of death decreased by 13% whereas DCDD increased by 174% (50 to 137). Recipients of pediatric grafts decreased from 3042 to 2751. Adults receiving grafts from pediatric donors decreased from 2243 to 1780; children receiving pediatric grafts increased from 799 to 971. Transplant recipients receiving pediatric DCDD grafts were few but increased annually from 50 to 128 adults and 0 to 9 children. Pediatric candidates dying waiting for an organ decreased from 262 to 110. CONCLUSIONS: From 2001 to 2010, children received more solid organ transplants and fewer children died waiting. Organ recovery from pediatric and adult DCDD donors increased. The number of pediatric recipients of DCDD grafts remains small. Adults primarily receive the direct benefit from pediatric DCDD but other changes in organ allocation have directly benefited children.
2013-06
Workman JK; Myrick CW; Meyers RL; Bratton SL; Nakagawa TA
Pediatrics
2013
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1542/peds.2012-3992" target="_blank" rel="noreferrer">10.1542/peds.2012-3992</a>
Parental Experiences and Recommendations in Donation After Circulatory Determination of Death
OBJECTIVE:: To describe parents' experience of organ donation decision making in the case of donation after circulatory determination of death. DESIGN:: Qualitative exploratory analysis. SETTING:: Participants were recruited from the ICU of a single children's hospital located in the western United States. PARTICIPANTS:: Thirteen parents, 11 families who consented to donate their child's organs. INTERVENTIONS:: Interviews (average 82 min). MEASUREMENTS AND MAIN RESULTS:: Transcribed interviews were analyzed using the constant comparative method to identify themes that reflected similarities in parents' experiences. The themes we found included 1) factors contributing to parental decision making, 2) under the circumstances of the child dying, and 3) donation decision and its impact on parental grief. Factors that influenced the decision making all related to the child dying, including protecting the child's body and helping the child to die peacefully. Finally, parents made recommendations about the organ donation process, including empathy, attend to end-of-life concerns, and the provision of relevant information for donation decisions. CONCLUSIONS:: Parents' decision making was related directly to end-of-life experience and grief process. Providers need to orient to parents' end-of-life concerns to support parents' decision-making process and improve donation after circulatory determination of death procedures.
2013-12
Hoover SM; Bratton SL; Roach E; Olson LM
Pediatric Critical Care Medicine
2013
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1097/PCC.0000000000000035" target="_blank" rel="noreferrer">10.1097/PCC.0000000000000035</a>