Trisomy 18: A survey of opinions, attitudes, and practices of neonatologists
Attitude Of Health Personnel; Health Care Surveys; Neonatologists/px [psychology]; Physician Attitude; Practice Patterns Physicians'; Trisomy 18; Trisomy/di [diagnosis]; Adult; Article; Attitude To Abortion; Caucasian; Christian; Chromosomes Human Pair 18; Clinical Practice; Correlation Analysis; Demography; Disease Management; Disease Severity; Family; Female; Fetus Malformation; Human; Humans; Intellectual Impairment; Male; Marriage; Medical Decision Making; Medical Society; Neonatologist; Newborn Care; Normal Human; Outcome Assessment (health Care); Palliative Care; Palliative Therapy; Parental Attitude; Prenatal Diagnosis; Priority Journal; Race Difference; Resuscitation; Survival Rate; Trisomy 18; United States
We conducted a survey-based study of the opinions, attitudes, and management practices of neonatologists across the United States regarding prenatally diagnosed Trisomy 18. The survey was designed based on previously validated surveys of severe fetal anomalies and collected demographic information on participants, as well as their attitudes, and management choices given a series of vignettes beginning in the prenatal period. The survey was sent to 3,143 American Academy of Pediatrics Section on Neonatal-Perinatal Medicine members of which 409 (13%) completed the survey. While the response rate was rather low, our respondent pool was representative of the national neonatologist population. Respondents were predominately white (81%), married (88%), Christian (54%), had children (86%), and were pro-choice in terms of abortion (68%). Eighty-three percent (83%) of respondents thought that trisomy 18 is a lethal condition and 60% thought that treatment is futile. Seventy-five percent (75%) expected that the best neurodevelopmental outcome in the case of infant survival would be profound intellectual disability. Regarding neonatal care, 95% stated that they would recommend palliative care only. Ninety-five percent (95%) would never recommend or recommend only if asked full code resuscitation for a neonate with full trisomy 18, yet, 44% would comply partially or in full with a full code request for resuscitation measures. The demographic features that correlated most significantly with these responses were clinician race and years in practice. The attitudes toward and management of infants affected with trisomy 18 seem to be largely driven by parental attitudes and wishes. � 2016 Wiley Periodicals, Inc.
Jacobs AP; Subramaniam A; Tang Y; Philips JB 3rd; Biggio JR; Edwards RK; Robin NH
American Journal Of Medical Genetics Part A
2016
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).
<a href="http://doi.org/10.1002/ajmg.a.37807" target="_blank" rel="noreferrer">10.1002/ajmg.a.37807</a>
Disparities in the intensity of end-of-life care for children with cancer
Childhood Cancer; Health Care Disparity; Terminal Care; Adolescent; Adult; Article; Cancer Chemotherapy; Caucasian; Child; Childhood Mortality; Cohort Analysis; Controlled Study; Demography; Female; Hematologic Malignancy; Hemodialysis; Hospital Admission; Hospital Mortality; Human; Infant; Intensive Care Unit; Intubation; Major Clinical Study; Male; Newborn; Population Research; Priority Journal; Resuscitation; Retrospective Study
BACKGROUND: Many adult patients with cancer who know they are dying choose less intense care; additionally, high-intensity care is associated with worse caregiver outcomes. Little is known about intensity of end-of-life care in children with cancer. METHODS: By using the California Office of Statewide Health Planning and Development administrative database, we performed a population-based analysis of patients with cancer aged 0 to 21 who died between 2000 and 2011. Rates of and sociodemographic and clinical factors associated with previously-defined end-of-life intensity indicators were determined. The intensity indicators included an intense medical intervention (cardiopulmonary resuscitation, intubation, ICU admission, or hemodialysis) within 30 days of death, intravenous chemotherapy within 14 days of death, and hospital death. RESULTS: The 3732 patients were 34% non-Hispanic white, and 41% had hematologic malignancies. The most prevalent intensity indicators were hospital death (63%) and ICU admission (20%). Sixty-five percent had >=1 intensity indicator, 23% >=2, and 22% >=1 intense medical intervention. There was a bimodal association between age and intensity: Ages <5 years and 15 to 21 years was associated with intense care. Patients with hematologic malignancies were more likely to have high-intensity end-of-life care, as were patients from underrepresented minorities, those who lived closer to the hospital, those who received care at a nonspecialty center (neither Children's Oncology Group nor National Cancer Institute Designated Cancer Center), and those receiving care after 2008. CONCLUSIONS: Nearly two-thirds of children who died of cancer experienced intense end-of-life care. Further research needs to determine if these rates and disparities are consistent with patient and/or family goals.
Johnston EE; Alvarez E; Saynina O; Sanders L; Bhatia S; Chamberlain LJ
Pediatrics
2017
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).
<a href="http://doi.org/10.1542/peds.2017-0671" target="_blank" rel="noreferrer">10.1542/peds.2017-0671</a>10.1542/peds.2017-0671
Access to Pediatric Palliative Care in the Neonatal Intensive Care Unit by Minorities and Rural-Dwellers in the Deep South: Patterns of Care from 2009-2017 (S816)
infant; hospice; mortality; Mississippi; Alabama; palliative therapy; major clinical study; retrospective study; Caucasian; neonatal intensive care unit; prematurity; time of death; conference abstract; medical record review; human; child; female; male; controlled study; hospitalization; resuscitation; statistics; medicaid; data analysis software; Louisiana; African American; hospitalized infant; travel
Objectives: 1. Describe patterns of pediatric palliative care and care disparities in neonatal intensive care unit (NICU) patients and families hospitalized in the Deep South (Alabama, Louisiana, and Mississippi). 2. Describe implications for practice related to current trends of pediatric palliative care use in the NICU and implications for future research. Original Research Background: Pediatric mortality is the highest in the first year of life. In 2013, 23,446 infants died in the U.S. Access to timely pediatric palliative care (PPC) services are limited for seriously ill infants and their families in the U. S. Deep South. Patterns of PPC in the neonatal intensive care unit (NICU) and the extent of PPC disparities in the Deep South are unknown. Research Objectives: Examine racial and geographical differences in pediatric palliative care (PPC) consultation for seriously ill infants in the neonatal intensive care unit.
Currie E; Wolfe J; Boss R; Ejem D; Perna S; Dionne-Odom J; Buckingham S; McKillip K; Bakitas M
Journal of Pain and Symptom Management
2019
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).
<a href="http://doi.org/10.1016/j.jpainsymman.2018.12.269" target="_blank" rel="noreferrer noopener"> 10.1016/j.jpainsymman.2018.12.269</a>
Pediatric Complex Chronic Conditions: Does the Classification System Work for Infants?
infant; complex chronic conditions; chronic disease; hospital patient; end-of-life; Caucasian; health care cost; serious illness; human; article; child; controlled study; attention; comorbidity; palliative therapy; prevalence; infants; African American; hcup kid; insurance; neonates; regression analysis
BACKGROUND:: One widely accepted approach to identify children with life-limiting health problems is the complex chronic conditions (CCCs) classification system. Although considered the "gold standard" for classifying children with serious illness, little is known about its performance, especially among infants. OBJECTIVE/HYPOTHESIS:: This research examined the prevalence of CCCs and the infant characteristics related to a CCC classification. METHOD(S):: Multivariate regression analysis was conducted with 2012 Kids' Inpatient Database, Healthcare Cost and Utilization Project data files, using a national sample of infant decedents less than 1 year. RESULT(S):: Our findings showed that 40% of the infants were classified with a CCC. African Americans were negatively associated with a CCC classification (adjusted odds ratio [aOR] = 0.63; 95% confidence interval [CI] = 0.543-0.731). When infants had other insurance coverage, they were less likely (aOR = 0.63; 95% CI = 0.537-0.748) to have a CCC classification. Infants who resided in nonurban areas (aOR = 1.21; 95% CI =1.034-1.415) and had comorbidities (aOR = 38.19; 95% CI = 33.12-44.04) had greater odds of having a CCC classification. CONCLUSION(S):: The findings suggested that the infants are not commonly classified with a CCC and highlighted the significant variation in race with African American infants exhibiting different CCC classifications than Caucasian infants. Given the importance of reducing disparities in palliative care, critical attention to using CCC classifications in research is warranted.
Lindley L C; Fortney C A
The American Journal of Hospice & Palliative Care
2019
<a href="http://doi.org/10.1177/1049909119838985" target="_blank" rel="noreferrer noopener">10.1177/1049909119838985</a>
Timing of palliative consultation for children during a fatal illness
article; cohort analysis; female; human; major clinical study; male; palliative therapy; retrospective study; outcome assessment; Caucasian; African American; cardiovascular disease; childhood disease; insurance; length of stay; private health insurance
BACKGROUND: The American Academy of Pediatrics recommends palliative care for children at the diagnosis of serious illness. Yet few children who die receive specialty palliative care consultation, and when it is provided, palliative care consultation tends to occur after .75% of the time from diagnosis until death. Focusing on the timing of palliative consultation in relation to the date of diagnosis, we evaluated factors predicting earlier receipt of pediatric palliative care in a cohort of decedents. METHOD(S): We retrospectively identified patients diagnosed with a life-limiting disease who died at our hospital in 2015-2017 after at least 1 inpatient palliative medicine consultation. Our primary outcome was time from palliative-qualifying diagnosis to earliest receipt of specialty palliative care. A survival analysis was used to describe factors associated with earlier receipt of palliative care. RESULT(S): The analysis included 180 patients (median age at diagnosis,1 month [interquartile range (IQR): 0-77]). The median time to first palliative consultation was 7 days after diagnosis (IQR: 2-63), compared with a median of 50 days between diagnosis and death (IQR: 7-210). On the multivariable analysis, palliative consultation occurred earlier for patients who had cardiovascular diagnoses, had private insurance, and were of African American race. CONCLUSION(S): In a cohort of decedents at our institution, palliative consultation occurred much earlier than has been previously reported. We also identify factors associated with delayed receipt of palliative care among children who are dying that reveal further opportunities to improve access to specialty palliative care. Copyright © 2019 by the American Academy of Pediatrics.
Rossfeld Z M; Miller R; Fosselman D D; Ketner A R; Tumin D; Tobias J D; Humphrey L
Hospital Pediatrics
2019
<a href="http://doi.org/10.1542/hpeds.2018-0169" target="_blank" rel="noreferrer noopener">10.1542/hpeds.2018-0169</a>
Implications of Pediatric Palliative Consultation for Intensive Care Unit Stay
adolescent; adult; article; child; cohort analysis; female; human; major clinical study; male; retrospective study; controlled study; childhood cancer; pediatric hospital; Caucasian; length of stay; palliative therapy; pediatric intensive care unit; child hospitalization; confidence interval; demography; health insurance; hospital admission; infant; newborn; patient referral
Background: The impact of specialty pediatric palliative care (PPC) on intensive care unit (ICU) length of stay for children is unclear. Objective: To estimate the impact of PPC consultation by analyzing ICU stay as a dynamic outcome over the course of hospitalization. Patients and Methods: Retrospective cohort study of children hospitalized with diagnoses suggested as referral triggers for PPC at a large academic children's hospital. We assessed ICU stay according to PPC consultation and, using a patient-day analysis, applied multivariable mixed effects logistic regression to predict the odds of being in the ICU on a given day. Results: The analytic sample included 777 admissions (11,954 hospital days), of which 100 admissions (13%) included PPC consultation. Principal patient demographics were age 8 ± 6 years, 55% male sex, 71% white race, and 52% commercial insurance. Cardiac diagnoses were most frequent (29%) followed by gastrointestinal (22%) and malignant (20%) conditions. Although total ICU stay was longer for admissions, including PPC consultation (compared to admissions where PPC was not consulted), the odds of being in the ICU on a given day were reduced by 79% after PPC consultation (odds ratio [OR] = 0.21; 95% confidence interval [CI]: 0.13-0.34; p < 0.001) for children with cancer and 85% (OR = 0.15; 95% CI: 0.08-0.26; p < 0.001) for children with nononcologic conditions. Conclusions: Among children hospitalized with a diagnosis deemed eligible for specialty PPC, the likelihood of being in the ICU on a given day was strongly reduced after PPC consultation, supporting the value of PPC.
Rossfeld ZM; Miller R; Tumin D; Tobias JD; Humphrey LM
Journal of Palliative Medicine
2019
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).
<a href="http://doi.org/10.1089/jpm.2018.0292" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.0292</a>
Parental knowledge and opinions on palliative care for children
ambulatory care; analysis of variance; awareness; Caucasian; child; conference abstract; controlled study; convenience sample; data analysis software; ethnic group; female; high school; human; Illinois; institutional review; legal guardian; Likert scale; major clinical study; male; New York; palliative therapy; physician; randomized controlled trial; terminal care
Purpose: A pilot study to ascertain awareness and understanding of palliative care among parents of pediatric patients at a single academic medical center.
Zawistowski C A; Black C; Spruill T M; Granowetter L
Pediatrics
2018
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).
Pediatric Resident's Knowledge and Attitudes Towards Spiritual Assessment and Care: An Educational Intervention. (FR408C)
attitude; Caucasian; child; clinical article; comfort; conference abstract; controlled study; female; human; Likert scale; palliative therapy; pediatric patient; resident; role playing; Wilcoxon signed ranks test
Objectives: * Recognize the importance of religious/spiritual assessment and care in pediatric patients with serious illness. * Identify the elements of a spiritual assessment. * Assess the needs of pediatric residents in religious and spiritual assessment in children with serious illness.
Delaney C; Moehling K; Maurer S
Journal of Pain and Symptom Management
2020
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).
<a href="http://doi.org/10.1016/j.jpainsymman.2019.12.120" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.12.120</a>
Parent-Reported Outcomes of Prognostic Communication in Hospitalized Children with Advanced Heart Disease (S762)
adult; cardiology; Caucasian; child; cohort analysis; conference abstract; controlled study; conversation; decision making; expectation; female; heart single ventricle; high school; hospitalization; hospitalized child; human; infant; intubation; length of stay; major clinical study; male; married person; medical record review; mother; prognosis; prospective study; pulmonary hypertension; pulmonary vein stenosis; recall; young adult
Objectives: * Describe a prospective study to evaluate how parents of children with advanced heart disease (AHD) perceive communication about prognosis with their child's physicians. * Describe results from this analysis that found no correlation between length of stay of a child with advanced heart disease and parent reports of conflicting information from physicians. Original Research Background and Objectives: Communication between parents and physicians is essential to high-quality care. For families of patients with AHD, understanding prognosis is critical to decision making and is associated with less perceived suffering at end of life. This is the first study to prospectively evaluate how parents of children with AHD perceive prognostic communication with their child's physicians.
Miller M K; Morell E; Feraco A; Goldberg S; Reichman J; Sahakian L; Sleeper L; Blume E
Journal of Pain and Symptom Management
2020
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).
<a href="http://doi.org/10.1016/j.jpainsymman.2019.12.323" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.12.323</a>
Timing of palliative consultation for children during a fatal illness
childhood disease; palliative therapy; African American; article; cardiovascular disease; Caucasian; Child; cohort analysis; female; human; insurance; length of stay; major clinical study; male; Only Child; outcome assessment; private health insurance; Referral and Consultation; retrospective study
Abstract Background: The American Academy of Pediatrics recommends palliative care for children at the diagnosis of serious illness. Yet few children who die receive specialty palliative care consultation, and when it is provided, palliative care consultation tends to occur after >75% of the time from diagnosis until death. Focusing on the timing of palliative consultation in relation to the date of diagnosis, we evaluated factors predicting earlier receipt of pediatric palliative care in a cohort of decedents. Methods: We retrospectively identified patients diagnosed with a life-limiting disease who died at our hospital in 2015-2017 after at least 1 inpatient palliative medicine consultation. Our primary outcome was time from palliative-qualifying diagnosis to earliest receipt of specialty palliative care. A survival analysis was used to describe factors associated with earlier receipt of palliative care. Results: The analysis included 180 patients (median age at diagnosis <1 month [interquartile range (IQR): 0-77]). The median time to first palliative consultation was 7 days after diagnosis (IQR: 2-63), compared with a median of 50 days between diagnosis and death (IQR: 7-210). On the multivariable analysis, palliative consultation occurred earlier for patients who had cardiovascular diagnoses, had private insurance, and were of African American race. Conclusions: In a cohort of decedents at our institution, palliative consultation occurred much earlier than has been previously reported. We also identify factors associated with delayed receipt of palliative care among children who are dying that reveal further opportunities to improve access to specialty palliative care.
Rossfeld ZM; Miller R; Fosselman DD; Ketner AR; Tumin D; Tobias JD; Humphrey L
Hospital Pediatrics
2019
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).
<a href="http://doi.org/10.1542/hpeds.2018-0169" target="_blank" rel="noreferrer noopener">10.1542/hpeds.2018-0169</a>