Evaluation of paediatric palliative care ambulance plans: A retrospective study
ambulance; palliative therapy; article; Australia; child; data completeness; drug therapy; drug use; human; male; New South Wales; Palliative Care; paramedical personnel; Retrospective Studies; retrospective study; scope of practice; special situation for pharmacovigilance; terminal care
Paediatric Palliative Care Ambulance Plans ('Plans') are used by New South Wales Ambulance (Australia) to support the care needs of children with life-limiting conditions. We aimed to describe the population of children with Plans and provide details regarding Plan completion, paramedic responses during ambulance callouts, and correspondence between Plan recommendations and paramedic responses. Plans lodged in January 2017-December 2019 were retrospectively coded for demographic information, completeness and care preferences. Associated paramedic callout notes (January 2018-December 2019) were coded for paramedic responses. Of 141 Plans retrieved, 38 (41.3% of those providing suggested medications) suggested medication use outside general paramedic scope of practice. Of 199 associated ambulance callouts, reasons for callout included symptom management, planned transfer, death notification and end-of-life care. Over two-thirds of callouts (n = 135, 67.8%) occurred after-hours. Most paramedic callouts (n = 124, 62.3%), excluding planned transfers, resulted in children being transported. Paramedic interventions corresponded with interventions suggested in Plans. However, only 24 (25.3%) of paramedic callout notes documented Plans being sighted. This study provided detailed information about children with palliative care needs for whom Plans were being used, the nature of these Plans and associated paramedic callouts. However, it is not known how paramedics were influenced by Plans.
Wan J; Vaughan A; Shepherd E; Coombs S; Trethewie S; Jaaniste T
Journal of Child Health Care
2024
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/10.1177/13674935231225714" target="_blank" rel="noreferrer noopener">10.1177/13674935231225714</a>
Differences in palliative opportunities across diagnosis groups in children with cancer.
Humans; Infant Newborn; Child; Child Preschool; Palliative Care; Retrospective Studies; Adolescent; Infant; Quality of Life; Recurrence; Only Child; Terminal Care/psychology; Neoplasms/therapy; Leukemia; Clinical Trials Phase I as Topic; Lymphoma
BACKGROUND: Childhood cancer causes significant physical and emotional stress. Patients and families benefit from palliative care (PC) to reduce symptom burden, improve quality of life, and enhance family-centered care. We evaluated palliative opportunities across leukemia/lymphoma (LL), solid tumors (ST), and central nervous system (CNS) tumor groups. PROCEDURE: A priori, nine palliative opportunities were defined: disease progression/relapse, hematopoietic stem cell transplant, phase 1 trial enrollment, admission for severe symptoms, social concerns or end-of-life (EOL) care, intensive care admission, do-not-resuscitate (DNR) status, and hospice enrollment. A single-center retrospective review was completed on 0-18-year olds with cancer who died from January 1, 2012 to November 30, 2017. Demographic, disease, and treatment data were collected. Descriptive statistics were performed. Opportunities were evaluated from diagnosis to death and across disease groups. RESULTS: Included patients (n = 296) had LL (n = 87), ST (n = 114), or CNS tumors (n = 95). Palliative opportunities were more frequent in patients with ST (median 8) and CNS tumors (median 7) versus LL (median 5, p = .0005). While patients with ST had more progression/relapse opportunities (p < .0001), patients with CNS tumors had more EOL opportunities (p < .0001), earlier PC consultation, DNR status, and hospice enrollment. Palliative opportunities increased toward the EOL in all diseases (p < .0001). PC was consulted in 108 (36%) patients: LL (48%), ST (30%), and CNS (34%, p = .02). CONCLUSIONS: All children with cancer incur many events warranting PC support. Patients with ST and CNS tumors had more palliative opportunities than LL, yet received less subspecialty PC. Understanding palliative opportunities within each disease group can guide PC utilization to ease patient and family stress.
Ebelhar J; DeGroote NP; Massie AM; Labudde E; Allen KE; Castellino SM; Wasilewski-Masker K; Brock KE
Pediatric Blood and Cancer
2023
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/pbc.30081" target="_blank" rel="noreferrer noopener">10.1002/pbc.30081</a>
Location of death among children with life-threatening conditions: a national population-based observational study using the Canadian Vital Statistics Database (2008-2014)
Humans; Child; Retrospective Studies; Infant Newborn; Hospital Mortality; Ontario; Palliative Care; Hospitalization; Only Child
BACKGROUND: Patterns in location of death among children with life-threatening conditions (e.g., cancer, genetic disorders, neurologic conditions) may reveal important inequities in access to hospital and community support services. We aimed to identify demographic, socioeconomic and geographic factors associated with variations in location of death for children across Canada with life-threatening conditions. METHODS: We used a retrospective observational cohort design and the Canadian Vital Statistics Database to identify children aged 19 years or younger who died from a life-threatening condition between Jan. 1, 2008, and Dec. 31, 2014. We used multivariable logistic regression to determine predictors of in-hospital death for children aged 1 month to 19 years, and for neonates younger than 1 month. RESULTS: Overall, 13 115 decedents younger than 19 years had life-threatening conditions. Of 5250 children and 7865 neonates, 74.2% and 98.1%, respectively, died in hospital. Among children, we found a higher proportion of hospital deaths in the lowest (v. highest) income quintile (odds ratio [OR] 1.59, 95% confidence interval [CI] 1.28-1.97), and a lower proportion among children living more than 400 km (v. < 50 km) from a pediatric hospital (OR 0.73, 95% CI 0.65-0.86). Compared with Ontario, hospital death was most common in Quebec (OR 1.38, 95% CI 1.14-1.67) and least common in British Columbia (OR 0.43, 95% CI 0.34-0.53). Compared with an oncologic cause of death, all causes except neurologic and metabolic conditions had significantly higher odds of dying in hospital. INTERPRETATION: In addition to demographics, we identified socioeconomic and geographic differences in location of death, suggesting potential inequities in access to high-quality care at the end of life. Health care policies and practices must ensure equitable access to services for children across Canada, particularly at the end of their life.
Widger K; Brennenstuhl S; Tanuseputro P; Nelson KE; Rapoport A; Seow H; Siden H; Vadeboncoeur C; Gupta S
CMAJ Open
2023
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<a href="https://www.cmajopen.ca/content/11/2/E298">10.9778/cmajo.20220070</a>
Characteristics of Critically Ill Infants at the End of Life in the Neonatal Intensive Care Unit
Critical Illness; Intensive Care Units Neonatal; Aged; Child; Critical Illness; Death; Female; Humans; Infant; Infant Newborn; Intensive Care Units; Intensive Care Units Neonatal; Male; Palliative Care; Retrospective Studies
Objectives: About 16,000 infants die in the neonatal intensive care unit (NICU) each year with many experiencing invasive medical treatments and high number of symptoms.1 To inform better management, we characterized diagnoses, symptoms, and patterns of care among infants who died in the NICU. Method: Retrospective electronic medical record (EMR) review of 476 infants who died following admission to a large regional level IV NICU in the United States over a 10-year period. Demographic, symptom, diagnosis, treatment, and end-of-life characteristics were extracted. Results: About half of infants were male (55.9%, n = 266), average gestational age was 31.3 weeks (standard deviation [SD] = 6.5), and average age at death was 40.1 days (SD = 84.5; median = 12; range: 0-835). Race was documented for 65% of infants, and most were White (67.0%). One-third of infants (n = 138) were seen by fetal medicine. Most infants experienced pain through both the month and week before death (79.6%), however, infants with necrotizing enterocolitis had more symptoms in the week before death. Based on EMR, infants had more symptoms, and received more medical interventions and comfort measures during the week before death compared with the month prior. Only 35% (n = 166) received a palliative care referral. Conclusions: Although the medical profiles of infants who die in the NICU are complex, the overall number of symptoms was less than in older pediatric populations. For infants at high risk of mortality rate, providers should assess for common symptoms over time. To manage symptoms as effectively as possible, both timely and continuous communication with parents and early referral to palliative care are recommended.
Fortney CA; Baughcum AE; Garcia D; Winning AM; Humphrey L; Cistone N; Moscato EL; Keim MC; Nelin LD; Gerhardt CA
Journal of Palliative Medicine
2023
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<a href="http://doi.org/10.1089/jpm.2022.0408" target="_blank" rel="noreferrer noopener">10.1089/jpm.2022.0408</a>
Nationwide Study of Continuous Deep Sedation Practices Among Pediatric Palliative Care Teams
Deep Sedation; Pediatrics; Terminal Care; Adolescent; Child; Female; Humans; Hypnotics and Sedatives/tu [Therapeutic Use]; Male; Palliative Care; Retrospective Studies
Abstract Context: Palliative sedation practices evolved in France when the Claeys-Leonetti law passed in 2016 authorized patient-requested continuous deep sedation (CDS) until death. Its implementation in the pediatric setting is less frequently encountered and can pose several clinical and ethical challenges for health care teams and families. Objectives: Our study aimed to describe CDS requests and practices of patients receiving specialized pediatric palliative care in France since its legalization in 2016. Methods: We conducted a nationwide multicentric, descriptive, retrospective study using a self-report questionnaire completed by all Pediatric Palliative Care (PPC) Teams that were involved in a CDS case between January 2017 and December 2019. Results: Six PPC teams had cared for six patients that had requested CDS, predominantly male adolescents/young adults diagnosed with a solid tumour. The refractory symptoms were diverse (pain, bleeding, and sensory loss) and always coupled with psycho-existential suffering. Each request was analyzed in multidisciplinary collegial meetings. Parental consent was always obtained regardless of age. Sedation typically required the use of multiple drugs including Midazolam (n = 5 cases), Chlorpromazine (n = 3), Ketamine (n = 2), and Propofol (n = 2). Despite close monitoring, achieving a satisfactory level of deep sedation was challenging and most patients unexpectedly awoke during CDS. Death occurred between 27 and 96 hours after induction. Conclusion: Managing patient-requested CDS in pediatrics is challenging due to its rarity, multi-factorial refractory symptoms and drug tolerance despite polytherapy. Few recommendations exist to guide CDS practice for pediatricians. Further studies investigating pediatric CDS practices across various cultural and legal settings, refractory symptom management and specific pharmacology are warranted.
Ridley A; Vial-Cholley E; Robert G; Jounis-Jahan F; Lervat C; Betremieux P; Viallard ML; Frache S; Cojean N
Journal of Pain and Symptom Management
2023
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<a href="http://doi.org/10.1016/j.jpainsymman.2022.12.006" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.12.006</a>
The Needs of Children Receiving End of Life Care and the Impact of a Paediatric Palliative Care Team: A Retrospective Cohort Study
Male; Female; Humans; Adolescent; Child; Child Preschool; Infant; Length of Stay; Retrospective Studies; Palliative Care; Terminal Care; Chronic Disease; Cohort Studies; Tertiary Care Centers; Paediatric palliative care; End of life; Palliative Care/methods; Health resources; Complex chronic conditions; Terminal Care/methods
Nogueira A; Correia D; Loureiro M; Gomes B; Cancelinha C
European Journal of Pediatrics
2023
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<a href="http://doi.org/10.1007/s00431-022-04683-6" target="_blank" rel="noreferrer noopener">10.1007/s00431-022-04683-6</a>
Evaluation of children with severe neurological impairment admitted to hospital with pain and irritability
Adolescent; Child; Child, Preschool; Children; Clinical pathway; Emergency Service, Hospital; Hospitalization; Hospitals, Pediatric; Humans; Infant; Infant, Newborn; Pain; Retrospective Studies; Severe neurological impairment; PIUO
BACKGROUND: Pain is the most common symptom reported by caregivers of children with severe neurological impairment (SNI), a descriptive term for children with disorders affecting the neurological system across multiple domains. In SNI, cognition, communication, and motor skills are impaired and other organ systems are impacted. Pain is difficult to identify and treat in children with SNI because of communication impairment. When a clear cause of pain is not determined, the term "Pain and Irritability of Unknown Origin (PIUO)" is used to describe pain-like behaviours. This study explores the clinical care received by children with SNI admitted to hospital after presenting to the emergency department of a tertiary pediatric hospital with pain or irritability. Findings are compared to the approach suggested in the PIUO pathway, an integrated clinical pathway for identifying and treating underlying causes of pain and irritability in children with complex conditions and limited communication. METHODS: Retrospective chart review of children (age 0 to 18 years inclusive) with diagnoses compatible with SNI presenting with pain, irritability, and/or unexplained crying that required hospitalization between January 1st, 2019 and December 31st, 2019. Descriptive statistics were used to analyze the clinical care received by children in whom a source of pain was identified or not. In children for whom no cause of pain was identified, investigations completed were compared to the PIUO pathway. RESULTS: Eight hospital admissions of six unique children were included for data analysis. A cause for pain and irritability was identified and resolved in three patients. In children with PIUO, there were gaps in history taking, physical examination, and investigations that might have allowed a cause of pain and irritability to be found. Pain was assessed using the r-FLACC pain scale and varying medications for pain/irritability were given during each hospital admission. CONCLUSION: Children with SNI admitted to a tertiary pediatric hospital did not undergo a standardized approach to identifying a cause of pain and irritability. Future efforts should explore the effectiveness of the PIUO pathway, a standardized approach to reducing and resolving pain in children with SNI.
Fishman I; Siden H; Vadeboncoeur C
BMC Pediatrics
2022
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<a href="http://doi.org/10.1186/s12887-022-03632-4" target="_blank" rel="noreferrer noopener">10.1186/s12887-022-03632-4</a>
Medicinal cannabis in children and adolescents with autism spectrum disorder: A scoping review
Adolescent; anxiety; autism spectrum disorder; Autism Spectrum Disorder; behaviour; Child; Child, Preschool; communication; Humans; hyperactivity; Infant; Infant, Newborn; Medical Marijuana; Parents; Prospective Studies; Retrospective Studies; Medicinal Cannabis
BACKGROUND: Autism spectrum disorder (ASD) is a neurodevelopmental condition estimated to affect 1 in 66 children in Canada and 1 in 270 individuals worldwide. As effective therapies for the management of ASD core and associated symptoms are limited, parents are increasingly turning to clinicians for advice regarding the use of medicinal cannabis to manage behavioural disturbances. OBJECTIVE: The objective of this scoping review was to identify and map symptoms, outcomes and adverse events related to medicinal cannabis treatment for ASD-related behaviours. METHODS: Ovid MEDLINE, Embase, CINAHL, PsycInfo, Web of Science Core Collection, Google Scholar and grey literature sources were searched up to 5 January 2020 for studies. Included studies met the following criteria: (1) investigate the use of medicinal cannabis, (2) at least 50% participants had ASD, (3) at least 50% of the study population was 0-18 years old and (4) any study design (published or unpublished). RESULTS: We identified eight completed and five ongoing studies meeting the inclusion criteria. All studies reported substantial behaviour and symptom improvement on medicinal cannabis, with 61% to 93% of subjects showing benefit. In the three studies reporting on concomitant psychotropic medication usage and with cannabis use, up to 80% of participants observed a reduction in concurrent medication use. Adverse events related to cannabis use were reported in up to 27% of participants related, and two participants had psychotic events. CONCLUSIONS: Early reports regarding medicinal cannabis in paediatric ASD symptom management are presented as positive; the evidence, however, is limited to very few retrospective cohort and observational studies. Evidence of safety and efficacy from prospective clinical trials is needed.
Fletcher S; Pawliuk C; Ip A; Huh L; Rassekh SR; Oberlander TF; Siden H
Child: Care, Health and Development
2022
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<a href="http://doi.org/10.1111/cch.12909" target="_blank" rel="noreferrer noopener">10.1111/cch.12909</a>
End-Of-Life Practices in Patients Admitted to Pediatric Intensive Care Units in Brazil: A Retrospective Study
Child; Humans; Infant; Retrospective Studies; Terminal Care; Length of Stay; Death; Death; Life Support Care; Mortality; Intensive Care Units Pediatric; Brazil/epidemiology; Child care; Intensive care units pediatric; Palliative care; Terminal care
OBJECTIVE: To determine the prevalence of life support limitation (LSL) in patients who died after at least 24h of a pediatric intensive care unit (PICU) stay, parent participation and to describe how this type of care is delivered. METHODS: Retrospective cohort study in a tertiary PICU at a university hospital in Brazil. All patients aged 1 month to 18 years who died were eligible for inclusion. The exclusion criteria were those brain death and death within 24h of admission. RESULTS: 53 patients were included in the study. The prevalence of a LSL report was 45.3%. Out of 24 patients with a report of LSL on their medical records only 1 did not have a do-not-resuscitate order. Half of the patients with a report of LSL had life support withdrawn. The length of their PICU stay, age, presence of parents at the time of death, and severity on admission, calculated by the Pediatric Index of Mortality 2, were higher in patients with a report of LSL. Compared with other historical cohorts, there was a clear increase in the prevalence of LSL and, most importantly, a change in how limitations are carried out, with a high prevalence of parental participation and an increase in withdrawal of life support. CONCLUSIONS: LSLs were associated with older and more severely ill patients, with a high prevalence of family participation in this process. The historical comparison showed an increase in LSL and in the withdrawal of life support.
Furtado RA; Tonial CT; Costa CAD; Andrades GRH; Crestani F; Bruno F; Fiori HH; Piva JP; Garcia PCR
The Journal of Pediatrics
2021
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<a href="http://doi.org/10.1016/j.jped.2020.10.017" target="_blank" rel="noreferrer noopener">10.1016/j.jped.2020.10.017</a>
Racial and Ethnic Disparities in Medical Complexity and In-Hospital Death Among US-Born VLBW Infants
Humans; Infant; Retrospective Studies; Cross-Sectional Studies; Hospital Mortality; Birth Weight; Ethnicity
BACKGROUND AND OBJECTIVE: To assess the racial and ethnic disparity in the prevalence of complex chronic conditions (CCC) and/or in-hospital death among US-born very low birth weight (VLBW, <1500 g) infants. METHODS: This retrospective, cross-sectional analysis of discharge data from the Kids' Inpatient Database, included VLBW infants born in US hospitals in 2009 and 2012 (n = 554825, weighted n = 573693) exlcuding those with missing demographics. The main outcome was CCC or death. Multiple logistic regression modeling estimated the association of various characteristics with CCC or death, considering race and ethnicity. RESULTS: There was heterogeneity in the association of insurance status and hospital region and experiencing CCC or death when compared across races and ethnicities. Infants of all races and ethnicities had higher odds of CCC or death if they had an operative procedure, were outborn, or had a birth weight of <500 g or 500 g to 999 g compared with 1000 g to 1499 g. Non-Hispanic Black infants <500 g, however, had the highest odds of CCC or death compared with those 1000 g to 1499 g (adjusted odds ratio 67.2, 95% confidence interval, 48.6-93.0), 2.3 times higher than the odds for non-Hispanic White infants (AOR 2.32, 95% confidence interval, 1.57-3.42). CONCLUSIONS: Insurance and region were associated with increased prevalence of CCC or death in certain racial and ethnic groups. Additionally, non-Hispanic Black infants <500 g had >2.3 times the odds of CCC or death compared with non-Hispanic White infants, relative to infants 1000 g to 1499 g. Additional investigation is needed to understand the drivers of these disparities.
Hannan KE; Bourque SL; Palmer C; Tong S; Hwang SS
Hospital Pediatrics
2022
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<a href="http://doi.org/10.1542/hpeds.2021-006263" target="_blank" rel="noreferrer noopener">10.1542/hpeds.2021-006263</a>
Factors associated with admission of children to an intensive care unit and readmission to hospital within 28 days of discharge: A population-based study
admission; Adolescent; Australia; Child; Hospital Mortality; Hospitals Public; Humans; intensive care; Intensive Care Units; Length of Stay; Male; paediatrics; Patient Discharge; Patient Readmission; Pediatric Intensive Care Units; population health; readmission; Retrospective Studies; Risk Factors
AIM: Hospital readmissions within 28 days are an important performance measurement of quality and safety of health care. The aims of this study were to examine the rates, trends and characteristics of paediatric intensive care unit admissions, and factors associated with readmissions to hospital within 28 days of discharge. METHODS: This retrospective, population-based record linkage study included all children ≥28 days and <16 years old admitted to an intensive care unit (ICU) in a New South Wales (NSW) public hospital from 2004 to 2013. Data were sourced from the NSW Admitted Patients Data Collection and the NSW Registry of Births, Deaths and Marriages, Death Registration. RESULTS: We identified 21 200 ICU admissions involving 17 130 children. Admissions increased by 24% over the study period with the greatest increase attributed to respiratory and musculoskeletal conditions. A higher proportion of children were <5 years, male, lived in major cities, were publicly insured and had chronic conditions. The median length of ICU stay was 42 h and overall hospital stay was 7 days. There were 905 deaths, two-thirds during the index admission with the leading causes being injuries, cancer and infections. Twenty-three per cent of ICU admissions were readmitted to hospital within 28 days of discharge. Associated independent factors were younger age, longer index hospital stay and emergency index admission. Children with chronic conditions of cancer and genitourinary disorders were more likely to be readmitted. CONCLUSIONS: Identification of complex chronic conditions, consideration of long-term health planning and interventions intended to reduce readmission is warranted in order to reduce the burden to families and the health-care system.
Bond DM; Ampt A; Festa M; Teo A; Nassar N; Schell D
Journal of Paediatrics and Child Health
2022
<a href="http://doi.org/10.1111/jpc.15766" target="_blank" rel="noreferrer noopener">10.1111/jpc.15766</a>
Low-Resource Emergency Department Visits for Children With Complex Chronic Conditions
Emergency Medical Services; Emergency Service Hospital; Child; Chronic Disease; Hospitalization; Humans; Infant; Retrospective Studies
OBJECTIVE: Reducing emergency department (ED) use in children with complex chronic conditions (CCC) is a national health system priority. Emergency department visits with minimal clinical intervention may be the most avoidable. We assessed characteristics associated with experiencing such a low-resource ED visit among children with a CCC. METHODS: A retrospective study of 271,806 ED visits between 2014 and 2017 among patients with a CCC in the Pediatric Health Information System database was performed. The main outcome was a low-resource ED visit, where no medications, laboratory, procedures, or diagnostic tests were administered and the patient was not admitted to the hospital. χ2 Tests and generalized linear models were used to assess bivariable and multivariable relationships of patients' demographic, clinical, and health service characteristics with the likelihood of a low- versus higher-resource ED visit. RESULTS: Sixteen percent (n = 44,111) of ED visits among children with CCCs were low-resource. In multivariable analysis, the highest odds of experiencing a low- versus higher-resource ED visit occurred in patients aged 0 year (vs 16+ years; odds ratio [OR], 3.9 [95% confidence interval {CI}, 3.7-4.1]), living <5 (vs 20+) miles from the ED (OR, 1.7 [95% CI, 1.7-1.8]), and who presented to the ED in the day and evening versus overnight (1.5 [95% CI, 1.4-1.5]). CONCLUSIONS: Infant age, living close to the ED, and day/evening-time visits were associated with the greatest likelihood of experiencing a low-resource ED visit in children with CCCs. Further investigation is needed to assess key drivers for ED use in these children and identify opportunities for diversion of ED care to outpatient and community settings.
Pulcini CD; Coller RJ; Macy ML; Alpern E; Harris D; Rodean J; Hall M; Chung PJ; Berry JG
Pediatric Emergency Care
2022
<a href="http://doi.org/10.1097/pec.0000000000002437" target="_blank" rel="noreferrer noopener">10.1097/pec.0000000000002437</a>
Adult healthcare is associated with more emergency healthcare for young people with life-limiting conditions
Adolescent; Adult; Children; Cohort analysis; Diabetes mellitus; Hospital care; Retrospective studies
Background: Children with life-limiting conditions receive specialist paediatric care in childhood, but the transition to adult care during adolescence. There are concerns about transition, including a lack of continuity in care and that it may lead to increases in emergency hospital visits. Method(s): A retrospective cohort was constructed from routinely collected primary and hospital care records for young people aged 12-23 years in England with (i) life-limiting conditions, (ii) diabetes or (iii) no long-term conditions. Transition point was estimated from the data and emergency inpatient admissions and Emergency Department visits per person-year compared for paediatric and adult care using random intercept Poisson regressions. Result(s): Young people with life-limiting conditions had 29% (95% CI: 14-46%) more emergency inpatient admissions and 24% (95% CI: 12-38%) more Emergency Department visits in adult care than in paediatric care. There were no significant differences associated with the transition for young people in the diabetes or no long-term conditions groups. Conclusion(s): The transition from paediatric to adult healthcare is associated with an increase in emergency hospital visits for young people with life-limiting conditions, but not for young people with diabetes or no long-term conditions. There may be scope to improve the transition for young people with life-limiting conditions. Impact: There is evidence for increases in emergency hospital visits when young people with life-limiting conditions transition to adult healthcare.These changes are not observed for comparator groups - young people with diabetes and young people with no known long-term conditions, suggesting they are not due to other transitions happening at similar ages.Greater sensitivity to changes at transition is achieved through estimation of the transition point from the data, reducing misclassification bias. Copyright © 2022, The Author(s).
Jarvis S; Flemming K; Richardson G; Fraser L
Pediatric Research
2022
<a href="http://doi.org/10.1038/s41390-022-01975-3" target="_blank" rel="noreferrer noopener">10.1038/s41390-022-01975-3</a>
Admission factors associated with nutritional status deterioration and prolonged pediatric intensive care unit stay in critically ill children: PICU-ScREEN multicenter study
Child; Child Preschool; chronic disease; Critical Illness; Humans; Infant; Intensive Care Units Pediatric; length of stay; Length of Stay; malnutrition; Malnutrition; nutritional status; Nutritional Status; outcomes; pediatric intensive care unit; Prospective Studies; Retrospective Studies
BACKGROUND: Early identification of patients in the pediatric intensive care unit (PICU) at risk of nutritional status (NS) deterioration and poor outcomes is desirable. We aimed to identify factors associated with NS deterioration and prolonged PICU stay. METHODS: Prospective cohort study in eight Brazilian PICUs with children <18 years with a PICU stay >72h. We used multivariable logistic regression to identify the clinical, laboratory, and nutrition variables at admission that were associated with outcomes. NS deterioration was defined as the reduction in weight-for-age, body mass index-for-age or mid-upper arm circumference-for-age z-score ≥1 during PICU stay. Prolonged PICU stay was defined as ≥13 days. RESULTS: We enrolled 363 eligible patients, median age 11.3 months (interquartile range:3.1-45.6) and 46% had at least one complex chronic condition (CCC). NS deterioration was observed in 23% of participants and was associated with CCC (odds ratio [OR]:2.71; 95% confidence interval [CI]:1.44-5.09), after adjusting for severity risk score, leukocyte count, obesity, and PICU site. Prolonged PICU stay was associated with age <2 years (OR:1.95; 95%CI:1.03-3.66), fluid overload (>10%) over the first 72h (OR:2.66; 95%CI:1.50-4.73), and hypoalbuminemia (<3.0 g/dL) (OR:2.05; 95%CI:1.12-3.76), after adjusting for CCC, severity risk score, undernutrition, early nutrition therapy, and PICU site. CONCLUSIONS: CCC at admission was associated with NS deterioration. Age <2 years, fluid overload, and hypoalbuminemia at PICU admission were associated with prolonged PICU stay. These factors must be further evaluated as part of an admission nutrition screening tool for critically ill children.
Ventura JC; Oliveira LDA; Silveira TT; Hauschild DB; Mehta NM; Moreno YMF; PICU-ScREEN Study Group
Journal of Parenteral and Enteral Nutrition
2022
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/jpen.2116" target="_blank" rel="noreferrer noopener">10.1002/jpen.2116</a>
Palliative sedation for children at end of life: a retrospective cohort study
Terminal Care; Child; Children; Death; End of life; Humans; Hypnotics and Sedatives/therapeutic use; Pain; Palliative care; Palliative Care; Palliative sedation; Retrospective Studies; Symptom control
BACKGROUND: Palliative sedation is consciously reducing the patient's consciousness to alleviate the refractory symptoms. However, studies on palliative sedation for children are scarce. We aimed to survey the symptom control and risks for children with sedative therapy in end of life. METHOD: This study was a single center retrospective cohort study. Children who died in the Department of Palliative Medicine were divided into palliative sedation (Group A) and non-palliative sedation group (Group B). The symptoms relief, survival time, and last hospitalization time were compared between two groups. RESULTS: From January 2012 to November 2019, 41 children died in department of palliative care. 24 children were sedated (Group A), meanwhile 17 children were not (Group B). The symptoms in Group A were more complex than Group B (p = 0.013). Overall symptom relief in Group A was higher than that in Group B (24/24, 10/15 p = 0.041). Pain relief rates (7/7, 20/21 p = 0.714), maximum/pre-death opioid dose [30(20, 77.5), 18(9, 45) p = 0.175, 30(20, 60), 18(9, 45) p = 0.208] and pain intensity difference [5(4,6.5), 4(2,6) p = 0.315] did not differ significantly in either groups. After diagnosis, the survival time of the Group A was longer than the Group B (p = 0.047). However, the length of hospitalization before death was similar in two groups (p = 0.385). CONCLUSION: Palliative sedation controls complicated, painful symptoms at the end of life and does not shorten the hospitalization time in children.
Chen Y; Jiang J; Peng W; Zhang C
BMC Palliative Care
2022
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/10.1186/s12904-022-00947-y" target="_blank" rel="noreferrer noopener">10.1186/s12904-022-00947-y</a>
Comparison between Rural and Urban Appalachian Children in Hospice Care
Appalachian Region; Child; Hospices; Medicaid; Retrospective Studies; Rural; Urban
Objective The goal of this study was to compare rural and urban pediatric hospice patients in Appalachia. Methods Using a retrospective, nonexperimental design, we sought to compare characteristics of Appalachian rural and urban children younger than 21 years enrolled in the Medicaid hospice benefit. Descriptive statistics were calculated on the demographic, hospice, and clinical characteristics of children from Appalachia. Comparisons were calculated using Pearson chi2 for proportions and the Student t test for means. Results Less than half of the 1788 Appalachian children admitted to hospice care resided in rural areas (40%). Compared with children in urban areas of Appalachia, rural children were significantly younger (8 years vs 9.5 years) and more often had a complex chronic condition (56.0% vs 35.1%) and comorbidities (38.5% vs 17.0%) with technology dependence (32.6% vs 17.0%). Children in rural Appalachian were commonly from communities in the southern region of Appalachia (27.9% vs <10.0%), with median household incomes <$50,000/year (96.7% vs 22.4%). Significant differences were present in clinical care between rural and urban Appalachian children. Rural children had longer lengths of stay in hospice care (38 days vs 11 days) and were less likely to use the emergency department during hospice admission (19.0% vs 43.0%). These children more often visited their primary care provider (49.9% vs 31.3%) and sought care for symptoms from nonhospice providers (18.1% vs 10.0%) while admitted to hospice. Conclusions Our results suggest that children admitted to hospice care in rural versus urban Appalachia have distinct characteristics. Rural children are admitted to hospice care with significant medical complexities and reside in areas of poverty. Hospice care for rural children suggests a continuity of care with longer hospice stays and fewer transitions to the emergency department; however, the potential for care fragmentation is present, with frequent visits to primary care and nonhospice providers for symptom management. Understanding the unique characteristics of children in Appalachia may be essential for advancing knowledge and care for these children at the end of life. Future research examining geographic variation in hospice care in Appalachia is warranted. Copyright © Lippincott Williams & Wilkins.
Fornehed MLC; Svynarenko R; Keim-Malpass J; Cozad MJ; Qualls KA; Stone WL; Lindley LC
Southern Medical Journal
2022
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<a href="http://doi.org/10.14423/SMJ.0000000000001365" target="_blank" rel="noreferrer noopener">10.14423/SMJ.0000000000001365</a>
Lasting Legacy: Maternal Perspectives of Perinatal Palliative Care
Female; Fetal mortality; hospice; Infant; mothers; Newborn; palliative care; perinatal; Perinatal Care organization & administration; prenatal; Prenatal Diagnosis; Retrospective Studies
BACKGROUND: Many of the leading causes of infant mortality are diagnosed prenatally, presenting providers with the ability to present perinatal palliative care planning as an option. OBJECTIVE: Our study adds to the literature both by describing infant interaction with the health care system and by gaining deeper understanding of the maternal experience after being offered perinatal palliative care. METHODS: The study was conducted at a public university-based medical center in the Midwest. Phase 1 consisted of a retrospective review of electronic medical records of 27 mother-infant pairs offered perinatal palliative care, 18 of whom elected to develop a perinatal palliative care. Phase 2 consisted of a focus group and interviews of seven of the mothers. RESULTS: In the initial phase of this study, results revealed differences regarding the infant's end-of-life trajectory, including location of death, number of invasive procedures, and death in the setting of withholding versus withdrawing life-sustaining treatment. Highlighting that without a perinatal palliative care plan in place, the default treatment for infants with prenatally diagnosed life-limiting conditions is likely to be invasive and painful with often times minimal likelihood of long-term survival. Analysis of interview and focus group data revealed three themes: care, choice, and legacy. CONCLUSION: The authors used their experience with the health care system to draw implications for practice from the focus group and interview data, which care can serve to promote women feeling cared for and cared about, as well as promote opportunities for hope during a fragile pregnancy.
Kamrath HJ; Osterholm E; Stover-Haney R; George T; O'Connor-Von S; Needle J
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.2018.0303" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.0303</a>
COVID-19 in pediatric palliative care: what can we learn from the pandemic and possible future directions
Child; Covid-19; epidemiology; Humans; Palliative Care; Pandemics; Retrospective Studies; SARS-CoV-2
INTRODUCTION: Patients in pediatric palliative care (PPC) live with multiple comorbidities which represent a risk factor for severe form of COVID-19. METHODS: This monocentric retrospective study was performed at the PPC Center of Padua (Italy). Testing methodology, prevention strategies and infection characteristics were documented and compared during the first and second peak of SARS-CoV-2 infection. RESULTS: Between April-June 2020 a population swab screening was performed and a strong reduction of the habitual family support was observed. Between November 2020-January 2021 swab testing was limited to specific cases and the support network for families was partially restored. Incidence of COVID-19 was low, resulting in 0.04% of total pediatic cases in the Veneto Region. No severe forms were observed. CONCLUSION: The use of adequate preventive measures by families and support networks associated with testing in specific contests is safe, cost effective and has a minor impact on caregiver's care load.
Avagnina I; Zanin A; Lazzarin P; Grigolon E; Shahi A; Papa S; Giacomelli L; Benini F
Annali dell'Istituto Superiore di Sanità
2021
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<a href="http://doi.org/10.4415/ann_21_04_03" target="_blank" rel="noreferrer noopener">10.4415/ann_21_04_03</a>
Surgical Interventions During End-of-Life Hospitalizations in Children's Hospitals
Adolescent; Age Factors; Biopsy; Catheterization; Child; Chronic Disease; Ethnicity; Hospitalization; Infant; International Classification of Diseases; Newborn Infant; Pediatric Hospitals; Preschool Child; Prosthesis Implantation; Race Factors; Retrospective Studies; Salvage Therapy; Surgical Procedures, Operative; Terminal Care; United States; Young Adult
OBJECTIVES: To characterize patterns of surgery among pediatric patients during terminal hospitalizations in children's hospitals. METHODS: We reviewed patients ≤20 years of age who died among 4 424 886 hospitalizations from January 2013-December 2019 within 49 US children's hospitals in the Pediatric Health Information System database. Surgical procedures, identified by International Classification of Diseases procedure codes, were classified by type and purpose. Descriptive statistics characterized procedures, and hypothesis testing determined if undergoing surgery varied by patient age, race and ethnicity, or the presence of chronic complex conditions (CCCs). RESULTS: Among 33 693 terminal hospitalizations, the majority (n = 30 440, 90.3%) of children were admitted for nontraumatic causes. Of these children, 15 142 (49.7%) underwent surgery during the hospitalization, with the percentage declining over time (P < .001). When surgical procedures were classified according to likely purpose, the most common were to insert or address hardware or catheters (31%), explore or aid in diagnosis (14%), attempt to rescue patient from mortality (13%), or obtain a biopsy (13%). Specific CCC types were associated with undergoing surgery. Surgery during terminal hospitalization was less likely among Hispanic children (47.8%; P < .001), increasingly less likely as patient age increased, and more so for Black, Asian American, and Hispanic patients compared with white patients (P < .001). CONCLUSIONS: Nearly half of children undergo surgery during their terminal hospitalization, and accordingly, pediatric surgical care is an important aspect of end-of-life care in hospital settings. Differences observed across race and ethnicity categories of patients may reflect different preferences for and access to nonhospital-based palliative, hospice, and end-of-life care.
Traynor MD; Antiel RM; Camazine MN; Blinman TA; Nance ML; Eghtesady P; Lam SK; Hall M; Feudtner C
Pediatrics
2021
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<a href="http://doi.org/10.1542/peds.2020-047464" target="_blank" rel="noreferrer noopener">10.1542/peds.2020-047464</a>
Neonatal donation: are newborns too young to be recognized?
Infant; Retrospective Studies; Newborn Infant; End-of-life care; Tissue and Organ Procurement; Brain Death; Tissue Donors; Pediatric; Organ donation; Neonatal; Death; Tissue donation
Neonatal organ and tissue donation is not common practice in the Netherlands. At the same time, there is a transplant waiting list for small size-matched organs and tissues. Multiple factors may contribute to low neonatal donation rates, including a lack of awareness of this option. This study provides insight into potential neonatal organ and tissue donors and reports on how many donors were actually reported to the procurement organization. We performed a retrospective analysis of the mortality database and medical records of two largest neonatal intensive care units (NICUs) in the Netherlands. This study reviewed records of neonates with a gestational age >37 weeks and weight >3000g who died in the period from January 1, 2005 through December 31, 2016. During the study period, 259 term-born neonates died in the two NICUs. In total, 132 neonates with general contra-indications for donation were excluded. The medical records of 127 neonates were examined for donation suitability. We identified five neonates with documented brain death who were not recognized as potential organ and/or tissue donors. Of the remaining neonates, 27 were found suitable for tissue donation. One potential tissue donor had been reported to the procurement organization. In three cases, the possibility of donation was brought up by parents.Conclusion: A low proportion (2%) of neonates who died in the NICUs were found suitable for organ donation, and a higher proportion (12%) were found suitable for tissue donation. We suggest that increased awareness concerning the possibility of neonatal donation would likely increase the identification of potential neonatal donors. What is Known: • There is an urgent need for very small organs and tissues from neonatal donors What is New: • A number of neonates who died in the NICU were suitable organ or/and tissue donors but were not recognized as donors. • Knowledge on neonatal donation possibilities is also important for proper counseling of parents who sometimes inquire for the possibility of organ and tissue donation.
Vileito A; Hulzebos CV; Toet MC; Baptist DH; Verhagen EAA; Siebelink MJ
European Journal of Pediatrics
2021
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<a href="http://doi.org/10.1007/s00431-021-04139-3" target="_blank" rel="noreferrer noopener">10.1007/s00431-021-04139-3</a>
Discharge Communication Practices for Children With Medical Complexity: A Retrospective Chart Review
Attitude of Health Personnel; Child; Communication; Hospitalists; Patient Discharge; Retrospective Studies
OBJECTIVES: Children with medical complexity (CMC) have an increased risk of adverse events after hospital discharge. Authors of previous studies have evaluated discharge communication practices with primary care providers (PCPs) in adults and general pediatric patients. There is a lack of evidence surrounding hospitalist communication practices at discharge for CMC. In this study, we explore hospitalist-to-PCP communication for CMC at hospital discharge. METHODS: A retrospective chart review was performed at a single tertiary care children's hospital. The population included patients with ≥1 complex chronic condition who were discharged from the pediatric hospitalist team. The presence, type, and quality of discharge communication were collected. A descriptive analysis in which we used χ(2), t test, Wilcoxon rank testing, and odds ratios was conducted to identify differences in communication practices in CMC. RESULTS: We identified 368 eligible patients and reviewed their electronic medical records. Discharge communication was documented for 59% of patient encounters. Communication was less likely to occur for patients with technology dependence (P = .01), older patients (P = .02), and those who were admitted to a teaching service (P = .04). The quality of discharge summaries did not change for patients with technology dependence compared with patients without technology dependence. CONCLUSIONS: Communication with the PCP at discharge was less likely to be documented in children with technology dependence. Hospitalists may encounter barriers in completion of appropriate and timely discharge communication with PCPs for CMC. Consistent handoff processes could be used to improve care for our patients with enhanced coordination needs.
Rush M; Herrera N; Melwani A
Hospital Pediatrics
2020
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<a href="http://doi.org/10.1542/hpeds.2020-0021" target="_blank" rel="noreferrer noopener">10.1542/hpeds.2020-0021</a>
Care Coordination Program for Children With Complex Chronic Conditions Discharged From a Rural Tertiary-Care Academic Medical Center
Academic Medical Centers; Adolescent; Child; Preschool Child; Chronic Disease; Hospital Emergency Service; Infant; Patient Discharge; Retrospective Studies
OBJECTIVES: Hospital discharge offers an opportunity to initiate coordination of follow-up care, preventing readmissions or emergency department (ED) recidivism. We evaluated how revisits and costs of care varied in a 12-month period between children in a care coordination program at our center (enrolled after hospital discharge with a tracheostomy or on a ventilator) and children with complex chronic condition discharges who were not enrolled. METHODS: Children ages 1 to 17 years were retrospectively included if they had a hospital discharge in 2017 with an International Classification of Diseases, 10th Revision code meeting complex chronic condition criteria or if they were in active follow-up with the care coordination program. Revisits and total costs of care were compared over 2018 for included patients. RESULTS: Seventy patients in the program were compared with 56 patients in the control group. On bivariate analysis, the median combined number of hospitalizations and ED visits in 2018 was lower among program participants (0 vs 1; P = .033), and program participation was associated with lower median total costs of care in 2018 ($700 vs $3200; P = .024). On multivariable analysis, care coordination program participation was associated with 59% fewer hospitalizations in 2018 (incidence rate ratio: 0.41; 95% confidence interval: 0.23 to 0.75; P = .004) but was not significantly associated with reduced ED visits or costs. CONCLUSIONS: The care coordination program is a robust service spanning the continuum of patient care. We found program participation to be associated with reduced rehospitalization, which is an important driver of costs for children with medical complexity.
Parker CL; Wall B; Tumin D; Stanley R; Warren L; Deal K; Stroud T; Crickmore K; Ledoux M
Hospital Pediatrics
2020
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<a href="http://doi.org/10.1542/hpeds.2019-0323" target="_blank" rel="noreferrer noopener">10.1542/hpeds.2019-0323</a>
What Do We Know about Pediatric Palliative Care Patients Consulting to the Pediatric Emergency Department?
child; emergency health service; hospitalization; palliative care; referral and consultation; retrospective studies
Objectives The objective of this study was to describe the characteristics of pediatric palliative care (PPC) patients presenting to a pediatric emergency department (ED) and these patients' ED visits. Methods This retrospective chart review was conducted from April 1, 2007, to March 31, 2012, in a tertiary care pediatric university-affiliated hospital. Eligible patients had initial PPC consultations during the study period; all ED visits by these patients were included. Data were drawn from the ED's electronic data system and patient's medical chart. Results A total of 290 new patients were followed by the PPC team, and 94 (32.4%) consulted the ED. Pediatric palliative care patients who consulted the ED had a median age of 7 years and baseline diagnoses of cancer (39.4%) or encephalopathy (27.7%). No patients died in the ED, but 36 (38.3%) died in hospital after an ED visit and 18 (19.1%) within 72 hours of admission. Pediatric palliative care patients consulted 219 times, with a median number of visits per patient of 2 (range, 1-8). They presented acutely ill as per triage scales. Reasons for consultation included respiratory distress/dyspnea (30.6%), pain (12.8%), seizure (11.4%), and fever (9.1%). Patients were often admitted to wards (61.2%) and the pediatric intensive care unit (7.3%). Two thirds (65.7%) of patients had signed an advanced care directive at the time of their visit. Discussions about goals of care occurred in 37.4% of visits. Conclusions Pediatric palliative care patients present to the ED acutely ill, often at their end of life, and goals of care are not always discussed. This is a first step toward understanding how to improve PPC patients' ED care. Copyright © Wolters Kluwer Health, Inc. All rights reserved.
Gaucher N; Humbert N; Gauvin F
Pediatric Emergency Care
2021
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<a href="http://doi.org/10.1097/PEC.0000000000001620" target="_blank" rel="noreferrer noopener">10.1097/PEC.0000000000001620</a>
Treatment limitation and advance planning: Hospital-wide audit of paediatric death
advanced care planning; Child; documentation; end-of-life care; Hospitalization; Pediatric Hospitals; paediatrics; Palliative Care; Retrospective Studies; Terminal Care; treatment limitation
AIM: To examine paediatric deaths following withdrawal or withholding of medical treatment (WWMT) from a hospital-wide perspective and identify changes over a 10 year period. METHODS: A retrospective review of medical records was conducted for all paediatric inpatient deaths at the Royal Children's Hospital, Melbourne from April 2015 to April 2016, and results were compared to 2007 data from our centre. χ(2) tests were used for comparisons. RESULTS: A total of 101 deaths occurred in the inpatient setting in 2015-2016. Most deaths followed WWMT (88/101, 87%) and occurred in children with pre-existing chronic conditions (85/101, 85%). There was a shift to earlier discussions with parents regarding WWMT compared to 10 years prior. Cases where discussions began prior to the last admission increased from 4 to 19% (P = 0.004). There was increased paediatric palliative care (PPC) involvement (10 vs. 37%, P < 0.001), and a slightly greater proportion of children died outside of intensive care (16 vs. 22%, P = 0.25). In 2015-2016, subgroup analysis showed that children who died as inpatients but outside of intensive care were 76% more likely to have PPC involved than those who died in intensive care (P < 0.001). Their families were 51% more likely to have discussed WWMT with medical staff before the last admission (P < 0.001). CONCLUSIONS: The last decade has seen an increase in PPC involvement and advance discussions around WWMT at our centre. Both of these are associated with death outside of intensive care.
Audigé M; Gillam L; Stark Z
Journal of Paediatrics and Child Health
2020
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<a href="http://doi.org/10.1111/jpc.14771" target="_blank" rel="noreferrer noopener">10.1111/jpc.14771</a>
Prediction of Acquired Morbidity Using Illness Severity Indices in Pediatric Intensive Care Patients
Infant; Adolescent; Child; Humans; Risk Factors; Child Preschool; Severity of Illness Index; Retrospective Studies; Infant Newborn; Hospital Mortality; Singapore/epidemiology; Intensive Care Units Pediatric; Morbidity; Critical Care
OBJECTIVES: To assess the ability of two illness severity scores, Pediatric Logistic Organ Dysfunction Score 2 and Pediatric Index of Mortality 3, in predicting PICU-acquired morbidity. DESIGN: Retrospective chart review conducted from April 2015 to March 2016. SETTING: Single-center study in a multidisciplinary PICU in a tertiary pediatric hospital in Singapore. PATIENTS: The study included all index admissions of patients 0-18 years old to the PICU during the study period. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Three outcomes were assessed at hospital discharge: mortality, survival with new morbidity defined as an increase in the Functional Status Scale score of greater than or equal to 3 points from baseline, and survival without morbidity. Of 577 consecutive admissions, 95 were excluded: 82 readmissions, 10 patients greater than or equal to 18 years old, two patients with missing baseline data, and one transferred to another PICU. Of 482 patients, there were 37 hospital deaths (7.7%) and 39 (8.1%) with acquired new morbidity. Median admission Pediatric Logistic Organ Dysfunction Score 2 and Pediatric Index of Mortality 3 scores differed among the three outcome groups. In addition, differences were found in emergency admission and neurologic diagnosis rates, PICU mechanical ventilation usage rates, and PICU length of stay. The highest proportion of neurologic diagnoses was observed in the new morbidity group. The final model simultaneously predicted risks of mortality, survival with new morbidity and survival without morbidity using admission Pediatric Logistic Organ Dysfunction Score 2 score, admission type, neurologic diagnosis, and preexisting chronic disease. Pediatric Logistic Organ Dysfunction Score 2 was superior to Pediatric Index of Mortality 3 in predicting risks of mortality and new morbidity, as indicated by volume under surface values of 0.483 and 0.362, respectively. CONCLUSIONS: Risk of mortality, survival with new morbidity, and survival without morbidity can be predicted simultaneously using admission Pediatric Logistic Organ Dysfunction Score 2, admission type, admission diagnosis, and preexisting chronic disease. Future independent studies will be required to validate the proposed model before clinical implementation.
Senna S; Ong C; Wong JJ; Allen JC Jr; Sultana R; Lee JH
Pediatric Critical Care Medicine
2020
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<a href="http://doi.org/10.1097/pcc.0000000000002417" target="_blank" rel="noreferrer noopener">10.1097/pcc.0000000000002417</a>
Validation of an Electronic Pediatric Index of Mortality 2 Score in a Mixed Quaternary PICU
Infant; Child; Humans; Severity of Illness Index; Retrospective Studies; Hospital Mortality; Cohort Studies; Intensive Care Units Pediatric; Electronics
OBJECTIVE: To assess the validity of an electronic version of the Pediatric Index of Mortality 2 score. DESIGN: Retrospective observational study. SETTING: Pediatric and cardiac ICUs at a quaternary medical center. PATIENTS: Patients more than 60 days old admitted to the PICU or cardiac ICU between January 1, 2010, and December 31, 2014. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: After adapting the Pediatric Index of Mortality 2 score into a version applicable to retrospective electronic health record data, it was validated in a mixed-ICU cohort. A manually ascertained Pediatric Index of Mortality 2 score was directly compared with the electronically derived electronic version of the Pediatric Index of Mortality 2 score in 100 randomly selected patients with good agreement between score components with nine out of 11 components having an intraclass correlation coefficient or Cohen κ greater than or equal to 0.6. In assessing the electronic version of the Pediatric Index of Mortality 2 score in the entire cohort of 12,582 patient encounters, it had good discrimination with area under the receiver operating curve of 0.89, appropriate calibration with no significant difference between observed and expected deaths, and excellent predictive ability with a Brier score of 0.0135. CONCLUSIONS: The Pediatric Index of Mortality 2 score can be adapted to utilize retrospective electronic health record data with acceptable discrimination, calibration and accuracy a large mixed-ICU cohort.
Joyce EL; Crana CM; Yabes J; Kellum JA
Pediatric Critical Care Medicine
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/10.1097/pcc.0000000000002347" target="_blank" rel="noreferrer noopener">10.1097/pcc.0000000000002347</a>
Lasting Legacy: Maternal Perspectives of Perinatal Palliative Care
Infant; Humans; Female; palliative care; hospice; Retrospective Studies; Adult; Palliative Care/*organization & administration; perinatal; Prenatal Diagnosis; Mothers/*psychology; Newborn; Patient Care Planning/*organization & administration; prenatal; Fetal Diseases/diagnosis/*mortality; Perinatal Care/*organization & administration
BACKGROUND: Many of the leading causes of infant mortality are diagnosed prenatally, presenting providers with the ability to present perinatal palliative care planning as an option. OBJECTIVE: Our study adds to the literature both by describing infant interaction with the health care system and by gaining deeper understanding of the maternal experience after being offered perinatal palliative care. METHODS: The study was conducted at a public university-based medical center in the Midwest. Phase 1 consisted of a retrospective review of electronic medical records of 27 mother-infant pairs offered perinatal palliative care, 18 of whom elected to develop a perinatal palliative care. Phase 2 consisted of a focus group and interviews of seven of the mothers. RESULTS: In the initial phase of this study, results revealed differences regarding the infant's end-of-life trajectory, including location of death, number of invasive procedures, and death in the setting of withholding versus withdrawing life-sustaining treatment. Highlighting that without a perinatal palliative care plan in place, the default treatment for infants with prenatally diagnosed life-limiting conditions is likely to be invasive and painful with often times minimal likelihood of long-term survival. Analysis of interview and focus group data revealed three themes: care, choice, and legacy. CONCLUSION: The authors used their experience with the health care system to draw implications for practice from the focus group and interview data, which care can serve to promote women feeling cared for and cared about, as well as promote opportunities for hope during a fragile pregnancy.
Kamrath H J; Osterholm E; Stover-Haney R; George T; O'Connor-Von S; Needle J
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.2018.0303" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.0303</a>
Burden of treatment in the face of childhood cancer: A quantitative study using medical records of deceased children
Adaptation; Adolescent; burden of treatment; Central Nervous System Neoplasms/therapy; Child; Death; family; Female; Hospitalization; Humans; Infant; inpatient stays; Length of Stay; leukaemia; Leukemia/therapy; Male; Medical Records; Neoplasms/*therapy; Newborn; paediatric oncology; place of death; Preschool; Psychological; Retrospective Studies; Switzerland; Terminal Care
Lived experiences of childhood cancer patients and their families have been described as interrupted and as a loss of normal life. Apart from symptoms due to the cancer disease, families continuously experience burden of treatment. Since coping capacities are unique to each individual, we captured variables that offer objective measures of treatment burden, with a particular focus on the disruptive effects of treatment on families' lives. Our sample was comprised by 193 children that died of cancer. Medical records were extracted retrospectively. Quantitative data were statistically analysed with respect to variables related to treatment burden. Deceased children with cancer and their families faced a significant burden of treatment. Results revealed that deceased leukaemia patients had a higher number of inpatient stays, spent more time in the hospital both during their illness and during the last month of their life, and were more likely to die in the hospital when compared to deceased patients with CNS neoplasms and with other diagnoses. Our findings highlight the disruptive effects of treatment that are likely to have a great impact on families' daily life, that go beyond exclusively focusing on side effects, and that needs to be taken into account by the treating staff.
Rost M; Wangmo T; Rakic M; Acheson E; Rischewski J; Hengartner H; Kuhne T; Elger B S
European Journal of Cancer Care (Engl)
2018
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<a href="http://doi.org/10.1111/ecc.12879" target="_blank" rel="noreferrer noopener">10.1111/ecc.12879</a>
Dystonia in neurodegeneration with brain iron accumulation: outcome of bilateral pallidal stimulation
Male; Treatment Outcome; Young Adult; Child; Humans; Adult; Adolescent; Female; Child Preschool; Infant; Retrospective Studies; Brain Diseases/physiopathology/therapy; Brain/physiopathology; Deep Brain Stimulation/adverse effects/methods; Dystonia/physiopathology/therapy; Functional Laterality; Globus Pallidus/physiopathology; Iron/metabolism; Neurodegenerative Diseases/physiopathology/therapy; tone and motor problems; IND; surgical intervention; bilateral pallidal stimulation; dystonia
Neurodegeneration with brain iron accumulation encompasses a heterogeneous group of rare neurodegenerative disorders that are characterized by iron accumulation in the brain. Severe generalized dystonia is frequently a prominent symptom and can be very disabling, causing gait impairment, difficulty with speech and swallowing, pain and respiratory distress. Several case reports and one case series have been published concerning therapeutic outcome of pallidal deep brain stimulation in dystonia caused by neurodegeneration with brain iron degeneration, reporting mostly favourable outcomes. However, with case studies, there may be a reporting bias towards favourable outcome. Thus, we undertook this multi-centre retrospective study to gather worldwide experiences with bilateral pallidal deep brain stimulation in patients with neurodegeneration with brain iron accumulation. A total of 16 centres contributed 23 patients with confirmed neurodegeneration with brain iron accumulation and bilateral pallidal deep brain stimulation. Patient details including gender, age at onset, age at operation, genetic status, magnetic resonance imaging status, history and clinical findings were requested. Data on severity of dystonia (Burke Fahn Marsden Dystonia Rating Scale-Motor Scale, Barry Albright Dystonia Scale), disability (Burke Fahn Marsden Dystonia Rating Scale-Disability Scale), quality of life (subjective global rating from 1 to 10 obtained retrospectively from patient and caregiver) as well as data on supportive therapy, concurrent pharmacotherapy, stimulation settings, adverse events and side effects were collected. Data were collected once preoperatively and at 2-6 and 9-15 months postoperatively. The primary outcome measure was change in severity of dystonia. The mean improvement in severity of dystonia was 28.5% at 2-6 months and 25.7% at 9-15 months. At 9-15 months postoperatively, 66.7% of patients showed an improvement of 20% or more in severity of dystonia, and 31.3% showed an improvement of 20% or more in disability. Global quality of life ratings showed a median improvement of 83.3% at 9-15 months. Severity of dystonia preoperatively and disease duration predicted improvement in severity of dystonia at 2-6 months; this failed to reach significance at 9-15 months. The study confirms that dystonia in neurodegeneration with brain iron accumulation improves with bilateral pallidal deep brain stimulation, although this improvement is not as great as the benefit reported in patients with primary generalized dystonias or some other secondary dystonias. The patients with more severe dystonia seem to benefit more. A well-controlled, multi-centre prospective study is necessary to enable evidence-based therapeutic decisions and better predict therapeutic outcomes.
Timmermann L; Pauls K A; Wieland K; Jech R; Kurlemann G; Sharma N; Gill S S; Haenggeli C A; Hayflick S J; Hogarth P; Leenders K L; Limousin P; Malanga C J; Moro E; Ostrem J L; Revilla F J; Santens P; Schnitzler A; Tisch S; Valldeoriola F; Vesper J; Volkmann J; Woitalla D; Peker S
Brain
2010
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<a href="http://doi.org/10.1093/brain/awq022" target="_blank" rel="noreferrer noopener">10.1093/brain/awq022</a>
Respiratory complications of mucopolysaccharide storage disorders
Male; Child; Humans; Adult; Adolescent; Female; Child Preschool; Infant; Retrospective Studies; Sleep Apnea Syndromes/et [Etiology]; Mucopolysaccharidoses/co [Complications]; Respiratory Tract Diseases/et [Etiology]; Airway Obstruction/et [Etiology]; Anesthesia General/ae [Adverse Effects]; Cardiovascular Diseases/et [Etiology]; Intubation Intratracheal/ae [Adverse Effects]; Lung Diseases/et [Etiology]; Lung Diseases/pp [Physiopathology]; Mucopolysaccharidoses/mo [Mortality]; Mucopolysaccharidoses/pp [Physiopathology]; Respiratory Tract Diseases/pp [Physiopathology]; Respiratory Tract Diseases/ra [Radiography]; Spinal Diseases/et [Etiology]; Spinal Diseases/ra [Radiography]; breathing difficulties; MLII; MLIII; MPSI; MPSII; MPSVI; surgical interventions; pharmacologic interventions; tonsillectomy; adenoidectomy; tracheostomy; diuretics; theophylline; digoxin; beta adrenergic blockers; calcium antagonists; respiratory problems
Twenty-one patients with the diagnosis of mucopolysaccharidosis or mucolipidosis and a history of respiratory complaints or thorough respiratory evaluation were studied retrospectively. Anatomic factors affecting respiratory status included: (i) upper airway narrowing by hypertrophied tongue, tonsils, adenoids, and mucous membranes; (ii) lower airway narrowing by glycosaminoglycan deposition within the tracheobronchial mucosa; (iii) decreased thoracic dimensions due to scoliosis and thoracic hyperkyphosis; and (iv) decreased abdominal dimensions due to lumbar hyperlordosis, gibbus formation and hepatosplenomegaly. Cardiac and neurologic involvement, while present, did not play primary roles in the development of respiratory disease. The functional consequences of these findings included increased risk of developing: (i) respiratory tract infections; (ii) airway compromise during or after anesthesia or sedation; (iii) dyspnea on exertion; (iv) obstructive lung disease; (v) obstructive sleep apnea; and (vi) cor pulmonale. A management approach is presented which can reduce the morbidity and mortality experienced by these patients.
Semenza G L; Pyeritz R E
Medicine
1988
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/10.1097/00005792-198807000-00002" target="_blank" rel="noreferrer noopener">10.1097/00005792-198807000-00002</a>
Sleep disordered breathing in childhood-onset acid maltase deficiency
Male; Child; Humans; Adolescent; Female; Retrospective Studies; Polysomnography; Positive-Pressure Respiration; Respiratory Function Tests; Muscle Weakness; Blood Gas Analysis; Quality of Life; Respiration; Glycogen Storage Disease Type II/pp [Physiopathology]; Sleep Apnea Syndromes/pp [Physiopathology]; Sleep Apnea Syndromes/th [Therapy]; Muscle Strength; Respiration Disorders/pp [Physiopathology]; Respiration Disorders/th [Therapy]; Sleep/ph [Physiology]; breathing difficulties; glycogen storage disease type II; physical intervention; non-invasive positive pressure ventilation; sleep apnea
OBJECTIVES: To clarify the feature of sleep disordered breathing (SDB) associated with childhood-onset acid maltase deficiency (AMD): the progressive nature of SDB and the stage of AMD.;STUDY DESIGN: We retrospectively studied 4 patients with childhood-onset AMD by analyzing the results of neurological examinations for muscle wasting and muscle strength and the data on venous gas and from a pulmonary function test and nocturnal polysomnography (PSG).;RESULTS: Three out of the 4 patients showed muscular symptoms including myalgia, lordoscoliosis, muscle wasting and muscle weakness. They also complained of sleep-related symptoms such as tiredness in the morning and daytime sleepiness. All of them showed SDB by PSG, even in a patient in the earliest stage who exhibited no signs or symptoms of muscle weakness. In 3 patients, noninvasive intermittent positive pressure ventilation during sleep was introduced; and thereafter sleep-related symptoms were resolved and no lower respiratory infection reoccurred. Although their quality of life was improved, no improvement of respiratory function was shown by spirometry over a 2-year follow-up period.;CONCLUSIONS: SDB seems to be common in childhood-onset AMD, which is not always accompanied by daytime muscular symptoms, especially in mild patients. PSG should be utilized for detecting SDB, which could be one of the earliest signs of respiratory muscle involvement in childhood-onset AMD.
Nabatame S; Taniike M; Sakai N; Kato-Nishimura K; Mohri I; Kagitani-Shimono K; Okinaga T; Tachibana N; Ozono K
Brain and Development
2009
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.braindev.2008.03.007" target="_blank" rel="noreferrer noopener">10.1016/j.braindev.2008.03.007</a>
Change in gross motor abilities of girls and women with rett syndrome over a 3- to 4-year period
Age Factors; Disease Progression; Young Adult; Humans; Longitudinal Studies; Adult; Adolescent; Female; Retrospective Studies; Australia; Linear Models; Mutation/genetics; Methyl-CpG-Binding Protein 2/genetics; Arginine/genetics; Motor Skills/physiology; Movement Disorders/etiology/genetics; Rett Syndrome/complications/genetics; tone and motor problems; Rett syndrome; trajectory; characteristics
Rett syndrome is a rare but severe neurological disorder typically associated with a mutation in the MECP2 gene. We describe change in gross motor function over 3 to 4 years for 70 subjects participating in the Australian Rett Syndrome Database. Linear regression was used to assess relationships with age, genotype, and general and complex gross motor skills scores measured on the Gross Motor Scale for Rett syndrome. Skills were slightly better or maintained in approximately 40% of subjects and slightly decreased in approximately 60%. Teenagers and women who walked in 2004 were less likely to lose complex skills than those younger. Girls with a p.R294X mutation were more likely to lose complex motor skills, otherwise skill changes were spread across the mutation categories. In conclusion, small changes were observed over this period with greater stability of skills in teenagers and women with the ability to walk.
Foley K R; Downs J; Bebbington A; Jacoby P; Girdler S; Kaufmann W E; Leonard H
Journal of Child Neurology
2011
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/10.1177/0883073811402688" target="_blank" rel="noreferrer noopener">10.1177/0883073811402688</a>
Esophageal strictures in children with recessive dystrophic epidermolysis bullosa: an 11-year experience with fluoroscopically guided balloon dilatation
Adolescent; Barium; Catheterization; Child; Preschool; Epidermolysis Bullosa; Dystrophica/co [Complications]; Esophageal Stenosis/et [Etiology]; Esophageal Stenosis/th [Therapy]; Female; Humans; Male; Retrospective Studies; Treatment Outcome; 24GP945V5T (Barium); feeding difficulties; surgical intervention; fluoroscopically guided balloon dilatation
BACKGROUND: Recessive dystrophic epidermolysis bullosa (RDEB) is an inherited blistering skin disorder that is associated with significant esophageal strictures, resulting in dysphagia and nutritional failure. Although endoscopically guided balloon dilatation is a widely used treatment, the use of an endoscope carries the risk of oropharyngeal trauma. To minimize this risk, we have eliminated its use. METHOD: We reviewed the charts of all RDEB patients who underwent balloon dilatation for esophageal strictures between August 1993 and March 2005. Balloon dilatation procedures were performed under anesthesia and with fluoroscopic control. RESULTS: We performed 92 dilatations on 25 RDEB patients. Most patients reported immediate relief of symptoms, rapid recovery, and resumption of adequate food intake within 1 day. The mean interval between dilatations was 1 year. Six patients (24%) have required only 1 dilatation, and 1 of these 6 has had a dilatation-free interval of 25 months. One patient with a history of multiple dilatations has remained dilatation-free for 5 years. No procedure-related complications have occurred. CONCLUSIONS: Fluoroscopically guided balloon dilatation is a gentle, safe, effective, and repeatable technique that should be considered as a first line of treatment.
Azizkhan R G; Stehr W; Cohen A P; Wittkugel E; Farrell M K; Lucky A W; Hammelman B D; Johnson N D; Racadio J M
Journal of Pediatric Surgery
2006
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<a href="http://doi.org/10.1016/j.jpedsurg.2005.10.007" target="_blank" rel="noreferrer noopener">10.1016/j.jpedsurg.2005.10.007</a>
Deep brain stimulation in children: experience and technical pearls
Adolescent; Adult; Age; Factors Brain/pa [Pathology]; Brain/ra [Radiography]; Child; Preschool; Deep Brain Stimulation/ae [Adverse Effects]; Deep Brain Stimulation/mt [Methods]; Dystonia/pp [Physiopathology]; Dystonia/th [Therapy]; Female; Follow-Up Studies; Humans; Magnetic Resonance Imaging; Male; Movement; Retrospective Studies; Tomography; X-Ray Computed Treatment Outcome; tone and motor problems; Glutaric acidemia type I; Lesch-Nyhan syndrome; deep brain stimulation; secondary dystonia
OBJECT: Deep brain stimulation (DBS) is an established technique for the treatment of several movement disorders in adults. However, the technical approach, complications, and results of DBS in children have not been well documented. METHODS: A database of DBS implantations performed at a single institution, prospectively established in 1998, was reviewed for patients who received DBS prior to the age of 18. Diagnoses, surgical technique, and complications were noted. Outcomes were assessed using standard rating scales of neurological function. RESULTS: Of 815 patients undergoing DBS implantation over a 12-year period, 31 were children (mean age at surgery 13.2 years old, range 4-17 years old). Diagnoses included the following: DYT1 primary dystonia (autosomal dominant, Tor1ADELTAGAG mutation, 10 cases), non-DYT1 primary dystonia (3 cases), secondary dystonia (11 cases), neurodegeneration with brain iron accumulation (NBIA, 3 cases), levodopa-responsive parkinsonism (2 cases), Lesch-Nyhan disease (1 case), and glutaric aciduria Type 1 (1 case). Six children ages 15-17 years old underwent awake microelectrode-guided surgery. For 25 children operated under general anesthesia, the surgical technique evolved from microelectrode-guided surgery to image-guided surgeries using real-time intraoperative MR imaging or CT for lead location confirmation. Complications included 5 hardware infections, all in children younger than 10 years old. At 1 year after implantation, patients with DYT1 dystonia had a mean improvement in the Burke-Fahn-Marsden Dystonia Rating Scale movement subscore of 75%, while those with secondary dystonia had only small improvements. Outcomes in the 3 children with NBIA were disappointing. CONCLUSIONS: Results of DBS in children with primary and secondary dystonias were similar to those in adults, with excellent results for DYT1 dystonia in children without fixed orthopedic deformity and much more modest results in secondary dystonia. In contrast to reported experience in adults with NBIA, these results in children with NBIA were poor. Infection risk was highest in the youngest patients.
Air E L; Ostrem J L; Sanger T D; Starr P A
Journal of Neurosurgery - Pediatrics
2011
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/10.3171/2011.8.PEDS11153" target="_blank" rel="noreferrer noopener">10.3171/2011.8.PEDS11153</a>
Do-Not-Resuscitate Orders in the Neonatal ICU: Experiences and Beliefs Among Staff
Attitude of Health Personnel; Attitudes; Female; Health Knowledge; Hospital/psychology; Humans; Intensive Care Units; Male; Medical Staff; Neonatal/statistics & numerical data; Nursing Staff; Practice; Professional-Family Relations; Resuscitation Orders/psychology; Retrospective Studies; Surveys and Questionnaires; United States; Withholding Treatment/statistics & numerical data
OBJECTIVES: Studies in adult patients have shown that do-not-resuscitate orders are often associated with decreased medical intervention. In neonatology, this phenomenon has not been investigated, and how do-not-resuscitate orders potentially affect clinical care is unknown. DESIGN: Retrospective medical record data review and staff survey responses about neonatal ICU do-not-resuscitate orders. SETTING: Four academic neonatal ICUs. SUBJECTS: Clinical staff members working in each neonatal ICU. INTERVENTIONS: Survey response collection and analysis. MEASUREMENTS AND MAIN RESULTS: Participating neonatal ICUs had 14-48 beds and 120-870 admissions/yr. Frequency range of do-not-resuscitate orders was 3-11 per year. Two-hundred fifty-seven surveys were completed (46% response). Fifty-nine percent of respondents were nurses; 20% were physicians. Over the 5-year period, 44% and 17% had discussed a do-not-resuscitate order one to five times and greater than or equal to 6 times, respectively. Fifty-seven percent and 22% had cared for one to five and greater than or equal to 6 patients with do-not-resuscitate orders, respectively. Neonatologists, trainees, and nurse practitioners were more likely to report receiving training in discussing do-not-resuscitate orders or caring for such patients compared with registered nurses and respiratory therapists (p < 0.001). Forty-one percent of respondents reported caring for an infant in whom interventions had been withheld after a do-not-resuscitate order had been placed without discussing the specific withholding with the family. Twenty-seven percent had taken care of an infant in whom interventions had been withdrawn under the same circumstances. Participants with previous experiences withholding or withdrawing interventions were more likely to agree that these actions are appropriate (p < 0.001). CONCLUSIONS: Most neonatal ICU staff report experience with do-not-resuscitate orders; however, many, particularly nurses and respiratory therapists, report no training in this area. Variable beliefs with respect to withholding and withdrawing care for patients with do-not-resuscitate orders exist among staff. Because neonatal ICU patients with do-not-resuscitate orders may ultimately survive, withholding or withdrawing interventions may have long-lasting effects, which may or may not coincide with familial intentions.
Arzuaga BH; Wraight CL; Cummings CL; Mao W; Miedema D; Brodsky DD
Pediatric Critical Care Medicine
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).
Trends in incidence, prevalence, and mortality of neuromuscular disease in Ontario, Canada: a population-based retrospective cohort study (2003-2014)
children; adolescent; adult; article; child; cohort analysis; female; human; major clinical study; male; palliative therapy; retrospective study; controlled study; palliative care; school child; Ontario; aged; health insurance; infant; young adult; age; America; amyotrophic lateral sclerosis; amyotrophic lateral sclerosis/ep [Epidemiology]; animals; APEC countries; Canada; childhood disease/ep [Epidemiology]; childhood diseases; Chordata; cohort studies; Commonwealth of Nations; data base; death rate; Developed Countries; disease course; disease prevalence; disease progression; eukaryotes; health care; Hominidae; Homo; human diseases; incidence; International Classification of Diseases; mammals; man; middle aged; mortality; mortality rates; muscles; neuromuscular disease/ep [Epidemiology]; neuromuscular diseases; neuromuscular disorders; North America; OECD Countries; planning; population research; preschool child; prevalence; primates; retrospective studies; sclerosis; spinal muscular atrophy/ep [Epidemiology]; spine; survival; trend study; trends; vertebrates
Background: Population trends of disease prevalence and incidence over time measure burden of disease and inform healthcare planning. Neuromuscular disorders (NMD) affect muscle and nerve function with varying degrees of severity and disease progression. Objective: Using health administrative databases we described trends in incidence, prevalence, and mortality of adults and children with NMD. We also explored place of death and use of palliative care. Methods: Population-based (Ontario, Canada) cohort study (2003 to 2014) of adults and children with NMD identified using International Classification of Disease and health insurance billing codes within administrative health databases. Results: Adult disease prevalence increased on average per year by 8% (95% confidence interval (CI) 6% to 10%, P<.001), with the largest increase in adults 18-39 years. Childhood disease prevalence increased by 10% (95% CI 8% to 11%, P<.0001) per year, with the largest increase in children 0 to 5 years. Prevalence increased across all diagnoses except amyotrophic lateral sclerosis and spinal muscular atrophy for adults and all diagnoses for children. Adult incidence decreased by 3% (95% CI -4% to -2%, P<.0001) but incidence remained stable in children. Death occurred in 34,336 (18.5%) adults; 21,236 (61.8%) of whom received palliative care. Death occurred in 1,009 (5.6%) children; 507 (50.2%) of whom received palliative care. Mortality decreased over time in adults (odds ratio (OR) 0.86, 95% CI 0.86-0.87, P<.0001) and children (OR 0.79, 95% CI 0.76-0.82, P<.0001). Use of palliative care over time increased for adults (OR 1.18, 95% CI 1.09 to 1.28, P <.0001) and children (OR 1.22, 95% CI 1.20 to 1.23, P <.0001). Conclusions: In both adults and children, NMD prevalence is rising and mortality rates are declining. In adults incidence is decreasing while in children it remains stable. This confirms on a population-based level the increased survival of children and adults with NMD.
Rose L; McKim D; Leasa D; Nonoyama M; Tandon A; Bai Y; Amin R; Katz S; Goldstein R; Gershon A
PLoS ONE
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/10.1371/journal.pone.0210574" target="_blank" rel="noreferrer noopener">10.1371/journal.pone.0210574</a>
Infant deaths from congenital anomalies: novel use of Child Death Overview Panel data
Female; Infant; Male; Humans; Retrospective Studies; Newborn; congenital anomaly; ethnicity; Infant Death; infant mortality; Cause of Death; Congenital Abnormalities/mortality; Consanguinity; Death Certificates; Disabled Children; England/epidemiology; Ethnic Groups/statistics & numerical data; Infant Mortality/ethnology; Maternal Age
OBJECTIVE: We aimed to assess Child Death Overview Panel (CDOP) data validity, and cause of death classification, by comparison with information from a local birth cohort study (Born in Bradford, BiB), and another cause of death coding system (causes of death and associated conditions-CODAC). We then aimed to use CDOP data to calculate ethnic-specific infant mortality rates (IMRs), and compare characteristics of infants who died of congenital anomalies (CA) with those who died from other causes (non-CA). DESIGN: Retrospective cohort study. SETTING: Bradford Metropolitan District. PATIENTS: All infant deaths, 2008 to 2013. MAIN OUTCOME MEASURES: Infant mortality rates from CA and non-CA causes. RESULTS: 315 infant deaths were included, 56 of whom were BiB recruits. Agreement between CDOP and BiB was moderate to perfect for all characteristics except ethnicity, which showed weak agreement (kappa=0.58). The same deaths (27/56) were classified as CA by CDOP and CODAC. IMRs (per 1000 live births, 2009-2013) were highest in Pakistani infants (all causes 9.8, CA cause 5.5) compared with white British (all causes 4.3, CA cause 1.3) and other infants (all causes 5.1, CA cause 1.4). In multivariate analysis, infants who died of CA cause were more likely to have been born at term (OR 3.18) and to consanguineous parents (OR 3.28) than infants who died of non-CA cause. CONCLUSIONS: Excess Pakistani mortality appears to be partly explained by an excess of deaths from CA, which in this population appears associated with a greater prevalence of consanguinity.
Firth C; Petherick E; Oddie SJ
Archives of Disease in Childhood
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).
<a href="http://doi.org/10.1136/archdischild-2017-314256" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2017-314256</a>
Pain in Nonverbal Children with Medical Complexity: A Two-Year Retrospective Study
Child; Female; Male; Adolescent; Humans; Retrospective Studies; Child Behavior; Intellectual Disability; Pain Measurement/mt [Methods]; Pain/di [Diagnosis]; Pain/pp [Physiopathology]; Parents/px [Psychology]; Longitudinal Studies; New England; Nursing Assessment; Surveys and Questionnaires
Quinn B L; Solodiuk J C; Morrill D; Mauskar S
The American journal of nursing
2018
<a href="http://doi.org/10.1097/01.NAJ.0000544137.55887.5a" target="_blank" rel="noreferrer noopener">10.1097/01.NAJ.0000544137.55887.5a</a>
Perceptions of discrimination among Mexican American families of seriously ill children
Middle Aged; Male; Young Adult; Child; Humans; Adult; Adolescent; Female; Child Preschool; Infant; Retrospective Studies; Critical Illness; California; Mexican Americans/px [Psychology]; Prejudice
This paper describes Mexican American family members' descriptions of perceived discrimination by pediatric health care providers (HCPs) and the families' reactions to the HCPs' discriminatory conduct. A retrospective, grounded theory design guided the overall study. Content analysis of interviews with 13 participants from 11 families who were recruited from two children's hospitals in Northern California resulted in numerous codes and revealed that participants perceived discrimination when they were treated differently from other, usually white, families. They believed they were treated differently because they were Mexican, because they were poor, because of language barriers, or because of their physical appearance.
Davies B; Larson J; Contro N; Cabrera AP
Journal of Palliative Medicine
2011
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.2010.0315" target="_blank" rel="noreferrer noopener">10.1089/jpm.2010.0315</a>
Disparities in location of death of adolescents and young adults with cancer: A longitudinal, population study in California
Neoplasms; Death; Male; Hospital Mortality; Young Adult; Humans; Adult; Adolescent; Female; Retrospective Studies; Attitude to Death; Hospital Mortality/td [Trends]; California; Hospices/sn [Statistics & Numerical Data]; Patient Preference/sn [Statistics & Numerical Data]; Nursing Homes/sn [Statistics & Numerical Data]; Residence Characteristics/sn [Statistics & Numerical Data]
BACKGROUND: Patients with a terminal illness should have access to their chosen location of death. Cancer is the leading cause of non-accidental death among adolescents and young adults (AYAs; those aged 15-39 years). Although surveys have suggested that a majority of these patients prefer a home death, to the authors' knowledge, little is known regarding their barriers to accessing their preferred location of death. As a first step, the authors sought to determine, across a large population, 20-year trends in the location of death among AYA patients with cancer. METHODS: Using the Vital Statistics Death Certificate Database of the California Office of Statewide Health Planning and Development, the authors performed a retrospective, population-based analysis of California patients with cancer aged 15 to 39 years who died between 1989 and 2011. Sociodemographic and clinical factors associated with hospital death were examined using multivariable logistic regression. RESULTS: Of 30,573 AYA oncology decedents, 57% died in a hospital, 33% died at home, and 10% died in other locations (eg, hospice facility or nursing facility). Between 1989 and 1994, hospital death rates decreased from 68.3% to 53.6% and at-home death rates increased from 16.8% to 35.5%. Between 1995 and 2011, these rates were stable. Those individuals who were more likely to die in a hospital were those aged <30 years, of minority race, of Hispanic ethnicity, who lived <=10 miles from a specialty center, and who had a diagnosis of leukemia or lymphoma. CONCLUSIONS: Overall, the majority of AYA cancer deaths occurred in a hospital, with a 5-year shift to more in-home deaths that abated after 1995. In-hospital deaths were more common among younger patients, patients of minority race/ethnicities, and those with a leukemia or lymphoma diagnosis. Further study is needed to determine whether these rates and disparities are consistent with patient preferences. Cancer 2017;123:4178-4184. � 2017 American Cancer Society.
Rajeshuni N; Johnston EE; Saynina O; Sanders LM; Chamberlain LJ
Cancer
2017
<a href="http://doi.org/%2010.1002/cncr.30860" target="_blank" rel="noreferrer noopener">10.1002/cncr.30860</a>