Racial Inequities in Palliative Referral for Children with High-Intensity Neurologic Impairment
Child; child; adult; article; cohort analysis; controlled study; female; human; major clinical study; male; retrospective study; chronic disease; Socioeconomic Factors; gestational age; Referral and Consultation; ethnicity; Only Child; patient referral; tertiary care center; morbidity; mortality; neurologic examination; multidisciplinary team; Hispanic; medicaid; racism; primary medical care; special situation for pharmacovigilance; racial disparity; economic inequality
Objective: To evaluate whether racial and socioeconomic inequities in pediatric palliative care utilization extend to children with high-intensity neurologic impairment (HI-NI), which is a chronic neurological diagnosis resulting in substantial functional morbidity and mortality. Study design: We conducted a retrospective study of patients with HI-NI who received primary care services at a tertiary care center from 2014 through 2019. HI-NI diagnoses that warranted a palliative care referral were identified by consensus of a multidisciplinary team. The outcome was referral to palliative care. The primary exposure was race, categorized as Black or non-Black to represent the impact of anti-Black racism. Additional exposures included ethnicity (Hispanic/non-Hispanic) and insurance status (Medicaid/non-Medicaid). Descriptive statistics, bivariate analyses, and multivariable logistic regression models were performed to assess associations between exposures and palliative care referral. Results: A total of 801 patients with HI-NI were included; 7.5% received a palliative referral. There were no differences in gestational age, sex, or ethnicity between patients who received a referral and those who did not. In multivariable analysis, adjusting for ethnicity, sex, gestational age, and presence of complex chronic conditions, Black children (aOR 0.47, 95% CI 0.26, 0.84) and children with Medicaid insurance (aOR 0.40, 95% CI 0.23, 0.70) each had significantly lower odds of palliative referral compared with their non-Black and non-Medicaid-insured peers, respectively. Conclusions: We identified inequities in pediatric palliative care referral among children with HI-NI by race and insurance status. Future work is needed to develop interventions, with families, aimed at promoting more equitable, antiracist systems of palliative care.
Jones MN; Simpson SL; Beck AF; Cortezzo DE; Thienprayoon R; Corley AMS; Thomson J
Journal of Pediatrics
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/10.1016/j.jpeds.2024.113930" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2024.113930</a>
Home-Based Pediatric Hospice and Palliative Care Provider Visits: Effects on Healthcare Utilization
Hospices; Palliative Care
Objective This hypothesis-generating study sought to assess the impact of home-based hospice and palliative care (HBHPC) provider home visits (HV) on healthcare utilization. Study design Retrospective review of individuals ages 1 month to 21 years receiving an in-person HBHPC provider (MD/DO or APN) home visit through two HBHPC programs in the Midwest from 1/1/2013 through 12/31/2018. Descriptive statistics were calculated for healthcare utilization variables. Paired t-test or Wilcoxon signed-rank test compared the changes in healthcare utilization the year prior to and year after initial provider home visits. Results The cohort included 195 individuals (49% female), with diagnoses comprised of 49% neurologic, 30% congenital chromosomal, 11% oncologic, 7% cardiac, and 3% other. After implementation of HBHPC services, these patients showed reductions in median [IQR] number of ICU days (before HV 12 [4, 37] after HV 0 [0, 8], p<0.001); inpatient admissions (before HV 1 [1, 3] after HV 1 [0, 2], p=0.005); and number of inpatient days (before HV 5 [1, 19] after HV 2 [0, 8], p=0.009). There was an increase in clinically relevant phone calls (CRPC) to the HBHPC team (before HV 1 [0, 4] vs after HV 4 [1, 7], p<0.001) and calls to the HBHPC team before emergency department visits (before HV 0 [0, 0] vs after HV 1 [1, 2], p<0.001). Conclusion HBHPC provider home visits were associated with decreased inpatient admissions, hospital days, and ICU days, and increased CRPC and phone calls prior to emergency department visit. These findings indicate that HBHPC HV may contribute to decreased inpatient utilization and increased utilization of the HBHPC team.
Smith SM; Grossoehme DH; Cicozi K; Hiltunen A; Roth C; Richner G; Kim SS; Tram NK; Friebert S
Journal of Pediatrics
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/10.1016/j.jpeds.2024.113929" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2024.113929</a>
Population-level analysis of appropriateness of end-of-life care for children with neurological conditions
Cohort; Indicators; Quality of Care
OBJECTIVE: To measure the appropriateness of end-of-life care for children who died with neurological conditions. STUDY DESIGN: Based on linked routinely collected databases, we conducted a population-level decedent retrospective cohort study of children with neurological conditions who died in Belgium between 2010 and 2017. We measured a set of 22 face-validated quality indicators. The set concerns 12 indicators of potentially appropriate end-of-life care (eg, specialized comfort medication, physician contact, continuous care) and 10 indicators of potentially inappropriate end-of-life care (eg, diagnostic tests, phlebotomy). We performed analysis of variance for predictors (age, sex, disease category, nationality, having siblings, year of death) for scales of appropriate and inappropriate care. RESULTS: Between 2010 and 2017, 139 children with neurological conditions died in Belgium. For potentially appropriate care, in the last 30 days 76% of children received clinical care, 55% had continuous care relationships, 17% had contact with a general physician, 8% of children received specialized comfort medication, and 14% received care from a palliative care team. For potentially inappropriate care, in the last 14 days 45% had blood drawn, and 27% were admitted to ICU. CONCLUSIONS: Our study found indications of appropriate as well as inappropriate end-of-life care for children who died with neurological conditions. These findings reveal a substantial margin for potential quality improvement, in regard to palliative care provision, multidisciplinary care, financial support, specialized comfort medication, clinical follow-up, general physician contact, diagnostics, and phlebotomy.
Piette V; Smets T; Deliens L; van Berlaer G; Beernaert K; Cohen J
Journal of Pediatrics
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/10.1016/j.jpeds.2022.10.037" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2022.10.037</a>
Mortality During Readmission Among Children in United States Children's Hospitals
children’s hospitals; complex chronic conditions; disparities; mortality; pediatric; readmissions; United States
OBJECTIVE: To identify demographic, clinical, and hospital factors associated with mortality on readmission within 180 days following an inpatient hospitalization. STUDY DESIGN: We conducted a retrospective cohort study including 33 US children's hospitals in the Pediatric Health Information System from January 2010-June 2020. Our primary outcome was death during readmission ≤180 days of an index hospitalization among children aged 0-18 years. Illness severity during the index hospitalization was defined according to the All Patient-Refined Diagnosis-Related Group categorized illness severity (i.e., minor, moderate, and major/extreme). We performed multivariable logistic regression analysis to identify factors during the index hospitalization associated with mortality during readmission. RESULTS: Among 2,677,111 children discharged, 12.6% (n=337,385) were readmitted within 180 days of the index hospitalization and 2,913 (0.8%) died during readmission. 26.2% of deaths among children who were readmitted and died occurred within 10 days after discharge from index hospitalizations. Factors independently associated with mortality during readmission included: multiple complex chronic conditions, index admissions lasting >7 days, moderate or severe/extreme illness during the index hospitalization, and public insurance. Children whose race was reported as Black had greater odds of mortality during readmission than children of other races. CONCLUSIONS: Among hospitalized children, several demographic and clinical factors present during index hospitalizations were associated with mortality during readmission. Greater odds of mortality during readmission among children whose race was reported as Black likely reflects disparities in social determinants of health and clinical care. Interventions to reduce mortality during readmission may target high-risk populations in the period immediately following discharge.
Rees CA; Neuman MI; Monuteaux MC; Michelson KA; Duggan CP
Journal of Pediatrics
2022
<a href="http://doi.org/10.1016/j.jpeds.2022.03.040" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2022.03.040</a>
Family Experiences Deciding For and Against Pediatric Home Ventilation
decision-making; children with medical complexity; parent perspective; home ventilation
Objective: To understand what considerations drive family decisions for, and against, pediatric home ventilation. Study design: Qualitative interviews with parents of children who faced a decision about home ventilation in the previous 5 years at 3 geographically dispersed institutions. Result(s): In total, 38 families (42 parents) were interviewed; 20 families opted for pediatric home ventilation, and 18 families opted against. Approximately one-quarter of children had isolated chronic lung disease; the remainder had medical complexity that was expected to remain static or decline. Parent perspectives about home ventilation generally reflected whether the child was early, or later, in their disease trajectory. Early on, parents often interpreted prognostic uncertainty as hope and saw home ventilation as a tool permitting time for improvement. For families of children later in their disease course, often already with home technology and home nursing, home ventilation held less possibility for meaningful improvement. Nearly all families experienced the decision as very emotionally distressing. Reflecting back, most families described feeling satisfied with whatever decision they made. Conclusion(s): The 2 principal groups of families in our cohort-those with children whose respiratory insufficiency might improve, and those with children facing chronic decline-warrant targeted counseling approaches about initiating home ventilation. The distressing nature of this decision should be anticipated and family supports reinforced. Copyright © 2020 Elsevier Inc.
Boss RD; Henderson CM; Raisanen JC; Jabre NA; Shipman K; Wilfond BS
Journal of Pediatrics
2021
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.jpeds.2020.10.014" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2020.10.014</a>
Development of a Stakeholder Driven Serious Illness Communication Program for Advance Care Planning in Children, Adolescents, and Young Adults with Serious Illness
conversations guides decision making intervention development life-limiting illness life-threatening illness parents pediatric palliative care qualitative research stakeholder engagement
Objectives: To develop a generalizable advance care planning (ACP) intervention for children, adolescents, and young adults with serious illness using a multistage, stakeholder-driven approach. Study design: We first convened an expert panel of multidisciplinary health care providers (HCPs), researchers, and parents to delineate key ACP intervention elements. We then adapted an existing adult guide for use in pediatrics and conducted focus groups and interviews with HCPs, parents, and seriously ill adolescents and young adults to contextualize perspectives on ACP communication and our Pediatric Serious Illness Communication Program (PediSICP). Using thematic analysis, we identified guide adaptations, preferred content, and barriers for Pedi-SICP implementation. Expert panelists then reviewed, amended and finalized intervention components. Result(s): Stakeholders (34 HCPs, 9 parents, and 7 seriously ill adolescents and young adults) participated in focus groups and interviews. Stakeholders validated and refined the guide and PediSICP intervention and identified barriers to PediSICP implementation, including the need for HCP training, competing demands, uncertainty regarding timing, and documentation of ACP discussions. Conclusion(s): The finalized PediSICP intervention includes a structured HCP and family ACP communication occasion supported by a 3-part communication tool and bolstered by focused HCP training. We also identified strategies to ameliorate implementation barriers. Future research will determine the feasibility of the PediSICP and whether it improves care alignment with patient and family goals. Copyright © 2020 Elsevier Inc.
DeCourcey DD; Partin L; Revette A; Bernacki R; Wolfe J
Journal of Pediatrics
2021
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.jpeds.2020.09.030" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2020.09.030</a>
Patterns of Hospice and Home-Based Palliative Care in Children: An Ohio Pediatric Palliative Care and End-of Life Network Study
life-limiting illness; home-based palliative care; pediatric hospice; Ohio Pediatric Palliative Care and End-of-Life Network; OPPEN; retrospective cohort study
Objective: To describe the demographic and clinical characteristics of a cohort of patients referred to pediatric hospice and home-based palliative care (HBPC) programs across Ohio in 2016. Study design: Retrospective cohort study of patients referred to hospice/HBPC from 3 pediatric palliative care programs in Ohio in 2016. Demographic and clinical data were extracted from the medical record and analyzed with descriptive statistics. Result(s): There were 209 patients referred: 49 (24%) to hospice and 160 (77%) to HBPC. The most common diagnoses were genetic/chromosomal syndromes (23%), neurologic or neurodegenerative conditions (23%), and cancer (21%). Durable medical equipment use was frequent (85%), with gastrostomy or jejunostomy tubes (22%) the most common. Most patients (64%) retained full-code resuscitation status. Fifty-seven patients (27%) died before July 1, 2018: 37 in hospice (18% of the overall cohort, 65% of decedents) and 20 in HBPC (10% of the overall cohort, 35% of decedents). Sixty-seven percent of hospice and 40% of HBPC patients died at home. Conclusion(s): Pediatric hospice and HBPC programs serve a diverse cohort of patients. Patients referred to pediatric HBPC programs commonly die and are likely to die at home despite not being enrolled in hospice care. The high proportion of decedent HBPC patients indicates that the notion of hospice vs palliative care may present a false dichotomy in many children with life-limiting conditions. Reimbursement models for HBPC should reflect the clinical similarity to hospice in the care of children with life-limiting illnesses. Copyright © 2020 Elsevier Inc.
Grossoehme D H; Humphrey L; Friebert S; Ding L; Yang G; Allmendinger-Goertz K; Fryda Z; Fosselman D; Thienprayoon R
Journal of Pediatrics
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpeds.2020.04.004" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2020.04.004</a>
Center, Gestational Age, and Race Impact End-of-Life Care Practices at Regional Neonatal Intensive Care Units
article; Black person; cause of death; central nervous system; child; cohort analysis; controlled study; do not resuscitate order; drug withdrawal; female; gestational age; human; infant; injury; life sustaining treatment; major clinical study; male; Neonatal Intensive Care Unit; newborn; newborn death; retrospective study; terminal care
Objective: To assess the impact of intercenter variation and patient factors on end-of-life care practices for infants who die in regional neonatal intensive care units (NICUs). Study design: We conducted a retrospective cohort analysis using the Children's Hospital Neonatal Database during 2010-2016. A total of 6299 nonsurviving infants cared for in 32 participating regional NICUs were included to examine intercenter variation and the effects of gestational age, race, and cause of death on 3 end-of-life care practices: do not attempt resuscitation orders (DNR), cardiopulmonary resuscitation within 6 hours of death (CPR), and withdrawal of life-sustaining therapies (WLST). Factors associated with these practices were used to develop a multivariable equation.
Fry J T; Matoba N; Datta A; DiGeronimo R; Coghill C H; Natarajan G; Brozanski B; Leuthner S R; Niehaus J Z; Schlegel A B; Shah A; Zaniletti I; Bartman T; Murthy K; Sullivan K M; Asselin J; Durand D; Dykes F; Evans J; Padula M; Pallotto E; Grover T; Piazza A; Reber K; Short B
Journal of Pediatrics
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpeds.2019.10.039" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2019.10.039</a>
Variation in Hospitalization Rates Following Emergency Department Visits in Children with Medical Complexity
children with medical complexity; emergency department; hospitalization
Objectives: To evaluate factors associated with admission from emergency department (ED) encounters for children with medical complexity (CMC) and to quantify the hospital admission rate as well as variation in adjusted hospital admission rates across EDs.Study Design: Retrospective study of 271 806 visits to 37 EDs in freestanding children's hospitals from January 1, 2014, to June 30, 2017, for patients of all ages with a complex chronic condition. Associations between patient demographic, clinical, and health services characteristics and the likelihood of hospital admission were identified using generalized linear models, which were then used to calculate adjusted hospital admission rates.Results: Hospital admission occurred with 25.7% of ED visits. Characteristics with the greatest aOR of hospitalization were ≥3 compared with 0 prior hospitalizations in 365 days (4.7; 95% CI, 4.5-4.9), ED arrival overnight compared with during workday 3.2 (95% CI, 3.1-3.3)], and ≥6 vs 0-1 chronic conditions (1.6; 95% CI, 1.5-1.6). Adjusted hospital admission rates varied significantly (P < .001) across EDs (21.1% [10th percentile]) and 30.0% [90th percentile]). Significant variation remained when excluding low-intensity ED visits, excluding hospitalizations requiring surgery and/or intensive care, or restricting the cohort to overnight ED arrival and to children with ≥3 prior hospitalizations.Conclusions: CMC are frequently admitted from the ED. Substantial variation in CMC hospital admission rates across EDs exists after case-mix adjustment.
Coller R J; Rodean J; Linares D E; Chung P J; Pulcini C; Hall M; Alpern E; Mosquera R; Casto E; Berry J G
Journal of Pediatrics
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpeds.2019.07.034" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2019.07.034</a>
Sleep-disordered breathing in children with achondroplasia
Pediatrics; death; unexpected; apnea; cervicomedullary compression; decompression; infants; obstruction; respiratory complications; breathing difficulties; achondroplasia; trajectory; characteristics; obstructive sleep apnea; central apnea
Objective: Our objective was to characterize sleep-disordered breathing in 88 children with achondroplasia aged 1 month to 12.6 years. Results: At the time of their initial polysomnography, five children had previously undergone tracheostomy, and seven children required supplemental oxygen. Initial polysomnography demonstrated a median obstructive apnea index of 0 (range, 0 to 19.2 apneas/hr). The median number of central apneas with desaturation per study was 0.5 (0 to 49), the median oxygen saturation nadir was 91% (50% to 99%), and the median peak end-tidal pCO(2) was 47 mm Hg (36 to 87 mm Hg). Forty-two children (47.7%) had abnormal initial study results, usually caused by hypoxemia. Two children with severe obstructive sleep apnea eventually required continuous positive airway pressure therapy, and three additional children required tracheostomies. Conclusions: (1) Children with achondroplasia often have sleep-related respiratory disturbances, primarily hypoxemia. (2) The majority do not have significant obstructive or central apnea; however, a substantial minority are severely affected. (3) Tonsillectomy and adenoidectomy decreases the degree of upper airway obstruction in most but not all children with achondroplasia and obstructive sleep apnea. (4) Restrictive lung disease can present at a young age in children with achondroplasia.
Mogayzel P J; Carroll J L; Loughlin G M; Hurko O; Francomano C A; Marcus C L
Journal of Pediatrics
1998
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/s0022-3476(98)70358-0" target="_blank" rel="noreferrer noopener">10.1016/s0022-3476(98)70358-0</a>
Oropharyngeal dysphagia and aspiration in patients with ataxia-telangiectasia
children; Pediatrics; feeding difficulties; ataxia telangectasia; trajectory; characteristics; dysphagia aspiration; low weight
Objectives: To determine whether patients with ataxia-telangiectasia exhibit oropharyngeal dysphagia with concomitant aspiration and to examine the relationships among swallowing function, age, and nutritional status. Study design: Seventy patients (mean age, 10.7 years; range,: 1.8 to 30 years) had feeding/swallowing and nutritional evaluations. Fifty-one patients, in whom there were concerns about swallowing safety, were examined with a standardized videofluoroscopic swallow study. Results: Fourteen of the 51 patients (27%) with histories suggestive of dysphagia demonstrated aspiration. Of these, silent aspiration (aspiration without a cough) occurred in 10 (71%) patients. Aspirators were significantly older than non-aspirators (mean age, 16.9 vs 10.8 years; P = .002). Advancing age was the strongest factor associated with aspiration during continuous drinking (P = .01). In patients with ataxia-telangiectasia, weight and weight/height were abnormally low at all ages and most compromised in older patients. Patients who aspirated had significantly lower mean weighs (P < .002) and weight/height z scores (P < .001) than did patients who did not aspirate. Conclusions: Oropharyngeal dysphagia is common and appears to be progressive in patients with ataxia-telangiectasia. Older patients also have a higher incidence of poorer nutritional status. The relationship between dysphagia and nutritional status deserves further investigation.
Lefton-Greif M A; Crawford T O; Winkelstein J A; Loughlin G M; Koerner C B; Zaburak M; Lederman H M
Journal of Pediatrics
2000
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<a href="http://doi.org/10.1016/s0022-3476(00)70106-5" target="_blank" rel="noreferrer noopener">10.1016/s0022-3476(00)70106-5</a>
Behavior management of feeding disturbances in urea cycle and organic acid disorders
Pediatrics; feeding difficulties; argininosuccinate kyase deficiency; MCM deficiency; ornithine carbamoyltransferase deficiency disease; propionic acidemia; psychological intervention; positive reinforcement; guidance techniques
Hyman S L; Porter C A; Page T J; Iwata B A; Kissel R; Batshaw M L
Journal of Pediatrics
1987
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/s0022-3476(87)80121-x" target="_blank" rel="noreferrer noopener">10.1016/s0022-3476(87)80121-x</a>
Black, White, and Hispanic Children's Health and Function 2-13 Months After Sibling Intensive Care Unit Death
child death; sibling bereavement; child bereavement; sibling death
OBJECTIVE: To describe children's anxiety, depression, behaviors, and school performance at 2-13 months after sibling neonatal/pediatric intensive care unit (NICU/PICU) or emergency department (ED) death and compare these outcomes by child age, sex, race/ethnicity, whether the child saw their sibling in the NICU/PICU/ED, and attended the sibling's funeral. STUDY DESIGN: Children in 71 families were recruited for this longitudinal study from 4 children's hospitals and 14 other Florida hospitals. Children rated anxiety (Spence Children's Anxiety Scale) and depression (Children's Depression Inventory); parents rated child behaviors (Child Behavior Checklist) and reported school performance (detentions, suspensions, requested parent-teacher meetings) at 2, 4, 6, and 13 months post-sibling death. Analyses included repeated measures-ANOVA, t-tests, and 1-way ANOVA. RESULTS: In total, 132 children and 96 parents participated. More children were female (58%), black (50%), and school-age (72%). Of the children, 43% had elevated anxiety and 6% had elevated depression over 13 months post-sibling death. Child-rated anxiety was higher for girls and black vs white children. Child-rated anxiety and depression were lower if they saw their sibling in the NICU/PICU/ED before and/or after the death, and/or attended the funeral. Teens were more withdrawn than school-age children at all time points. Children who did not see their deceased sibling in the NICU/PICU/ED after death had more requests for parent-teacher conferences. CONCLUSIONS: Children's anxiety was more common than depression, especially in girls and black children. Children who saw their siblings in the NICU/PICU/ED before/after death and/or attended funeral services had lower anxiety and depression over the first 13 months after sibling death.
Youngblut J M; Brooten D; Del-Moral T; Cantwell G P; Totapally B; Yoo C
Journal of Pediatrics
2019
<a href="http://doi.org/10.1016/j.jpeds.2019.03.017" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2019.03.017</a>
Caregiver Perceptions about their Decision to Pursue Tracheostomy for Children with Medical Complexity
Child; Adolescent; Adult; Child Preschool; Female; Humans; Infant; Male; Middle Aged; Qualitative Research; Decision Making; Quality of Life; Young Adult; pediatrics; Death; Parents/psychology; Disabled Children; Caregivers/psychology; Home Care Services; decision-making; life-sustaining treatments; outcomes; Tracheostomy; Grandparents/psychology
OBJECTIVE: To describe the perceptions of caregivers of children with medical complexity (CMC) about their decision to pursue tracheostomy for their children, in particular the satisfaction with their decision. STUDY DESIGN: In this qualitative study conducted in western North Carolina between 2013 and 2014, we interviewed 56 caregivers of 41 CMC who had received tracheostomies in the past 5 years. Three of the CMC were deceased at the time of the interview; 8 were decannulated. In-depth interviews (35 English, 6 Spanish) were conducted, audio-recorded, and transcribed verbatim. We used ATLAS.ti software to manage data and identified themes related to caregiver perceptions about tracheostomy decision. RESULTS: We found that caregivers often chose tracheostomy because extending the lives of their children and being able to care for them at home were important. Caregivers reported the many benefits of tracheostomy including improvement in respiratory symptoms, physical and developmental health, quality of life, and means to provide medical care quickly when needed. There were negative effects of tracheostomy such as mucous plugs, excessive secretions, accidental decannulation necessitating emergency tracheostomy tube change, and the increased infection risk. Providing medical care for CMC with tracheostomy at home was difficult, but improved over time. Caregivers were generally satisfied with their decision to pursue tracheostomy for their CMC. CONCLUSIONS: Decisional satisfaction with tracheostomy for CMC is high. In counseling caregivers about tracheostomy, clinicians should present both the benefits and risks. Future studies should quantify the outcomes described in this study.
Nageswaran S; Golden SL; Gower WA; King NMP
Journal of Pediatrics
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpeds.2018.07.045" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2018.07.045</a>
Assessing Ethics Knowledge: Development of a Test of Ethics Knowledge in Neonatology
Decision Making; Male; Surveys and Questionnaires; Humans; Adult; Female; medical education; Internship and Residency; medical ethics; assessment; milestones; professionalism; Ethics Medical/education; Neonatology/education; Psychometrics/education
OBJECTIVE: To develop and validate the Test of Ethics Knowledge in Neonatology (TEK-Neo) with good internal consistency reliability, item performance, and construct validity that reliably assesses interprofessional staff and trainee knowledge of neonatal ethics. STUDY DESIGN: We adapted a published test of ethics knowledge for use in neonatology. The novel instrument had 46 true/false questions distributed among 7 domains of neonatal ethics: ethical principles, professionalism, genetic testing, beginning of life/viability, end of life, informed permission/decision making, and research ethics. Content and correct answers were derived from published statements and guidelines. We administered the voluntary, anonymous test via e-mailed link to 103 participants, including medical students, neonatology fellows, neonatologists, neonatology nurses, and pediatric ethicists. After item reduction, we examined psychometric properties of the resulting 36-item test and assessed overall sample performance. RESULTS: The overall response rate was 27% (103 of 380). The test demonstrated good internal reliability (Cronbach alpha = 0.66), with a mean score of 28.5 +/- 3.4 out of the maximum 36. Participants with formal ethics training performed better than those without (30.3 +/- 2.9 vs 28.1 +/- 3.5; P = .01). Performance improved significantly with higher levels of medical/ethical training among the 5 groups: medical students, 25.9 +/- 3.7; neonatal nurses/practitioners, 27.7 +/- 2.7; neonatologists, 28.8 +/- 3.7; neonatology fellows, 29.8 +/- 2.9; and clinical ethicists, 33.0 +/- 1.9 (P < .0001). CONCLUSIONS: The TEK-Neo reliably assesses knowledge of neonatal ethics among interprofessional staff and trainees in neonatology. This novel tool discriminates between learners with different levels of expertise and can be used interprofessionally to assess individual and group performance, track milestone progression, and address curricular gaps in neonatal ethics.
Cummings CL; Geis GM; Feldman HA; Berson ER; Kesselheim J C
Journal of Pediatrics
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpeds.2018.04.004" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2018.04.004</a>
Research Priorities in Pediatric Palliative Care
Palliative Care; Parents/px [Psychology]; Humans; United States; Pediatrics; Delphi Technique; Attitude of Health Personnel; Research
OBJECTIVE: To synthesize the perspectives of a broad range of pediatric palliative care (PPC) clinicians and parents, to formulate a consensus on prioritization of the PPC research agenda. STUDY DESIGN: A 4-round modified Delphi online survey was administered to PPC experts and to parents of children who had received PPC. In round 1, research priorities were generated spontaneously. Rounds 2 and 3 then served as convergence rounds to synthesize priorities. In round 4, participants were asked to rank the research priorities that had reached at least 80% consensus. RESULTS: A total of 3093 concepts were spontaneously generated by 170 experts and 72 parents in round 1 (65.8% response rate [RR]). These concepts were thematically organized into 78 priorities and recirculated for round 2 ratings (n = 130; 53.7% RR). Round 3 achieved response stability, with 31 consensus priorities oscillating within 10% of the mode (n = 98; 75.4% RR). Round 4 resulted in consensus recognition of 20 research priorities, which were thematically grouped as decision making, care coordination, symptom management, quality improvement, and education. CONCLUSIONS: This modified Delphi survey used professional and parental consensus to identify preeminent PPC research priorities. Attentiveness to these priorities may help direct resources and efforts toward building a formative evidence base. Investigating PPC implementation approaches and outcomes can help improve the quality of care services for children and families.
Baker JN; Levine D R; Hinds PS; Weaver MS; Cunningham MJ; Johnson L; Anghelescu D; Mandrell B; Gibson DV; Jones B; Wolfe J; Feudtner C; Friebert S; Carter B; Kane J R
Journal of Pediatrics
2015
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.jpeds.2015.05.002" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2015.05.002</a>
Resilience Rather than Medical Factors: How Parents Predict Quality of Life of Their Sick Newborn
OBJECTIVE: To assess the influence of resiliency and stress on parental perspectives of the future quality of life (QOL) of neonatal intensive care unit (NICU) newborns at high risk of neurodevelopmental disability. STUDY DESIGN: We conducted a prospective multicenter questionnaire study. Perspectives from parents of newborns at high risk of disability as per neonatal follow-up criteria were compared with a low-risk group consisting of parents of all other NICU newborns. Parental anxiety and resiliency, measured using Brief Symptom Inventory and Sense of Coherence scales, respectively, were associated with QOL projections. RESULTS: Parents returned 129 (81%) questionnaires. Parents considering their newborn as currently sicker were more stressed (P = .011) and worried about future physical (P < .001) and mental (P < .001) health, QOL (P < .001), coping (P = .019), and financial (P < .001) and emotional (P = .002) impact on the family. Ooverall, there was no difference between parents of high-risk and low-risk newborns on QOL projections. Almost all parents projected a good future QOL. Less resilient parents projected more pain (P = .04), more financial (P = .019), and emotional (P = .031) impact on their family, and were 10 times more likely to predict that their newborn would remain chronically ill. CONCLUSIONS: Parental projection of future QOL of NICU newborns is not associated with risk of disability. Most parents predict overall a good future QOL and focus more on familial impact. The Sense of Coherence scale may be used in clinical settings to identify less resilient parents.
Ferrand A; Gorgos A; Ali N; Payot A
Journal of Pediatrics
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpeds.2018.05.025" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2018.05.025</a>
Well-Child Visits of Medicaid-Insured Children with Medical Complexity
OBJECTIVE: Well-child visits (WCVs) help optimize children's health. We measured annual WCVs for children with medical complexity (CMC) and correlated WCVs with hospitalizations. STUDY DESIGN: This was a retrospective analysis of 93 121 CMC aged 1-18 years continuously enrolled in 10 state Medicaid programs in the Truven MarketScan Database between 2010 and 2014. CMC had a complex chronic condition or 3 or more chronic conditions of any complexity identified from International Classification of Diseases, Ninth Revision codes, and the use of 1 or more chronic medications. We measured the number of years with 1 or more WCVs. The χ2 test and logistic regression were used to assess the relationships of WCV-years with the children's characteristics and hospitalization. RESULTS: Over 5 years, 13.4% of CMC had 0 WCVs; 17.3% had WCVs in 1 year, 40.8% had WCVs in 2-3 years, and 28.5% had WCVs in 4-5 years. Fewer children received WCVs in 4-5 years when enrolled in Medicaid fee-for-service compared with managed care (20.9% vs 31.5%; P < .001) and when enrolled due to a disability compared with another reason (18.2% vs 32.2%; P < .001). The percentage of CMC hospitalized decreased as the number of years receiving WCV increased (21.5% at 0 years vs 16.9% at 5 years; P < .001). The adjusted odds of hospitalization were higher in CMC with WCVs in 0-4 years compared with CMC with WCVs in all 5 years (OR range across years, 1.1 [95% CI, 1.0-1.2] to 1.3 [95% CI, 1.3-1.4]). CONCLUSIONS: Most Medicaid-insured CMC do not receive annual WCVs consistently over time. Children with fewer annual WCVs have a higher likelihood of hospitalization. Further investigation is needed to improve the use of WCVs in CMC.
Shumskiy I; Richardson T; Brar S; Hall M; Cox J; Crofton C; Peltz A; Samuels-Kalow M; Alpern ER; Neuman Mark I; Berry Jay G
Journal of Pediatrics
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpeds.2018.04.003" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2018.04.003</a>
Worth a Try? Describing the Experiences of Families during the Course of Care in the Neonatal Intensive Care Unit When the Prognosis is Poor
prognosis; Infant; Intensive Care Units; Medical Futility; Neonatal; Newborn; Parents; Prognosis; ethics; moral distress; prematurity; gray zone; Nicu; parent experiences; poor prognosis
OBJECTIVE: To determine how parents of infants in the neonatal intensive care unit with a poor or uncertain prognosis view their experience, and whether they view their choices as "worth it," regardless of outcome. STUDY DESIGN: Parents of eligible neonates at 2 institutions underwent audiotaped, semistructured interviews while their infants were still in the hospital and then again 6 months to 1 year after discharge or death. Interviews were transcribed and data were analyzed using thematic analysis. Two authors independently reviewed and coded each interview and discrepancies were resolved by consensus. RESULTS: Twenty-six families were interviewed in the initial group and 17 families were interviewed in the follow-up group. The most common themes identified included realism about death (24 families), appreciation for the infant's care team (23 families), and optimism and hope (22 families). Overall themes were very similar across both centers, and among parents of infants who died and those who survived. Themes of regret, futility, distrust of care team, and infant pain were brought up infrequently or not at all. CONCLUSIONS: No family believed that the care being provided to their infant was futile; rather, parents were grateful for the care provided to their infant, regardless of outcome. Even in the case of a poor prognosis or the death of an infant, families in our study viewed their infant's stay in the neonatal intensive care unit favorably.
Arnolds M; Xu L; Hughes P; McCoy J; Meadow W
Journal of Pediatrics
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpeds.2017.12.050" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2017.12.050</a>
Benefits of care coordination for children with complex disease: a pilot medical home project in a resident teaching clinic
Cohen 2006 BMC HSR Refs
2010
Klitzner TS; Rabbitt LA; Chang RK
Journal Of Pediatrics
2010
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/j.jpeds.2009.12.012" target="_blank" rel="noreferrer">10.1016/j.jpeds.2009.12.012</a>
Candles in the snow: ritual and memory for siblings of infants who died in the intensive care nursery.
AIM; IM; sibling bereavement
CONCLUSIONS: Although death in the NICU often has a brief course, consequences for survivor siblings can be life-long. Siblings born both before and after the death of an infant may be at risk and in need of psychological support. Family rituals and photos are important vehicles of communication, grieving, and memory for siblings and parents alike. Clinicians should allow siblings to be active participants in the infant's brief life and death.
2009-06
Fanos JH; Little GA; Edwards WH
Journal Of Pediatrics
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).
Journal Article
<a href="http://doi.org/10.1016/j.jpeds.2008.11.053" target="_blank" rel="noreferrer">10.1016/j.jpeds.2008.11.053</a>
Continuous intravenous infusion of morphine sulfate for control of severe pain in children with terminal malignancy
Child; Palliative Care; Pain; Terminal Care; Pain; Morphine; Palliative treatment; Infusions; Injections; Intravenous; Parenteral; Intractable
1980
Miser AW; Miser JS; Clark BS
Journal Of Pediatrics
1980
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/s0022-3476(80)80585-3" target="_blank" rel="noreferrer">10.1016/s0022-3476(80)80585-3</a>
Control of severe pain in children with terminal malignancy
Child; Female; Male; Preschool; Non-U.S. Gov't; infant; retrospective studies; Pain/drug therapy; Infusions; Human; Parenteral; Support; Adolescence; Terminal Care; Neoplasms/physiopathology; Palliative Care/methods; Analgesia/methods; Morphine/administration & dosage/therapeutic use
OBJECTIVE: To identify the characteristics of the subset of children with malignancy in whom massive opioid infusions are needed during the terminal phase. DESIGN: Retrospective review of the records of the 199 patients who died of malignancy after treatment at Children's Hospital, Boston, from March 1989 to July 1993, identifying characteristics of patients who required massive opioid infusions (operationally defined as infusion of > 3 mg/kg per hour of morphine dose equivalent) during the terminal phase. RESULTS: Twelve patients (6%) required massive opioid infusions, and eight of these patients required extraordinary measures (epidural or subarachnoid infusion and/or sedation) to achieve adequate analgesia. The duration of epidural or subarachnoid infusions in three patients ranged from 3 to 9 days, and minimal complications occurred. The duration of sedation ranged from 1 to 15 days. Maximal intravenous opioid dosing ranged from 3.8 to 518 mg/kg per hour of morphine equivalent. The maximal infusion rate (exceeding all previous published reports) occurred in an infant with an isolated metastasis in the periaqueductal gray matter, a brain-stem site linked to mediating analgesia and defense reactions. The need for massive opioid dosing in 11 of 12 patients was associated with tumor spread to the spinal nerve roots, nerve plexus, large peripheral nerve, or spinal cord compression. CONCLUSIONS: Standard dosing of opioids adequately treats most cancer pain in children; however, a significant group requires more extensive management. These problems occur more commonly among patients with solid tumors metastatic to spine and major nerves.
1995
Collins J J; Grier HE; Kinney HC; Berde CB
Journal Of Pediatrics
1995
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/s0022-3476(95)70370-5" target="_blank" rel="noreferrer">10.1016/s0022-3476(95)70370-5</a>
Massive opioid requirements in children with disseminated central nervous system disease
Child; Female; Pain; Preschool; Dose-Response Relationship; Drug; Receptors; Human; Case Report; Palliative Care; Drug Resistance; Terminal Care; Central Nervous System Neoplasms/physiopathology; Intractable/drug therapy; Morphine/administration & dosage; Opioid/drug effects/physiology; Rhabdoid Tumor/physiopathology
1996
Jones PD; Wilkinson IA
Journal Of Pediatrics
1996
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/s0022-3476(96)70348-7" target="_blank" rel="noreferrer">10.1016/s0022-3476(96)70348-7</a>
Population pharmacokinetics of oral morphine and its glucuronides in children receiving morphine as immediate-release liquid or sustained-release tablets for cancer pain
Child; Analgesics; Age Factors; Linear Models; Case-Control Studies; adolescent; Preschool; Non-U.S. Gov't; infant; Comparative Study; Nonparametric; Statistics; Dose-Response Relationship; Drug; Delayed-Action Preparations; Human; Support; Neoplasms/complications; Morphine Derivatives/administration & dosage/blood/pharmacokinetics; Morphine/administration & dosage/blood/pharmacokinetics; Opioid/administration & dosage/blood/pharmacokinetics; Pain/drug therapy/etiology
OBJECTIVES: (1) To determine the pharmacokinetics of morphine, morphine-6-glucuronide (M6G), and morphine-3-glucuronide (M3G) in children with cancer receiving morphine as immediate-release morphine liquid or sustained-release tablets. (2) To determine differences with age within the group and from adults. (3) To explore relationships between plasma concentration and pain measurements. STUDY DESIGN: Blood samples were collected and plasma analyzed by high-performance liquid chromatography with electrochemical and fluorescence detection. Population pharmacokinetic parameters were derived with the program P-PHARM. RESULTS: Forty children with a median age of 11.4 years (range 1.7 to 18.7 years) received a median dose of 1.4 mg/kg/d (range 0.4 to 24.6 mg/kg/d). A median of 4 blood samples per child was collected. Plasma clearance of morphine was 23.1 mL/min per kg body weight. The volume of distribution was 5.2 L/kg. Molar ratios of M3G/morphine, M6G/morphine, and M3G/M6G were 21.1, 4.7, and 4.2, respectively. Children 12 ng/mL in children with cancer pain unrelieved by mild to moderate strength analgesia.
1999
Hunt A; Joel S; Dick G; Goldman A
Journal Of Pediatrics
1999
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Journal Article
Comparison of morphine and methadone for prevention of postoperative pain in 3- to 7-year-old children
Child; Female; Male; Pain; Pain Measurement; Prospective Studies; Analysis of Variance; Double-Blind Method; Preschool; Non-U.S. Gov't; Comparative Study; Drug Evaluation; Human; Support; Postoperative/prevention & control; algorithms; Intraoperative Care; Methadone/adverse effects/pharmacokinetics/therapeutic use; Morphine/adverse effects/therapeutic use
A randomized, double-blind, prospective study was performed to determine the effects of perioperative administration of morphine or methadone on postoperative analgesic requirements and pain scores in 35 children aged 3 to 7 years undergoing major surgery. After a standardized induction of anesthesia, methadone or morphine, 0.2 mg/kg, was blindly administered, and supplemental doses were titrated to achieve comfort in the recovery room. Pain was assessed during the next 36 hours with a combination of validated behavioral and self-report measures. Patients in the methadone group required fewer supplemental opioid analgesic drugs during the next 36 hours, and reported lower pain scores. No patient had prolonged emergence from anesthesia, and no patient required naloxone or postoperative ventilatory assistance. No major adverse events occurred. We conclude that perioperative intravenous administration of methadone is an effective, inexpensive, and technologically simple means for providing prolonged analgesia for children after surgery.
1991
Berde CB; Beyer JE; Bournaki MC; Levin CR; Sethna NF
Journal Of Pediatrics
1991
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Journal Article
Prognosis for survival and improvement in function in children with severe developmental disabilities
Child; infant; Survival Rate; Cohort Studies; Prognosis; Follow-Up Studies; Severity of Illness Index; Preschool; P.H.S.; U.S. Gov't; infant; Newborn; Human; Age Distribution; Support; California/epidemiology; Developmental Disabilities/mortality
OBJECTIVE: To derive prognostic data for survival and clinical improvement in children with severe developmental disabilities. STUDY DESIGN: A 13-year follow-up study of several cohorts of children initially evaluated before their first birthday. The outcomes studied were survival and improvement in condition. Methods were used to overcome limitations in previously published work on the same California data base. Of the 11,912 children who received services from the California Department of Developmental Services between January 1980 and December 1993, we focused on three cohorts defined according to mobility and need for tube feeding. RESULTS: Children who were tube fed and unable to lift their heads by ages 3 to 12 months were at high risk for early death, with a median remaining life expectancy of 3.2 years. Of those who survived an additional 2 years, the condition of about one third improved. A substantial majority of those who either showed improvement or died had done so by that age. CONCLUSION: By age 5 years, the prognoses for survival and improvement have to a large extent been clarified. For children who survive to age 5 years, even those in the lowest functioning cohort have a 60% chance of surviving an additional 5 years. Detailing the probabilities of various outcomes at various ages should be useful to parents, pediatricians, and others concerned with children with developmental disabilities.
1997
Strauss D; Ashwal S; Shavelle R; Eyman RK
Journal Of Pediatrics
1997
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Journal Article
Characteristics of hospitalizations for patients who use a structured clinical care program for children with medical complexity
Cohen 2006 BMC HSR Refs
Berry JG; Agrawal R; Kuo DZ; Cohen E; Risko W; Hall M; Casey P; Gordon J; Srivastava R
Journal Of 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).
Journal Article
<a href="http://doi.org/10.1016/j.jpeds.2011.02.002" target="_blank" rel="noreferrer">10.1016/j.jpeds.2011.02.002</a>
Neurodevelopmental Outcomes of Infants Born at <29 Weeks of Gestation Admitted to Canadian Neonatal Intensive Care Units Based on Location of Birth
cerebral palsy; inborn; neurodevelopmental impairment; neurodevelopmental outcomes; outborn; Perinatal Care; preterm birth; tertiary care
OBJECTIVE: To compare mortality and neurodevelopmental outcomes of outborn and inborn preterm infants born at <29 weeks of gestation admitted to Canadian neonatal intensive care units (NICUs). STUDY DESIGN: Data were obtained from the Canadian Neonatal Network and Canadian Neonatal Follow-up Network databases for infants born at <29 weeks of gestation admitted to NICUs from April 2009 to September 2011. Rates of death, severe neurodevelopmental impairment (NDI), and overall NDI were compared between outborn and inborn infants at 18-21 months of age, corrected for prematurity. RESULTS: Of 2951 eligible infants, 473 (16%) were outborn. Mean birth weight (940 +/- 278 g vs 897 + 237 g), rates of treatment with antenatal steroids (53.9% vs 92.9%), birth weight small for gestational age (5.3% vs 9.4%), and maternal college education (43.7% vs 53.9%) differed between outborn and inborn infants, respectively (all P values <.01). The median Score for Neonatal Acute Physiology-II (P = .01) and Apgar score at 5 minutes (P < .01) were higher in inborn infants. Severe brain injury was more common among outborn infants (25.3% vs 14.7%, P < .01). Outborn infants had higher odds of death or severe NDI (aOR 1.7, 95% CI 1.3-2.2), death or overall NDI (aOR 1.6, 95% CI 1.2-2.2), death (aOR 2.1, 95% CI 1.5-3.0), and cerebral palsy (aOR 1.9, 95% CI 1.1-3.3). CONCLUSIONS: The composite outcomes of death or neurodevelopmental impairment were significantly higher in outborn compared with inborn infants admitted to Canadian NICUs. Adverse outcomes were mainly attributed to increased mortality and cerebral palsy in outborn neonates.
Amer R; Moddemann D; Seshia M; Alvaro R; Synnes A; Lee KS; Lee SK; Shah PS
Journal Of Pediatrics
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpeds.2017.11.038" target="_blank" rel="noreferrer">10.1016/j.jpeds.2017.11.038</a>
Use Of Adult-trained Medical Subspecialists By Children Seeking Medical Subspecialty Care.
Barriers To care; Consultation; Geographic Access; Pediatrics; Referral; Specialty; Subspecialty; Travel Time
OBJECTIVES:
To quantify the use of adult-trained medical subspecialists by children and to determine the association between geographic access to pediatric subspecialty care and the use of adult-trained subspecialists. Children with limited access to pediatric subspecialty care may seek care from adult-trained subspecialists, but data on this practice are limited.
STUDY DESIGN:
We identified children aged <16 years in 2007-2012 Pennsylvania Medicaid claims. We categorized outpatient visits to 9 selected medical subspecialties as either pediatric or adult-trained subspecialty visits. We used multinomial logistic regression to examine the adjusted association between travel times to pediatric referral centers and use of pediatric vs adult-trained medical subspecialists for children with and without complex chronic conditions (CCCs).
RESULTS:
Among 1.1 million children, 8% visited the examined medical subspecialists, with 10% of these children using adult-trained medical subspecialists. Compared with children with a ≤30-minute travel time to a pediatric referral center, children with a >90-minute travel time were more likely to use adult-trained subspecialists (without CCCs: relative risk ratio [RRR], 1.94, 95% CI, 1.79-2.11; with CCCs: RRR, 2.33; 95% CI, 2.10-2.59) and less likely to use pediatric subspecialists (without CCCs: RRR, 0.66; 95% CI, 0.63-0.68; with CCCs: RRR, 0.76, 95% CI, 0.73-0.79).
CONCLUSION:
Among medical subspecialty fields with pediatric and adult-trained subspecialists, adult-trained subspecialists provided 10% of care to children overall and 18% of care to children living >90 minutes from pediatric referral centers. Future studies should examine consequences of adult-trained medical subspecialist use on pediatric health outcomes and identify strategies to increase access to pediatric subspecialists.
Ray KN; Kahn JM; Miller E; Mehrotra A
Journal Of Pediatrics
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: 10.1016/j.jpeds.2016.05.073
Parents’ Experiences And Wishes At End Of Life In Children With Spinal Muscular Atrophy Types I And Ii.
Nationwide; Death; Health; Siblings; Palliative Care; Pediatrics
Bereavement; End-of-life Care; Location Of Death; Neuromuscular Disorders; Palliative Care; Spinal Muscular Atrophy
OBJECTIVE:
To explore experiences and wishes of bereaved parents concerning end-of-life care for their child with severe spinal muscular atrophy.
STUDY DESIGN:
A follow-up survey was conducted in 2013 on parents of deceased Swedish children who were born between 2000 and 2010 and later diagnosed with spinal muscular atrophy type I or II (n = 48). The questions used in this study covered location of death (LoD), support from health care staff, and parents' wishes and concerns about their child's end-of-life care.
RESULTS:
One-half of those who had wishes about LoD (16/32) wanted their child to die at home, rather than at the hospital. All of those who wanted the child to die at the hospital had their wishes fulfilled. Among those who wanted the child to die at home, 10 of 16 got their wish. Among parents who talked with a physician about how they wanted their child to pass away (n = 26), all but 2 had their wishes fulfilled. Thirty-six parents (75%) reported that their child had siblings: 12 reported that the sibling was too young for professional psychological support, and only 4 of the remaining 24 siblings received such support after the death of their brother or sister.
CONCLUSIONS:
Parents' communication with the physician about their wishes and concerns regarding their child's end-of-life care and preferred LoD contributed to their wishes being fulfilled. The wish of hospital death was fulfilled more often than the wish of home deaths. A vast majority of siblings did not receive psychological support after death of their brother or sister.
Lovgren M; Sejersen T; Kreicbergs U
Journal Of Pediatrics
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).