Pentz R.D.,Winship Cancer Institute |
Alderfer M.A.,Children's Hospital of Philadelphia |
Pelletier W.,Alberta Childrens Hospital |
Stegenga K.,Childrens Mercy Hospital |
And 5 more authors.
Pediatrics | Year: 2014
BACKGROUND AND OBJECTIVES: In 2010, the Bioethics Committee of the American Academy of Pediatrics issued recommendations that pediatric hematopoietic stem cell donors should have an independent advocate. Formulating appropriate guidelines is hindered by the lack of prospective empirical evidence from families about the experience of siblings during typing and donation. Our aim was to provide these data. METHODS: Families with a child scheduled to undergo hematopoietic stem cell transplant were recruited. All family members, including children aged 9 to 22 years, were eligible. Qualitative interviews were conducted within 3 time periods: pretransplant, 6 to 8, and 9 to 11 months posttransplant. Quantitative scales assessing decision satisfaction and regret were administered at time 2. RESULTS: Thirty-three families were interviewed. Of the 119 family members, 76% perceived there was no choice in the decision to HLA-type siblings; 77% perceived no choice in sibling donation; 86% had no concerns about typing other than needle sticks; and 64% had no concerns about donation. Common concerns raised were dislike of needle sticks (19%), stress before typing results (14%), and fear of donation (15%). Posttransplantation, 33% of donors wished they had been given more information; 56% of donors stated they benefited from donation. Only 1 donor expressed regret posttransplant. CONCLUSIONS: Most family members did not view sibling typing and donation as a choice, were positive about the experience, and did not express regrets. We recommend education for all siblings before typing, comprehensive education for the donor by a health care provider pretransplant, and systematic donor follow-up after transplantation. Copyright © 2014 by the American Academy of Pediatrics.
PubMed | University of Arkansas for Medical Sciences, University of Washington, University of Chicago, Kaiser Permanente and 5 more.
Type: Journal Article | Journal: Pediatrics | Year: 2016
To determine if multiple doses of erythropoietin (Epo) administered with hypothermia improve neuroradiographic and short-term outcomes of newborns with hypoxic-ischemic encephalopathy.In a phase II double-blinded, placebo-controlled trial, we randomized newborns to receive Epo (1000 U/kg intravenously; n = 24) or placebo (n = 26) at 1, 2, 3, 5, and 7 days of age. All infants had moderate/severe encephalopathy; perinatal depression (10 minute Apgar <5, pH <7.00 or base deficit 15, or resuscitation at 10 minutes); and received hypothermia. Primary outcome was neurodevelopment at 12 months assessed by the Alberta Infant Motor Scale and Warner Initial Developmental Evaluation. Two independent observers rated MRI brain injury severity by using an established scoring system.The mean age at first study drug was 16.5 hours (SD, 5.9). Neonatal deaths did not significantly differ between Epo and placebo groups (8% vs 19%, P = .42). Brain MRI at mean 5.1 days (SD, 2.3) showed a lower global brain injury score in Epo-treated infants (median, 2 vs 11, P = .01). Moderate/severe brain injury (4% vs 44%, P = .002), subcortical (30% vs 68%, P = .02), and cerebellar injury (0% vs 20%, P = .05) were less frequent in the Epo than placebo group. At mean age 12.7 months (SD, 0.9), motor performance in Epo-treated (n = 21) versus placebo-treated (n = 20) infants were as follows: Alberta Infant Motor Scale (53.2 vs 42.8, P = .03); Warner Initial Developmental Evaluation (28.6 vs 23.8, P = .05).High doses of Epo given with hypothermia for hypoxic-ischemic encephalopathy may result in less MRI brain injury and improved 1-year motor function.
PubMed | Centers for Disease Control and Prevention, LLC Marketing & Data science, Rti International and Childrens National Health Systems
Type: | Journal: Epilepsy & behavior : E&B | Year: 2016
Self-reported epilepsy may be influenced by culture, knowledge, and beliefs. We screened 6420 residents of the District of Columbia (DC) for epilepsy to investigate whether socio-demographics were associated with whether they reported their diagnosis as epilepsy or as seizure disorder. Lifetime and active prevalence rates were 0.54% and 0.21%, respectively for epilepsy and 1.30% and 0.70%, respectively for seizure disorder. Seizure disorder was reported significantly more often than epilepsy among blacks, females, respondents50years, those with lower level education, respondents who lived alone and in low income neighborhoods, and those who resided in DC for at least five years. Clinicians should assure that patients and caregivers understand that epilepsy is synonymous with seizure disorder and other culturally appropriate terms, in order to optimize compliance with treatment, disease management instructions, and utilization of other resources targeted at persons with epilepsy. Furthermore, education and awareness campaigns aimed at improving access-to-care, reducing stigma, and increasing awareness of adverse events, such as SUDEP, should include a more diverse definition of epilepsy in their messages.
PubMed | Childrens Hospital Los Angeles, Hospital for Sick Children, Palmetto Health Childrens Hospital, St Jude Childrens Research Hospital and 2 more.
Type: Journal Article | Journal: Cancer | Year: 2016
Symptoms arising from disease or treatment are subjective experiences. Insight into pediatric oncology treatment side effects or symptoms is ideally obtained from direct inquiry to the ill child. A concept-elicitation phase in a patient-reported outcome (PRO) instrument design provides an opportunity to elicit childrens voices to shape cancer symptom selection and terminology.Through semistructured, one-on-one, voice-recorded interviews, symptom data were collected from 96 children with cancer between the ages of 7 and 20 years who were undergoing oncologic treatment at 7 pediatric oncology sites in the United States and Canada.The mean number of symptoms reported per child over the prior 7 days was 1.49 (range, 0-7; median, 1; standard deviation, 1.56). The most common symptoms across all age groups were tiredness or fatigue, nausea or vomiting, aches or pains, and weakness. There was not a statistically significant correlation between self-reported wellness and the number of reported symptoms (r =-0.156, n = 65, P =.215) or the number of symptoms reported by age group or diagnosis type. Forty participants reported experiencing a change in their body in the past week, with one-third of these changes unanticipated. Only through direct questions about feelings were emotional symptoms revealed because 90.6% of interviewees who discussed feelings (48 of 53) did so only in the context of direct questioning on feelings. Adolescents were more likely than younger children to discuss feelings as part of the interview.Concept elicitation from children and adolescents has the potential to enable researchers to develop age-appropriate, accurately representative PRO measures.
PubMed | Childrens National Health Systems, Indiana Hemophilia and Thrombosis Center, Emory University and Center for Cancer and Blood Disorders
Type: Journal Article | Journal: Pediatric blood & cancer | Year: 2016
The prognosis for homozygous -thalassemia is changing. Prenatal diagnosis and intrauterine transfusions (IUT) reduce maternofetal morbidity and mortality; hematopoietic stem cell transplant (HSCT) is curative. Empiric evidence to support IUT and HSCT to treat homozygous -thalassemia is lacking. The first case of curative HSCT for homozygous -thalassemia was reported in 1997. Nearly 20 years later, five additional reports are published. We review the literature and report an institutional experience with three homozygous -thalassemia patients. The first died shortly after birth. The second underwent HSCT after years of chronic transfusion therapy. The third benefited from IUT and HSCT. These cases exemplify the varied outcomes associated with this condition.
Snyder J.,Childrens National Health Systems |
Butzner J.D.,University of Calgary |
DeFelice A.R.,Columbia University |
Fasano A.,Massachusetts General Hospital |
And 3 more authors.
Pediatrics | Year: 2016
Although the need for effective long-term follow-up for patients with celiac disease (CD) has been recognized by many expert groups, published practice guidelines have not provided a clear approach for the optimal management of these patients. In an attempt to provide a thoughtful and practical approach for managing these patients, a group of experts in pediatric CD performed a critical review of the available literature in 6 categories associated with CD to develop a set of best practices by using evidencebased data and expert opinion. The 6 categories included the following: bone health, hematologic issues, endocrine problems, liver disease, nutritional issues, and testing. Evidence was assessed by using standardized criteria for evaluating the quality of the data, grade of evidence, and strength of conclusions. Over 600 publications were reviewed, and 172 were chosen for inclusion. The thorough review of the results demonstrated that the quality of the data available was often insufficient to provide unequivocal best practices. However, using the available data and the clinical experience of the panel, a practical framework for the management of children with CD was created. These recommendations were developed by our expert panel and do not necessarily reflect the policy of the American Academy of Pediatrics. The potential usefulness of these best practices is underscored by the fact that consensus, measured by the outcome of anonymous voting, was reached by the panel for 24 of the 25 questions. We hope that these best practices may be useful to the pediatric gastroenterology and larger general pediatric communities. © Copyright 2016 by the American Academy of Pediatrics.
PubMed | University of Calgary, University of Chicago, Childrens National Health Systems, Childrens Hospital Colorado and 3 more.
Type: Journal Article | Journal: Pediatrics | Year: 2016
Although the need for effective long-term follow-up for patients with celiac disease (CD) has been recognized by many expert groups, published practice guidelines have not provided a clear approach for the optimal management of these patients. In an attempt to provide a thoughtful and practical approach for managing these patients, a group of experts in pediatric CD performed a critical review of the available literature in 6 categories associated with CD to develop a set of best practices by using evidence-based data and expert opinion. The 6 categories included the following: bone health, hematologic issues, endocrine problems, liver disease, nutritional issues, and testing. Evidence was assessed by using standardized criteria for evaluating the quality of the data, grade of evidence, and strength of conclusions. Over 600 publications were reviewed, and 172 were chosen for inclusion. The thorough review of the results demonstrated that the quality of the data available was often insufficient to provide unequivocal best practices. However, using the available data and the clinical experience of the panel, a practical framework for the management of children with CD was created. These recommendations were developed by our expert panel and do not necessarily reflect the policy of the American Academy of Pediatrics. The potential usefulness of these best practices is underscored by the fact that consensus, measured by the outcome of anonymous voting, was reached by the panel for 24 of the 25 questions. We hope that these best practices may be useful to the pediatric gastroenterology and larger general pediatric communities.
Mackey E.R.,Childrens National Health Systems |
Struemph K.,Virginia Commonwealth University |
Powell P.W.,Virginia Commonwealth University |
Chen R.,Georgetown University |
And 2 more authors.
Health Psychology | Year: 2014
Objective: The current study assessed relations among maternal depressive symptoms, poorer youth diabetes adherence, and glycemic control. Specifically, hypothesized mediating links of lowered expectations of parental involvement, less parental monitoring, and more conflict were examined. Method: Participants included 225 mothers and their young adolescents, aged 11-14 years (M = 12.73 years, SD = 1.2) diagnosed with T1D. Maternal depressive symptoms and outcome expectancies for maternal involvement were evaluated with self-report questionnaires. Multisource, parent/youth, and multimethod assessment of adherence, parental monitoring, and conflict were evaluated during a baseline assessment from a larger randomized clinical trial. Results: The first hypothesized structural equation model demonstrated a good fit and indicated that more maternal depressive symptoms were directly associated with less parental monitoring and more conflict, which in turn each were associated with poorer adherence and glycemic control. Although higher involvement expectancies were associated with more monitoring and less conflict, they were not associated with other model variables. A second alternative model also fit the data well; poorer youth adherence was associated with more conflict that in turn related to maternal depressive symptoms. Conclusions: Two models were tested by which maternal depressive symptoms and poorer youth adherence were interrelated via less monitoring and more conflict. Follow-up longitudinal evaluation can best characterize the full extent of these relations. © 2014 American Psychological Association.
Hill D.L.,Children's Hospital of Philadelphia |
Miller V.,Children's Hospital of Philadelphia |
Walter J.K.,Children's Hospital of Philadelphia |
Carroll K.W.,Children's Hospital of Philadelphia |
And 5 more authors.
BMC Palliative Care | Year: 2014
Background: Parents of seriously ill children participate in making difficult medical decisions for their child. In some cases, parents face situations where their initial goals, such as curing the condition, may have become exceedingly unlikely. While some parents continue to pursue these goals, others relinquish their initial goals and generate new goals such as maintaining the child's quality of life. We call this process of transitioning from one set of goals to another regoaling. Discussion. Regoaling involves factors that either promote or inhibit the regoaling process, including disengagement from goals, reengagement in new goals, positive and negative affect, and hopeful thinking. We examine these factors in the context of parental decision making for a seriously ill child, presenting a dynamic conceptual model of regoaling. This model highlights four research questions that will be empirically tested in an ongoing longitudinal study of medical decision making among parents of children with serious illness. Additionally, we consider potential clinical implications of regoaling for the practice of pediatric palliative care. Summary. The psychosocial model of regoaling by parents of children with a serious illness predicts that parents who experience both positive and negative affect and hopeful patterns of thought will be more likely to relinquish one set of goals and pursue a new set of goals. A greater understanding of how parents undergo this transition may enable clinicians to better support them through this difficult process. © 2014 Hill et al.; licensee BioMed Central Ltd.
PubMed | Children's Hospital of Philadelphia, Childrens Hospital of the Kings Daughters and Childrens National Health Systems
Type: | Journal: Pediatrics | Year: 2016
Asthma triggers >775000 emergency department (ED) visits for children each year. Approximately 80% of these visits occur in community EDs. We performed this study to measure effects of partnership with a community ED on pediatric asthma care.For this quality improvement initiative, we implemented an evidence-based pediatric asthma guideline in a community ED. We included patients whose clinical impression in the medical decision section of the electronic health record contained the words asthma, bronchospasm, or wheezing. We reviewed charts of included patients 12 months before guideline implementation (August 2012-July 2013) and 19 months after guideline implementation (August 2013-February 2015). Process measures included the proportion of children who had an asthma score recorded, the proportion who received steroids, and time to steroid administration. The outcome measure was the proportion of children who needed transfer for additional care.In total, 724 patients were included, 289 during the baseline period and 435 after guideline implementation. Overall, 64% of patients were assigned an asthma score after guideline implementation. During the baseline period, 60% of patients received steroids during their ED visit, compared with 76% after guideline implementation (odds ratio 2.2; 95% confidence interval, 1.6-3.0). After guideline implementation, the mean time to steroids decreased significantly, from 196 to 105 minutes (P < .001). Significantly fewer patients needed transfer after guideline implementation (10% compared with 14% during the baseline period) (odds ratio 0.63; 95% confidence interval, 0.40-0.99).Our study shows that partnership between a pediatric tertiary care center and a community ED is feasible and can improve pediatric asthma care.