Assessing Pediatric Resident Needs in Grief and Bereavement Education.

Context: Pediatric residents care for dying children during training. Few educational efforts focus on helping trainees better understand their own grief process and the supports available to them and their patients' families.

Objectives: This work aims to assess pediatric residents' needs and preferences for content included in a curriculum on grief and bereavement.

Exploring perceptions of inpatient hospital attire in children with cancer.

Background: Attire bolsters identity, self-expression, and comfort. Hospital gowns are known to be distressing in adults. Attitudes of children with cancer toward hospital attire remain uninvestigated and may be a modifiable factor in overall well-being.

Longitudinal use of patient reported outcomes in pediatric leukemia and lymphoma reveals clinically relevant symptomatic adverse events.

Background: Leukemia and lymphoma (LL) are the most common cancer diagnoses of childhood with high survival rates, but not without impact on the child's functioning and quality of life. This study aimed to use patient-reported data to describe the symptomatic adverse event (AE) experiences among children with LL diagnoses.

Methods: Two hundred and fifty seven children and adolescents aged 7-18 years with a first LL diagnosis completed the Pediatric Patient-Reported version of the Common Terminology Criteria for Adverse Events (Ped-PRO-CTCAE) and Patient-Reported Outcome Measurement Information System (PROMIS) Pediatric measures before starting a treatment course (T1) and after the treatment (T2).

Profiles of Symptom Suffering and Functioning in Children and Adolescents Receiving Chemotherapy.

Background: Some children and adolescents receiving chemotherapy experience few symptom-related adverse events, whereas others experience multiple adverse events. If oncology nurses could identify patients likely to have pronounced chemotherapy-related adverse events, tailored supportive care could be matched to these patients' symptom burdens.

Objective: The aim of this study was to identify symptom profiles in children and adolescents before and after chemotherapy, and the sociodemographic and psychological factors associated with profile classification and change.

Searching for a cure on Facebook: Patterns of social media use amongst caregivers of children with brain tumors.

Objective: Social media (SM) is ubiquitous in modern society. How SM provides information, advice, and community to families coping with childhood brain tumors is poorly understood. We sought to understand how caregivers of children with brain tumors use and are affected by SM.

Lack of Concordance in Symptomatic Adverse Event Reporting by Children, Clinicians, and Caregivers: Implications for Cancer Clinical Trials.

Purpose: To examine concordance in symptomatic adverse event (AE) grading using the Common Terminology Criteria for Adverse Events (CTCAE 4.0) for clinicians and its patient-reported outcome (PRO) versions for children (Ped-PRO-CTCAE) and caregivers (Ped-PRO-CTCAE [Caregiver]).

Methods: Children age 7-18 years with a first cancer diagnosis, their clinicians, and caregivers completed CTCAE-based measures before starting a treatment course (T1) and after the treatment (T2).

Living in an online world: Social media experiences of adolescents and young adults with cancer.

Background: Despite widespread use, little is known about how adolescents and young adults (AYA) with cancer use social media (SM). This research characterized use and self-reported SM experiences among AYA with cancer.

Procedure: AYA, aged 12-26 years, receiving cancer care completed a mixed-methods survey regarding SM experiences.

Can Steps per Day Reflect Symptoms in Children and Adolescents Undergoing Cancer Treatment?

Background: Multiple symptoms occur in children receiving cancer therapy. Decreased steps per day may be associated with burdensome symptoms.

Objective: To evaluate associations between self-reported symptoms (pain interference, anxiety, depressive symptoms, psychological stress, and fatigue) and function (physical function-mobility and physical activity) and cumulative symptom count with steps per day.

Emergency management of fever and neutropenia in children with cancer: A review.

Introduction: Care of pediatric cancer patients is increasingly being provided by physicians in community settings, including general emergency departments. Guidelines based on current evidence have standardized the care of children undergoing chemotherapy or hematopoietic stem cell transplantation (HSCT) presenting with fever and neutropenia (FN).

Objective: This narrative review evaluates the management of pediatric patients with cancer and neutropenic fever and provides comparison with the care of the adult with neutropenic fever in the emergency department.

Recommended scoring approach for the pediatric patient-reported outcomes version of the Common Terminology Criteria for Adverse Events.

Background: Collecting symptom, function, and adverse event (AE) data directly from children and adolescents undergoing cancer care is more comprehensive and accurate than relying solely on their caregivers or clinicians for their interpretations. We developed the pediatric patient-reported outcomes version of the Common Terminology Criteria for Adverse Events (Ped-PRO-CTCAE) measurement system with input from children, parents, and clinicians. Here, we report how we determined the recommended Ped-PRO-CTCAE item scoring approach.

Patients, caregivers, and clinicians differ in performance status ratings: Implications for pediatric cancer clinical trials.

Background: The Lansky Play-Performance Scale (LPPS) is often used to determine a child's performance status for cancer clinical trial eligibility. Differences between clinician and caregiver LPPS ratings and their associations with child-reported functioning have not been evaluated.

Methods: Children aged 7 to 18 years who were receiving cancer treatment and their caregivers were recruited from 9 pediatric cancer centers.

Effect of methadone on QTc in infants.

Objective: Methadone has been associated with prolongation of the QTc interval (QTc) on electrocardiogram (ECG). In infants, the effects of methadone on the QTc are not well described. Our study's objective is to evaluate the QTc in infants being treated with methadone.

Clinical Course for Patients With Trisomy 13 and 18 Pursuing Life-Prolonging Therapies Versus Comfort-Directed Care.

Background: Care for infants with Trisomy 13 and 18 is evolving with more children being offered medical and surgical interventions. Parents and clinicians of children diagnosed with trisomy 13 and 18 would benefit from understanding how parental goals of care correlate with the subsequent clinical course of children with these conditions.

Objective: To describe and compare parental goals of care (GOC) and clinical course in infants with trisomy 13 and 18.

Feasibility and Acceptability of Reiki Therapy for Children Receiving Palliative Care in the Home.

Reiki is often used but not well studied in children. Yet, this gentle, light-touch therapy promotes relaxation and is appropriate for those receiving palliative care. This quasi-experimental pre-post mixed-methods 1-group pilot study examined the feasibility and acceptability of Reiki therapy as a treatment for children aged 7 to 16 years receiving palliative care.

Subjective Toxicity Profiles of Children in Treatment for Cancer: A New Guide to Supportive Care?

Context: Children and adolescents with cancer experience treatment-related, subjective adverse events (AEs). Identifying distinct groups of patients who predictably experience higher prevalence of AEs could guide patient care.

Objectives: Study aims were to 1) identify groups of children and adolescents reporting AEs using the Pediatric Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (Ped-PRO-CTCAE); 2) determine whether demographic and clinical characteristics predict AE group membership; and 3) examine whether AE group membership was related to the distal outcome of psychological stress.

Agreement Between Child Self-report and Caregiver-Proxy Report for Symptoms and Functioning of Children Undergoing Cancer Treatment.

Importance: Adult patients are considered the best reporters of their own health-related quality of life (HRQOL). Self-report in pediatrics has been challenged by a limited array of valid measures. Caregiver report is therefore often used as a proxy for child report.

"Give them the door but don't push them through it": Family Attitudes Toward Physician-Led Spiritual Care in Pediatric Palliative Medicine.

Little is known about pediatric caregivers' perceptions of religious or spiritual (R/S) care provided by physicians. We conducted a qualitative, semistructured interview study to understand perceptions of pediatric caregivers toward physician-led R/S care. Participants were 20 primary caregivers whose children were hospitalized and receiving palliative care services.

Validity and Reliability of the Pediatric Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events.

Background: Patient-reported outcome (PRO) measurements linked to Common Terminology Criteria for Adverse Events (CTCAE) grading may improve symptom adverse event (AE) reporting in pediatric oncology trials. We evaluated construct validity, responsiveness, and test-retest reliability of the Ped-PRO-CTCAE measurement system for children and adolescents undergoing cancer care.

Methods: A total of 482 children and adolescents (7-18 years, 41.

What to Do with an Abnormal Newborn Screen for Severe Combined Immune Deficiency.

Newborn screening for severe combined immunodeficiency has been implemented in all 50 states. This screening identifies newborns with T-cell lymphopenia. After an abnormal screening, additional testing is needed to determine if the child has severe combined immunodeficiency.

Mapping child and adolescent self-reported symptom data to clinician-reported adverse event grading to improve pediatric oncology care and research.

Background: Clinicians are the standard source for adverse event (AE) reporting in oncology trials, despite the subjective nature of symptomatic AEs. The authors designed a pediatric patient-reported outcome (PRO) instrument for symptomatic AEs to support the National Cancer Institute's Common Terminology Criteria for Adverse Events (CTCAE) (the Pediatric PRO-CTCAE). The current study developed a standardized algorithm that maps all possible Pediatric PRO-CTCAE response patterns to recommended CTCAE grades to improve the accuracy of AE reporting in pediatric oncology trials.

-V600E-mutated Rosai-Dorfman-Destombes disease and Langerhans cell histiocytosis with response to BRAF inhibitor.

Demonstration of -V600E in Rosai-Dorfman-Destombes disease requires sensitive molecular assays and molecular-based tissue immunostain. -V600E blood testing is important for disease-monitoring -mutated histiocytosis and can guide inhibitor treatment plans.

Pediatric palliative care in the medical neighborhood for children with medical complexity.

Children with medical complexity (CMC) are a medically fragile pediatric population that experience severe chronic illnesses resulting in significant health care needs, functional limitations, and health care utilization, and are at the highest risk for morbidity and mortality among all children. Furthermore, families and parents of CMC experience significant caregiver hardships and diminished quality of life. The field of pediatric palliative care has grown in recent years, in part to address the physical and psychosocial issues inherent to the care of these chronically ill children.