"If We Don't Beat It, How Long Will It Take?" Worries and Concerns of Children with Advanced Cancer and Their Parents.

Navigating pediatric advanced cancer is challenging for children and parents, resulting in increased risk for psychological distress. While research has explored parent worries/concerns, few studies have included children's perspectives. To explore worries/concerns in children with advanced cancer and their parents.

Benefit-finding in children with advanced cancer and their parents.

Objectives: Although pediatric cancer often causes significant stress for families, most childhood cancer survivors are resilient and do not exhibit severe or lasting psychopathology. Research demonstrates some survivors may report benefit-finding or positive outcomes following this stressful life event. However, considerably less research has included families of children who are unlikely to survive their illness.

Factors associated with caregiver strain among mothers and fathers of children with advanced cancer.

Objectives: To characterize caregiver experiences in the context of advanced pediatric cancer by identifying individual (i.e., demographic factors, stress) and family context factors (i.

Mixed-method examination of factors associated with adolescent decision-making and involvement in care in the context of advanced cancer.

Objectives: Adolescents with cancer often experience significant symptom burden and aggressive treatment near end-of-life. Increased adolescent involvement in care and decision-making may benefit health outcomes. Limited research has examined factors associated with adolescents' involvement in care in the context of advanced disease.

A LINE-1 mediated deletion resulting in germline retinoblastoma predisposition.

Retinoblastoma is an ocular cancer associated with genomic variation in the gene. In individuals with bilateral retinoblastoma, a germline variant in is identified in virtually all cases. We describe herein an individual with bilateral retinoblastoma for whom multiple clinical lab assays performed by outside commercial laboratories failed to identify a germline variant.

Higher order neurocognition in pediatric brain tumor survivors: What can we learn from white matter microstructure?

Background: Pediatric brain tumor survivors (PBTS) experience neurocognitive late effects, including problems with working memory, processing speed, and other higher order skills. These skill domains are subserved by various white matter (WM) pathways, but not much is known about these brain-behavior links in PBTS. This study examined the anterior corona radiata (ACR), inferior fronto-occipital fasciculi (IFOF), and superior longitudinal fasciculi (SLF) by analyzing associations among diffusion metrics and neurocognition.

Communication within families about advanced pediatric cancer: A qualitative study.

Objectives: This qualitative study examined how families share information and feelings about advanced pediatric cancer from the perspective of both parents and children, as well as how these perspectives vary by child developmental stage.

Methods: Participants (24 mothers, 20 fathers, 23 youth [children and adolescents]) were from a larger longitudinal study at an academic pediatric hospital. Eligible youth had advanced cancer (physician-estimated prognosis of <60%, relapse, or refractory disease), were aged 5-19 years (>8 years old to participate independently), had an English-speaking parent, and lived within 140 miles of the hospital.

Utilizing a Quality Improvement Strategy to Increase Faculty Engagement With Resident Learning Goals.

Background: Establishing and achieving learning goals (LGs) are important lifelong learning skills for residents. Faculty are critical in facilitation and achievement of residents' LGs, yet many have difficulty with this role in the busy inpatient setting.

Objectives: Our primary aim was to improve faculty engagement in resident LGs, targeting ≥80% of faculty achieving a mean score ≥goal, over a period of 1 year by setting prerotation expectations and stressing team-based faculty accountability during the rotation in the current inpatient learning environment.

Pilot Study of Associations Among Functional Connectivity and Neurocognition in Survivors of Pediatric Brain Tumor and Healthy Peers.

This pilot study examined the associations among functional connectivity in the salience, central executive, and default mode networks, and neurocognition in pediatric brain tumor survivors and healthy children. Thirteen pediatric brain tumor survivors (9 boys, M = 12.76 years) and 10 healthy children (6 boys, M = 12.

The impact of CNS-directed treatment on quality of life in childhood cancer survivors.

Purpose: Pediatric cancer survivors may have lower quality of life (QoL), but most research has assessed outcomes either in treatment or long-term survivorship. We focused on early survivorship (i.e.

Impact of central nervous system-directed treatment on competence and adjustment among children in early cancer survivorship.

Background: Central nervous system (CNS)-directed treatments can cause long-term academic, social, and emotional difficulties for children with cancer. However, limited research has examined the emergence of problems longitudinally and has often stratified risk by diagnosis alone. Therefore, this study compared competence and adjustment in children, who did and did not receive CNS-directed treatment, over the first 3 years following a cancer diagnosis.

Growing up after childhood cancer: maturity and life satisfaction in young adulthood.

Purpose: Young individuals face a variety of developmental tasks as they mature into adulthood. For survivors of childhood cancer, growing up may be more difficult due to their illness and late effects from treatment. This study is the first to quantitatively examine perceptions of maturity and how these perceptions contribute to satisfaction with life among young adult survivors of childhood cancer.

A quest for meaning: A qualitative exploration among children with advanced cancer and their parents.

Objective: Meaning-making may assist individuals in adaptation to stressful life events, particularly bereavement. However, few studies have examined meaning-making among pediatric populations with advanced illness to understand how this process unfolds before the child's death. This study explores meaning-making pre-bereavement among children with advanced cancer and their parents.

Impact of a Best Practice Prevention Bundle on Central Line-associated Bloodstream Infection (CLABSI) Rates and Outcomes in Pediatric Hematology, Oncology, and Hematopoietic Cell Transplantation Patients in Inpatient and Ambulatory Settings.

Background: Pediatric hematology, oncology, and hematopoietic cell transplantation (HCT) patients are at increased risk for bloodstream infections. The authors sought to evaluate the influence of a standardized best practice central venous catheter (CVC) maintenance bundle on the burden of and risk factors for mucosal barrier injury (MBI) and non-MBI central line-associated bloodstream infections (CLABSIs) across a common inpatient and ambulatory continuum in this high-risk population.

Methods: A retrospective cohort study of patients with underlying malignancy, hematologic disorders, and HCT recipients with a CVC in place at the time of CLABSI diagnosis in both inpatient and ambulatory settings from January 1, 2012 to December 31, 2016.

Excellent outcome of young children with nodular desmoplastic medulloblastoma treated on "Head Start" III: a multi-institutional, prospective clinical trial.

Background: "Head Start" III, was a prospective clinical trial using intensive induction followed by myeloablative chemotherapy and autologous hematopoietic cell rescue (AuHCR) to either avoid or reduce the dose/volume of irradiation in young children with medulloblastoma.

Methods: Following surgery, patients received 5 cycles of induction followed by myeloablative chemotherapy using carboplatin, thiotepa, and etoposide with AuHCR. Irradiation was reserved for children >6 years old at diagnosis or with residual tumor post-induction.

Romantic Relationships and Physical Intimacy Among Survivors of Childhood Cancer.

Childhood cancer survivors are at risk for impaired psychosocial functioning, but limited research has focused on psychosexual outcomes in young adulthood. This qualitative study examined the perceived impact of childhood cancer on adult survivors' romantic relationships and sexual/physical intimacy. Phone interviews were completed with adult survivors of childhood cancer, exploring the impact of cancer on (1) romantic relationships and (2) sexual/physical intimacy.

A Quality Improvement Approach to Increase Exercise Assessment in Survivors of Childhood Leukemia.

Introduction: Survivors of childhood cancer are at increased risk of treatment-related cardiovascular disease, the severity of which is impacted by the level of regular exercise. Exercise assessments (EAs) are not a routine component of follow-up care.

Methods: We incorporated a quantitative EA tool into the clinic triage during follow-up visits for survivors of acute lymphoblastic leukemia.

Germinoma Involving the Retina: An Unusual Presentation of Recurrent Intracranial Mixed Germ Cell Tumor.

Background: We report a patient with primary central nervous system mixed malignant germ cell tumor (GCT) who presented with recurrent malignant germinomatous infiltration of the retina.

Case Description: A 10-year-old girl initially presented with a large suprasellar mixed malignant GCT with a near-complete response after initial induction of chemotherapy and irradiation. Three and a half years after initial therapy, she presented with progressively worsening vision in her left eye.

Trajectories of health behaviors across early childhood cancer survivorship.

Objective: The majority of childhood cancer survivors develop at least one late effect subsequent to treatment (eg, cardiovascular disease and obesity). Consistent engagement in recommended health behaviors may mitigate some of these conditions. Researchers have identified early survivorship as a teachable moment, yet few studies have examined positive health behaviors during this period.

Complete Remission of an Extracranially Disseminated Anaplastic Pleomorphic Xanthoastrocytoma With Everolimus: A Case Report and Literature Review.

Background: Surgical resection is the treatment of choice for pleomorphic xanthoastrocytoma, while chemotherapy and radiation therapy are typically used in patients with anaplasia, metastasis, or sometimes in subtotally resected cases, especially upon recurrence. Extracranial dissemination has been only rarely reported. We describe a five year old boy with the rare occurrence multiply recurrent and extracranially disseminated anaplastic pleomorphic xanthoastrocytoma.

A multiyear quality improvement project to increase influenza vaccination in a pediatric oncology population undergoing active therapy.

Background: In an effort to reduce morbidity and mortality from vaccine preventable influenza infection, national consensus guidelines recommend vaccination of patients who are immunocompromised as a result of receiving cancer therapy. Quality improvement (QI) processes are a proven method used to improve vaccination rates.

Procedure: We conducted a QI initiative aimed at increasing influenza vaccination in oncology patients undergoing active treatment.

Psychosexual development and satisfaction with timing of developmental milestones among adult survivors of childhood cancer.

Objective: To extend the limited research on psychosexual development among childhood cancer survivors, by not only focusing on the prevalence and age of milestone attainment, but also survivors' attitudes toward the timing of reaching such milestones.

Methods: Adult survivors of childhood cancer (N = 90; M  = 29.8, SD = 5.

Clinical Indices Can Standardize and Monitor Pediatric Care: A Novel Mechanism to Improve Quality and Safety.

Objective: The Cancer Care Index (CCI), a single metric that sums the number of undesirable patient events in a given time frame (either preventable harm events or missed opportunities to provide optimal care), resulted in a 42% improvement in performance. Our objective was to test the index concept in other service lines to determine whether similar performance improvement occurred.

Study Design: Care indices were developed and introduced in 3 additional service lines: Nephrology (Chronic Kidney Disease Care Index; CKDCI), Pulmonology (Lung Transplantation Care Index; LTCI), and Otolaryngology (Tracheostomy Care Index; TCI).