The Utility of Verbal Therapy for Pediatric Cancer Patients and Survivors: Expressive Writing, Video Narratives, and Bibliotherapy Exercises.

Childhood cancer is a stressful experience. No pediatric patient, however, should be made to feel as if their concerns and feelings about their cancer experience must be bottled up inside. Importantly, talking and writing about one's illness has myriad implications for young cancer patients and survivors.

Human Flourishing in Adolescents with Cancer: Experiences of Pediatric Oncology Health Care Professionals.

Purpose: This study explores human flourishing (HF) in adolescents with cancer (AC) as witnessed by their health care providers, and it develops a list of critical attributes associated with HF to describe the positive outcomes witnessed.

Design And Methods: Our study used a qualitative descriptive design incorporating data from an open-ended electronic survey and semi-structured individual interviews with 17 pediatric oncology health care providers.

Results: We found 3 major themes (positive forward motion, connectedness, and self-character) representing 11 critical attributes of human flourishing in AC: (1) initiative and enterprise, (2) positivity and evocativeness, (3) tranquility and maturity, (4) perseverance and tenacity, (5) compassion and empathy, (6) social engagement and connection, (7) wisdom and translation into life, (8) supportive background, (9) self-awareness and self-agency, (10) transcendence and full potential, and (11) meaning-making.

Ethical considerations of using a single minor donor for three bone marrow harvests for three HLA-matched siblings with primary immunodeficiency.

Allogeneic hematopoietic stem cell transplantation is curative for primary immunodeficiencies. Bone marrow from an unaffected human leukocyte antigen (HLA)-identical sibling donor is the ideal graft source. For minor donors, meaningful consent or assent may not be feasible, and permission from parents or legal guardians is considered acceptable.

Exploring the vagueness of Religion & Spirituality in complex pediatric decision-making: a qualitative study.

Background: Medical advances have led to new challenges in decision-making for parents of seriously ill children. Many parents say religion and spirituality (R&S) influence their decisions, but the mechanism and outcomes of this influence are unknown. Health care providers (HCPs) often feel unprepared to discuss R&S with parents or address conflicts between R&S beliefs and clinical recommendations.

Bone marrow transplantation for CVID-like humoral immune deficiency associated with red cell aplasia.

Patients with common variable immunodeficiency (CVID) have a higher incidence of autoimmune disease, which may mark the disease onset; however, anemia secondary to pure red cell aplasia is an uncommon presenting feature. Here, we describe a case of CVID-like humoral immune deficiency in a child who initially presented with red cell aplasia and ultimately developed progressive bone marrow failure. Although bone marrow transplantation (BMT) has been associated with high mortality in CVID, our patient was successfully treated with a matched sibling BMT and engrafted with >98% donor chimerism and the development of normal antibody titers to diphtheria and tetanus toxoids.

64Cu-p-NH2-Bn-DOTA-hu14.18K322A, a PET radiotracer targeting neuroblastoma and melanoma.

Unlabelled: The hu14.18K322A variant of the GD2-targeting antibody hu14.18 has been shown to elicit a level of antibody-dependent cell-mediated cytotoxicity toward human neuroblastoma cells similar to that of the parent antibody.

The nursing dimension of providing palliative care to children and adolescents with cancer.

Palliative care for children and adolescents with cancer includes interventions that focus on the relief of suffering, optimization of function, and improvement of quality of life at any and all stages of disease. This care is most effectively provided by a multidisciplinary team. Nurses perform an integral role on that team by identifying symptoms, providing care coordination, and assuring clear communication.

Ethical considerations for pharmacogenomic testing in pediatric clinical care and research.

The information gained from pharmacogenomic testing is becoming increasingly recognized as an opportunity to improve our current dosing strategies for children. The identification of gene polymorphisms that influence drug disposition and effect can be used to help predict a child's susceptibility to toxicity and/or response to a particular drug or therapeutic regimen. However, the potential consequences of performing genomic analysis in children raise important ethical considerations.

Impact of continuous renal replacement therapy on oxygenation in children with acute lung injury after allogeneic hematopoietic stem cell transplantation.

Background: Acute lung injury (ALI) continues to carry a high mortality rate in children after allogeneic hematopoietic stem cell transplant (HSCT). Continuous renal replacement therapy (CRRT) is often used for these patients for various indications including renal failure and fluid overload, and may have a beneficial effect on oxygenation and survival. Therefore, we sought to determine the effect of CRRT on oxygenation in mechanically ventilated pediatric allogeneic HSCT patients with ALI, and to document survival to intensive care unit discharge in this at-risk population receiving both mechanical ventilation and CRRT.

Availability of palliative care services for children with cancer in economically diverse regions of the world.

Purpose: We assessed the availability and quality of palliative care for children with cancer according to national income per capita.

Methods: We surveyed physicians who care for children with cancer using the Cure4Kids website (http://www.cure4kids.

Outcomes of hematopoietic stem cell transplant patients who received continuous renal replacement therapy in a pediatric oncology intensive care unit.

Objectives: To assess the long-term benefits of continuous renal replacement therapy (CRRT) in this patient population and to analyze factors associated with survival. Hematopoietic stem cell transplantation is being utilized as curative therapy for a variety of disorders. However, organ dysfunction is commonly associated with this therapy.

Anti-GD2 antibody therapy for GD2-expressing tumors.

In the development of novel immune therapies for high-risk cancers, one goal is to find tumor targets that are not widely shared by normal cells. One such target is the surface disialoganglioside GD2. This antigen is expressed on the surface of a variety of tumors for which no curative therapies exist for patients with advanced disease.

Anti-GD(2) with an FC point mutation reduces complement fixation and decreases antibody-induced allodynia.

Monoclonal antibodies against GD(2) ganglioside, such as ch14.18, the human-mouse chimeric antibody, have been shown to be effective for the treatment of neuroblastoma. However, treatment is associated with generalized, relatively opiate-resistant pain.

Agency and communication challenges in discussions of informed consent in pediatric cancer research.

In this article we examine the discourse of four focus groups we conducted at a pediatric research hospital in which we queried teenage patients, parents, nurses, and physicians about their perceptions of the informed consent process in research. Autonomy, as the goal of informed consent, is a murky concept, with some ethicists questioning the possibility that it can ever be attained. We argue that it might be more productive to consider agency, which we define as language and action that are constructed, negotiated, and maintained through effective communication.

Decision-making by adolescents and parents of children with cancer regarding health research participation.

Background: Low rates of participation of adolescents and young adults (AYAs) in clinical oncology trials may contribute to poorer outcomes. Factors that influence the decision of AYAs to participate in health research and whether these factors are different from those that affect the participation of parents of children with cancer.

Methods: This is a secondary analysis of data from validated questionnaires provided to adolescents (>12 years old) diagnosed with cancer and parents of children with cancer at 3 sites in Canada (Halifax, Vancouver, and Montreal) and 2 in the United States (Atlanta, GA, and Memphis, TN).

Immune therapies for neuroblastoma.

Neuroblastoma, a solid tumor arising from developing cells of the sympathetic nervous system, is the most common extracranial tumor in children. The prognosis for high-risk neuroblastoma remains poor with conventional treatment, and new approaches are therefore being explored to treat this disease. One such alternative therapy that holds promise is immune therapy.

Providing research results to participants: attitudes and needs of adolescents and parents of children with cancer.

Purpose: There is an increasing demand for researchers to provide research results to participants. Our aim was to define an appropriate process for this, based on needs and attitudes of participants.

Methods: A multicenter survey in five sites in the United States and Canada was offered to parents of children with cancer and adolescents with cancer.

Advances in pediatric hematopoietic stem cell transplantation.

Allogeneic and autologous hematopoietic stem cell transplantation (HSCT) has become a therapeutic option for an increasing number of patients with otherwise incurable leukemias, solid tumors, immunodeficiencies, hemoglobinopathies and metabolic diseases. For patients requiring an allogeneic transplant, the addition of unrelated cord blood units and partially matched family member donors as alternate stem cell sources has increased the chances that an appropriate donor can be identified. In addition, new approaches to stem cell graft engineering are yielding insights into potential cellular immune therapies, which may decrease the adverse effects of HSCT such as graft-versus-host disease (GVHD) and harness the alloimmune graft-versus-leukemia effect.

Iron overload in survivors of childhood leukemia after allogeneic hematopoietic stem cell transplantation.

Iron overload has not been studied extensively and prospectively in pediatric survivors of allogeneic hematopoietic stem cell transplantation (HSCT); therefore, we conducted a prospective long-term study of 133 survivors of childhood leukemia to assess the incidence of and risk factors for iron overload and to investigate its association with organ dysfunction. One yr after HSCT, the mean serum ferritin level was 1158 ng/mL (range, 22-3264 ng/mL), with 124 patients (93.2%) having a serum ferritin level that exceeded the upper limit of the normal range (110 ng/mL).

Changes in outcomes (1996-2004) for pediatric oncology and hematopoietic stem cell transplant patients requiring invasive mechanical ventilation.

Objective: To assess the following hypotheses regarding mechanically ventilated pediatric oncology patients, including those receiving hematopoietic stem cell transplant (HSCT) and those not receiving HSCT: 1) outcomes are more favorable for nontransplant oncology patients than for those requiring HSCT; 2) outcomes have improved for both populations over time; and 3) there are factors available during the time of mechanical ventilation that identify patients with a higher likelihood of dying.

Design: Retrospective review.

Setting: Free-standing, tertiary care, pediatric hematology oncology hospital.

Challenges faced by research ethics committees in El Salvador: results from a focus group study.

Objective: To identify perceived barriers to capacity building for local research ethics oversight in El Salvador, and to set an agenda for international collaborative capacity building.

Methods: Focus groups were formed in El Salvador which included 17 local clinical investigators and members of newly formed research ethics committees. Information about the proposed research was presented to participants during an international bioethics colloquium sponsored and organized by the St.

Integration of palliative care practices into the ongoing care of children with cancer: individualized care planning and coordination.

Most parents of children with cancer have dual primary goals: a primary cancer-directed goal of cure and a primary comfort-related goal of lessening suffering. Early introduction of palliative care principles and practices into their child's treatment is respectful and supportive of these goals. The Individualized Care Planning and Coordination Model is designed to integrate palliative care principles and practices into the ongoing care of children with cancer.

A prospective cohort study of late sequelae of pediatric allogeneic hematopoietic stem cell transplantation.

As survivors of pediatric allogeneic hematopoietic stem cell transplantations (HSCTs) increase in number, it is increasingly important to evaluate their well-being. We conducted this prospective cohort study to evaluate the cumulative incidence and risk factors for late sequelae of HSCT. Comprehensive surveillance tests were performed annually on every participant, regardless of signs and symptoms, to obtain accurate information on the time-of-onset of each late event to allow hazard function analyses.