Childhood Cancer Symptom Cluster: Leukemia and Health-Related Quality of Life.

OBJECTIVES: To examine the relationship of the Childhood Cancer Symptom Cluster-Leukemia (CCSC-L) with health-related quality of life (HRQOL). SAMPLE & SETTING: 327 children receiving treatment for acute lymphoblastic leukemia from four pediatric oncology programs across the United States. METHODS & VARIABLES: Participants completed fatigue, sleep disturbance, pain, nausea, and depression symptom questionnaires at four time points; these symptoms comprised the CCSC-L. HRQOL was measured at the start of postinduction therapy and then at the start of maintenance therapy. Relationships between the CCSC-L and HRQOL scores were examined with longitudinal parallel-process modeling. RESULTS: The mean HRQOL significantly increased over time (p < 0.001). The CCSC-L had a significant negative association with HRQOL scores at the start of postinduction therapy (beta = -0.53, p < 0.005) and the start of maintenance therapy (beta = -0.33, p < 0.015). Participants with more severe symptoms in the CCSC-L over time had significantly lower HRQOL at the start of maintenance therapy (beta = -0.42, p < 0.005). IMPLICATIONS FOR NURSING: Nurses are pivotal in providing management strategies to minimize symptom severity that may improve HRQOL.

Pediatric oncology nurses' perceptions of prognosis-related communication.

BACKGROUND: Disclosure of prognosis-related information is an essential aspect of communication with pediatric patients with cancer and their families. The nurse is believed to play an important role in this process, but nurse perceptions and experiences have not been well-described. PURPOSE: Provide an exploration of pediatric oncology nurses' experiences with prognosis-related communication (PRC). METHOD: Mixed-methods, multiphase design. This paper highlights the qualitative portion of the study. FINDINGS: Three themes were identified: Importance of collaboration, impact of PRC, and delivery of prognostic information. DISCUSSION: Collaboration is a critical element of PRC. Nurses are often not included in the disclosure process, which limits the ability of nurses to fully function in their roles, compromising patient, family, and nurse outcomes. A paradigm shift is required to empower nurses to be more active participants. More education of physicians and nurses is necessary to consistently engage nurses in PRC and prepare nurses for critical conversations.

Patient/Family Education for Newly Diagnosed Pediatric Oncology Patients.

There is a paucity of data to support evidence-based practices in the provision of patient/family education in the context of a new childhood cancer diagnosis. Since the majority of children with cancer are treated on pediatric oncology clinical trials, lack of effective patient/family education has the potential to negatively affect both patient and clinical trial outcomes. The Children's Oncology Group Nursing Discipline convened an interprofessional expert panel from within and beyond pediatric oncology to review available and emerging evidence and develop expert consensus recommendations regarding harmonization of patient/family education practices for newly diagnosed pediatric oncology patients across institutions. Five broad principles, with associated recommendations, were identified by the panel, including recognition that (1) in pediatric oncology, patient/family education is family-centered; (2) a diagnosis of childhood cancer is overwhelming and the family needs time to process the diagnosis and develop a plan for managing ongoing life demands before they can successfully learn to care for the child; (3) patient/family education should be an interprofessional endeavor with 3 key areas of focus: (a) diagnosis/treatment, (b) psychosocial coping, and (c) care of the child; (4) patient/family education should occur across the continuum of care; and (5) a supportive environment is necessary to optimize learning. Dissemination and implementation of these recommendations will set the stage for future studies that aim to develop evidence to inform best practices, and ultimately to establish the standard of care for effective patient/family education in pediatric oncology.

Understanding Effective Delivery of Patient and Family Education in Pediatric OncologyA Systematic Review From the Children's Oncology Group [Formula: see text].

A diagnosis of childhood cancer is a life-changing event for the entire family. Parents must not only deal with the cancer diagnosis but also acquire new knowledge and skills to care safely for their child at home. Best practices for delivery of patient/family education after a new diagnosis of childhood cancer are currently unknown. The purpose of this systematic review was to evaluate the existing body of evidence to determine the current state of knowledge regarding the delivery of education to newly diagnosed pediatric oncology patients and families. Eighty-three articles regarding educational methods, content, influencing factors, and interventions for newly diagnosed pediatric patients with cancer or other chronic illnesses were systematically identified, summarized, and appraised according to the Grading of Recommendations Assessment, Development, and Evaluation criteria. Based on the evidence, 10 recommendations for practice were identified. These recommendations address delivery methods, content, influencing factors, and educational interventions for parents and siblings. Transferring these recommendations into practice may enhance the quality of education delivered by health care providers and received by patients and families following a new diagnosis of childhood cancer.

Processing Information After a Child's Cancer Diagnosis-How Parents Learn.

Parents of a child newly diagnosed with cancer must receive an extensive amount of information before their child's initial hospital discharge; however, little is known about best practices for providing this education. An interpretive descriptive study design was used to describe actual and preferred educational content, timing, and methods among parents of children newly diagnosed with cancer prior to their child's first hospital discharge. Twenty parents of children diagnosed with various malignancies participated in individual interviews 2 to 12 months after their child's diagnosis. Data were analyzed using constant comparative analysis. Education delivery occurred in a telling manner at diagnosis transitioning to a reciprocal process of teaching during the inpatient stay, then primarily back to telling immediately before discharge. Parents expressed a variety of preferred learning styles but noted that their preferences were rarely assessed by health care providers. Multiple factors influenced parents' ability to process educational information received during their child's initial hospitalization. Findings suggest that nursing practices should include assessing for influencing factors, providing anticipatory guidance, and incorporating parents' preferred learning style into the educational plan.

Implementing a Daily Maintenance Care Bundle to Prevent Central Line-Associated Bloodstream Infections in Pediatric Oncology Patients.

Eliminating central line-associated bloodstream infection (CLABSI) is a national priority. Central venous catheter (CVC) care bundles are composed of a series of interventions that, when used together, are effective in preventing CLABSI. A CVC daily maintenance care bundle includes procedural guidelines for hygiene, dressing changes, and access as well as specific timeframes. Failure to complete one of the components of the care bundle predisposes the patient to a bloodstream infection. A nurse-led multidisciplinary team implemented and, for six months, sustained a daily maintenance care bundle for pediatric oncology patients. This quality improvement project focused on nursing staffs' implementation of the daily maintenance care bundle and the sustainment of the intervention. The project used a pre-post program design to evaluate outcomes of CVC daily maintenance care bundle compliancy and CLABSI. A statistically significant increase between the pre- and post-assessments of the compliance was noted with the CVC daily maintenance care bundle. CLABSI infection rates decreased during the intervention. Strategies to implement practice change and promote sustainability are discussed.

Symptom prevalence and physiologic biomarkers among adolescents using a mobile phone intervention following hematopoietic stem cell transplantation.

PURPOSE/OBJECTIVES: To examine symptom reports and physiologic parameters in adolescents using the Eating After Transplant (EAT!) intervention during recovery after hematopoietic stem cell transplantation (HSCT). DESIGN: Repeated measures design. SETTING: HSCT service at a pediatric teaching institution in the southern United States. SAMPLE: 16 adolescents recovering from a first-time allogeneic HSCT. METHODS: Use of EAT! was monitored electronically, symptom reports were obtained from a questionnaire, and physiologic parameters were obtained from the medical record at HSCT hospital discharge and 20, 40, and 60 days postdischarge. MAIN RESEARCH VARIABLES: EAT! use, symptom prevalence, symptom-related distress, and physiologic parameters including weight, body mass index (BMI), pre-albumin, and albumin. FINDINGS: Symptom prevalence was highest at hospital discharge and steadily declined; however, mean symptom distress scores remained stable. Mean weight and BMI significantly declined during the first 60 days postdischarge; pre-albumin and albumin markers were unchanged. No correlation was noted among use of EAT! and any research variables. CONCLUSIONS: The most frequent symptoms were not always the most distressing symptoms. Weight and BMI significantly declined during HSCT recovery. IMPLICATIONS FOR NURSING: Nurses should assess symptom frequency and distress to fully understand patients' symptom experiences. Nurses should monitor weight and BMI throughout HSCT recovery.

Feasibility of a symptom management intervention for adolescents recovering from a hematopoietic stem cell transplant.

BACKGROUND: Adolescents undergoing a hematopoietic stem cell transplantation (HSCT) experience a variety of adverse effects and eating difficulties. Few interventions exist to assist patients with self-care after HSCT hospitalization. The Eating After Transplant (EAT!) program is a mobile phone applications developed to assist adolescents with self-management of common eating-related issues during HSCT recovery. OBJECTIVE: This study examined the acceptability and usability of the EAT! program among adolescents and assessed the competency of the participants using the program after hospital discharge through the first 100 days after HSCT. METHODS: A repeated-measures design was used to evaluate the EAT! application with 16 adolescent patients recovering from an allogeneic HSCT. Participants provided verbal feedback and used a Likert scale to rate acceptability and usability of the application. In addition, a tracking device monitored use of the application. Competency was measured with orientation time and independent demonstration of use of the application. RESULTS: Acceptability remained high throughout the study, but use significantly decreased over time. Patients reported familiarity with the program's content as the reason for the declining use. Competency was excellent with a short orientation period and independent demonstration throughout the study. CONCLUSIONS: A mobile phone application is a feasible intervention to educate adolescents with symptom management strategies. Future research needs to examine factors affecting sustainability of use over time. IMPLICATIONS FOR PRACTICE: Healthcare providers need to continue to develop and evaluate innovative methods to educate adolescents on effective self-care strategies throughout HSCT recovery.

Symptom clusters in children.

PURPOSE OF REVIEW: Researchers have focused on identifying and describing symptom experiences among children with various diseases but symptoms can have a synergistic and/or an antecedent effect that must be evaluated. This review reports the current knowledge of symptoms among various pediatric diseases and highlights symptom cluster research. RECENT FINDINGS: Symptoms of depression and anxiety are the most prevalent variables studied across pediatric disease studies followed by pain, fatigue, and quality of life. Although previous pediatric symptom research provides a foundation for understanding the complexities of these symptoms, there is limited evidence on symptom cluster research in pediatrics. Pain and fatigue are the most common symptoms analyzed for correlations, and relationships among symptoms that have been evaluated in children with juvenile idiopathic arthritis, HIV, cancer, cardiac disease requiring an implantable cardioverter defibrillator, and at end of life. Pain and fatigue have been associated with sleep disturbances, anxiety, depression, anorexia, and nausea/vomiting. SUMMARY: Pediatric oncology researchers are leading the way with symptom cluster studies; however, this work remains in the early stages. There is great potential to advance the state of the science with cluster analysis. Future research work should focus on evaluating symptoms and their interactions.

Aggressive peripheral CD70-positive T-cell lymphoma associated with severe chronic active EBV infection.

Severe chronic active Epstein-Barr virus infection (CAEBV) in T or NK cells is a rare complication of latent EBV infection. CAEBV associated T-cell lymphoproliferative disease (LPD) consists of polyclonal lesions as well as aggressive lymphomas. Here, we report such a patient. In addition, we show that this primary CAEBV associated T-cell lymphoma expresses CD70 and is sensitive to killing by CD70-specific T cells, identifying CD70 as a potential immunotherapeutic target for CAEBV-associated T-cell lymphoma.