Decision making in pediatric hematopoietic cell transplantation: Influential factors vary among diseases.

Hematopoietic cell transplantation (HCT) is not a trivial treatment decision in pediatrics. We sought to understand what influences this decision-making process from the perspectives of the pediatric patients, their family, and physicians. Using integrative review methods, we identified 19 relevant studies: six qualitative, ten quantitative, and three mixed methods. Synthesis of the results revealed six themes describing patient, family, and provider decision-making processes with distinct subthemes contrasting influential factors among malignant and nonmalignant diseases. Identification of what influences HCT decision making will aid in development of decision support, education, and communication strategies. The child/adolescent voice and provider perspective warrant more attention.

Establishing psychosocial palliative care standards for children and adolescents with cancer and their families: An integrative review.

BACKGROUND: Despite standardization in disease assessments and curative interventions for childhood cancer, palliative assessments and psychosocial interventions remain diverse and disparate. AIM: Identify current approaches to palliative care in the pediatric oncology setting to inform development of comprehensive psychosocial palliative care standards for pediatric and adolescent patients with cancer and their families. Analyze barriers to implementation and enabling factors. DESIGN: Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines framed the search strategy and reporting. Data analysis followed integrative review methodology. DATA SOURCES: Four databases were searched in May 2014 with date restrictions from 2000 to 2014: PubMed, Cochrane, PsycINFO, and Scopus. A total of 182 studies were included for synthesis. Types of studies included randomized and non-randomized trials with or without comparison groups, qualitative research, prior reviews, expert opinion, and consensus report. RESULTS: Integration of patient, parent, and clinician perspectives on end-of-life needs as gathered from primary manuscripts (using NVivo coding for first-order constructs) revealed mutual themes across stakeholders: holding to hope, communicating honestly, striving for relief from symptom burden, and caring for one another. Integration of themes from primary author palliative care outcome reports (second-order constructs) revealed the following shared priorities in cancer settings: care access; cost analysis; social support to include primary caregiver support, sibling care, bereavement outreach; symptom assessment and interventions to include both physical and psychological symptoms; communication approaches to include decision-making; and overall care quality. CONCLUSION: The study team coordinated landmark psychosocial palliative care papers into an informed conceptual model (third-order construct) for approaching pediatric palliative care and psychosocial support in oncology settings.

Palliative Care as a Standard of Care in Pediatric Oncology.

The study team conducted a systematic review of pediatric and adolescent palliative cancer care literature from 1995 to 2015 using four databases to inform development of a palliative care psychosocial standard. A total of 209 papers were reviewed with inclusion of 73 papers for final synthesis. Revealed topics of urgent consideration include the following: symptom assessment and intervention, direct patient report, effective communication, and shared decision-making. Standardization of palliative care assessments and interventions in pediatric oncology has the potential to foster improved quality of care across the cancer trajectory for children and adolescents with cancer and their family members.

Caregiving demands and well-being in parents of children treated with outpatient or inpatient methotrexate infusion: a report from the children's oncology group.

Parent well-being is affected by their child's oncology treatment regimen and associated caregiving demand. Parental caregiving demands and well-being were evaluated in 161 parents from 47 sites whose child was randomized to receive either a 4-hour (outpatient) or 24-hour (inpatient) methotrexate infusion during consolidation treatment for acute lymphoblastic leukemia. A majority of patients randomized to the 4-hour infusion (66.3%) received the infusion as an inpatient. The most frequently reported reasons for this were lack of an adequate outpatient facility (53.6%) and physician preference (25.0%). There were no differences between caregiving demand and well-being total scores by either randomized or actual infusion location with one exception: well-being scale fatigue scores were significantly greater (P=0.001) for parents whose child received the outpatient infusion. Mean total well-being scores for both the 24-hour arm (µ=42.6; SD 16.2) and the 4-hour arm (µ=40.6; SD 14.1) were elevated compared to healthy control populations. Additional research is needed to characterize impact of treatment setting on parental caregiving demand and well-being during their child's treatment for acute lymphoblastic leukemia. Investigators examining impact of treatment location in randomized clinical trials need to control for institutional variability in outpatient care delivery resources.

Thematic expansion: A new strategy for theory development.

We developed and applied metasynthesis methods to expand previously reported thematic descriptions of parents' internal definition of "being a good parent to my seriously ill child" as part of a larger study to examine parenting of children with serious illness. Our systematic approach included: literature search, purposeful selection of grounded theories regarding parenting a seriously ill child, study summaries, mapping evidence of good parent themes onto structural elements of grounded theory, cross-study comparisons, and theoretical memoing to summarize analytic insights. Twenty-five grounded theory studies from 32 reviewed reports reflected multiple conditions (n=5), countries (n=10) and family members (n=386 families). We report a worked example of the processes used to extend the original good parent themes and detail our processes through one good parent theme. The methods we describe are a promising approach to extend thematic analysis findings and advance thematic expansions toward development of more formal theoretical syntheses.

Healthy Habits Questionnaire Feasibility and Utility for High-Risk Children.

The American Academy of Pediatrics provides guidance for pediatric primary care providers to promote healthy weight during childhood. Screening questions on diet and activity habits can help provider assessment and assist counseling for targeted behavior change. We implemented the parent completed, 10-item 5210 Healthy Habits Questionnaire (Ages 2-9 year) in our primary care practice serving low-income minority children with high rates of overweight and obesity. Adherence to the intervention protocol was high, and providers found the content and method of assessment useful for their counseling of individual patients. The aggregate Healthy Habits Questionnaire data provided a snapshot of the health habits in our local clinic population of children, prompting greater awareness for providers and informing their patient care.

The National Cancer Institute Clinical Trials Planning Meeting for Prevention and Treatment of Chemotherapy-Induced Peripheral Neuropathy.

Although recent scientific advances have improved our understanding of basic biological mechanisms underlying chemotherapy-induced peripheral neuropathy (CIPN), few interventions are available to prevent or treat CIPN. Although some biological targets from preclinical studies show promise in nonhuman animal models, few targets have been translated to successful clinical trials. To address this problem, the National Cancer Institute's Symptom Management and Health-Related Quality of Life Steering Committee convened a meeting of experts in the CIPN and oncology symptom management fields to participate in a Clinical Trials Planning Meeting (CTPM). Investigators presented data from preclinical and translational studies for possible CIPN interventions; these were evaluated for readiness of randomized clinical trial testing by experts, and recommendations were provided. Breakout sessions were convened to discuss and develop future studies. The CTPM experts concluded that there is compelling evidence to move forward with selected pharmacological and nonpharmacological clinical trials for the prevention and treatment of CIPN. Several key feasibility issues need to be addressed, however. These include identification of optimal outcome measures to define the CIPN phenotype, establishment of parameters that guide the evaluation of clinically meaningful effects, and adoption of approaches for inclusion of translational and biomarker and/or genetic measures. The results of the CTPM provide support for conducting clinical trials that include both pharmacological and nonpharmacological approaches, alone or in combination, with biomarkers, genetics, or other measures designed to inform underlying CIPN mechanisms. Several working groups were formed to design rigorous CIPN clinical trials, the results of which are ongoing.

Children's Oncology Group nursing research framework.

OBJECTIVES: To describe the development and application of an organizing research framework to guide Children's Oncology Group (COG) nursing research. DATA SOURCES: Research articles, reports and meeting minutes. CONCLUSION: An organizing research framework helps to outline research focus and articulate the scientific knowledge being produced by nurses in the pediatric cooperative group. IMPLICATIONS FOR NURSING PRACTICE: The use of a COG nursing research organizing framework can facilitate the clinical nurse's understanding of how children and families sustain or regain optimal health when faced with a pediatric cancer diagnosis through interventions designed to promote individual and family resilience.

Making the right decision for my child with cancer: the parental imperative.

BACKGROUND: Making major treatment decisions with life-altering consequences is a significant challenge faced by parents of children with cancer. The unique experience of parents is not well represented in the growing literature on cancer treatment decision making (TDM). OBJECTIVE: The objective of this study was to describe the process of parents making major treatment decisions for their children with cancer. METHODS: Using grounded theory methods, we interviewed 15 parents of 13 children with cancer facing major treatment decisions. RESULTS: Parents' determination to make the right decision was both a demanding responsibility and a natural extension of the parental role. Everything parents encountered and undertook during the TDM process was in the service of making the right decision for their child. All parents expressed conviction that they had made the right decision, but conviction was tempered by doubts triggered by the pervasive uncertainty of the childhood cancer experience. Parents described limited TDM participation by extended family members and the affected children themselves, asserting their primary responsibility to act as their child's surrogate in partnership with the child's medical team. CONCLUSIONS: Making the right decision for one's child under challenging conditions is an extension of the parental obligation to act in the child's best interest and a responsibility that parents claim as their own. IMPLICATIONS FOR PRACTICE: The findings from this study can serve as the foundation for future studies to refine the conceptualization of TDM in childhood cancer, which will in turn ground the development and evaluation of interventions to support parents in their critical TDM role.

A symptom checklist for children with cancer: the Therapy-Related Symptom Checklist-Children.

BACKGROUND: Symptom monitoring and alleviation are basic to the care of children and adolescents with cancer. A symptom checklist helps facilitate this process. OBJECTIVES: The primary objective of this study was to calibrate a child-friendly, clinically usable checklist capturing symptom occurrence and severity; a secondary objective was to examine age group differences: 5 to 11 years (n = 222) and 12 to 17 years (n = 163) and sex differences: males (54%) and females (46%), and correlate symptom severity, functional status, and quality of life. METHODS: Three hundred eighty-five children/adolescents at 5 university-affiliated outpatient oncology clinics: central, western, eastern, southeastern United States. Diagnoses were acute lymphoblastic leukemia (45%), solid tumors (14%), nervous system tumors (18%), and others (23%). Principal component factor analysis, confirmatory factor analysis, correlational statistics, t test, Wilcoxon test were performed. RESULTS: (a) Robust 30-item checklist, 7 factors; (b) 14 of 30 symptoms reported by at least 40% of patients. Top 5 are feeling sluggish (77%), nausea (72%), appetite loss (66%), irritable (61%), and vomiting (54%). (c) Sixteen of 30 symptoms reported at severity 2 or greater: "quite a bit." (d) Therapy-Related Symptom Checklist-Children (TRSC-C) scores are as follows: range, 0 to 89; mean, 25.14 (SD, 18.68). (e) Cronbach α = .9106. (f) Older children reported greater symptom severities: TRSC-C (t = 2.73, P = .003). (g) There were no sex differences on the TRSC-C total score. (h) Lansky correlations with TRSC-C (r = -0.32; P = .02); factors: nutrition related (r = -0.36; P = .05); oropharyngeal (r = -0.51; P = .0002); and respiratory (r = - 0.25; P = .06). (i) Pediatric Quality of Life Inventory correlation with TRSC-C (r = -0.68; P = .0001). CONCLUSION: The new TRSC-C has good measurement properties and is ready for use in clinics and research. IMPLICATIONS FOR PRACTICE: Use of the TRSC-C is consistent with guidelines emphasizing self-report of patient symptoms, shared patient decision making, and improved communications among patients, clinicians, and significant others.

Feasibility, acceptability, and usability of web-based data collection in parents of children with cancer.

PURPOSE/OBJECTIVES: To determine the feasibility of Web-based, multisite data collection using electronic instruments and the feasibility, acceptability, and usability of that data collection method to parents of children with cancer. DESIGN: Prototype development and feasibility study. SETTING: Three Children's Oncology Group centers in the United States. SAMPLE: 20 parents of children with cancer who made a treatment decision within the previous six months. METHODS: Eight instruments were translated from print to electronic format and deployed using a secure Web-based server. Parents completed printed versions of two of the instruments to assess comparability of the two formats. A post-survey interview focused on parents' computer experiences and the acceptability and ease of use of the instruments. MAIN RESEARCH VARIABLES: Time to orient parent to Web site, time to complete instruments, investigators' field notes, and postsurvey questionnaire. FINDINGS: Eighty percent of parents preferred the Web-based data collection and found it at least as easy as completing paper-and-pencil instruments. All parents, regardless of their computer expertise, were comfortable with the electronic data collection system. Statistical analysis demonstrated no evidence of systematic or clinically significant bias. CONCLUSIONS: The Web-based data collection was feasible, reliable, and preferred by most study participants. The authors will use this strategy in future intervention trials of parents making treatment decisions. IMPLICATIONS FOR NURSING: Web-based data entry is feasible and acceptable to parents of children with cancer. Future multicenter collaborative studies should develop and test nursing interventions to support parents making treatment decisions.

Parents of children with cancer: factors influencing their treatment decision making roles.

This study examined the factors that parents identified as influencing their role in treatment decision making (TDM) for their child with cancer. Content analysis of qualitative data from semistructured interviews with 36 parents as part of a mixed-methods study revealed numerous themes related to parents' TDM roles. Factors that were frequently identified included: relationship with the physician, nature of communication, trust in the physician, parents' and physician's knowledge and experience, and importance of parental role. Parents acknowledged a strong sense of responsibility and feeling of "ownership" of their child. Parents initially lacked knowledge and experience, but acquiring these over time contributed to a more active participation in TDM.

The care of my child with cancer: parents' perceptions of caregiving demands.

Parents are actively involved in the direct care of their ill child receiving cancer treatment by providing and monitoring therapy and by managing symptoms related to the therapy or to the disease itself. Little is known about parents' perception of what helps or hinders them with their caregiving responsibilities or what effect the caregiving role has on the parent. In this descriptive, exploratory study, 151 parents responded to one or more of six open-ended questions that were part of the newly developed instrument, Care of My Child with Cancer. The 1,280 responses were analyzed using a semantic content analysis technique. The most frequently reported effect on parental caregiving involved negative physical and emotional health. One parent responded, "You feel like you lose all control over your life. It's no longer your own." The most desired forms of assistance with the caregiving role were periodic relief from direct caregiving, ongoing assistance with household responsibilities, and different forms of conveniences that could save time and energy. Two types of actual assistance found to be most helpful by parental caregivers included timely education about their child's health status from health care providers and emotional support from family members, friends, and others. These study findings provide the basis for future interventions that may diminish the effect that caregiving demands place on parents of children with cancer.