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Background: Primary objective was to determine if a patient informational brochure describing potentially useful strategies could help manage specific taste changes. Secondary objective was to describe the specific strategies used and whether the strategies were perceived as being helpful., Procedure: This single-center study included pediatric patients with cancer or hematopoietic cell transplant recipients receiving active treatment who experienced bothersome taste changes in the last month. Participants participated in baseline and follow-up interviews conducted 14-21 days apart. A brochure that listed 16 potentially helpful strategies was provided at baseline. At follow-up, we asked about brochure use and whether it helped. At both interviews, we asked about experienced taste changes, strategies used, and whether strategy helped., Results: Of 100 enrolled participants, different (87%) and bad (72%) taste were most common at baseline. Following the brochure intervention, statistically significant reductions were observed in food tasting different, bad, bland, bitter, sour, and metallic. For most strategies, the proportion of patients who used specific strategies or found them helpful was not significantly different between baseline and follow-up. However, "eating foods you like" was considered helpful in significantly more participants who used the strategy in follow-up (72 out of 89, 80.9%) compared with baseline (55 out of 95, 57.9%; p = .008). Between visits, 81.2% looked at the brochure. Among participants, 53.1% found the brochure helpful, very helpful, or extremely helpful., Conclusions: A brochure that offered strategies to manage changes in taste helped participants cope with them. Further research should evaluate the brochure using randomized and multicenter trials., (© 2024 Wiley Periodicals LLC.)

Objectives: Taste changes are common among paediatric patients receiving cancer treatments although specific descriptions and associations are uncertain. Primary objective was to describe the number of paediatric patients receiving cancer therapies who experienced taste changes, its impact on food intake and enjoyment of eating, and coping strategies., Methods: This was a cross-sectional study that included English-speaking paediatric patients aged 4-18 years with a diagnosis of cancer or haematopoietic stem cell transplantation recipients receiving active treatment. Using a structured interview, we asked participants about their experience with taste changes, impacts and coping strategies. The respondent was the paediatric patient., Results: We enrolled 108 patients; median age was 11 years (IQR 8-15). The taste changes reported yesterday or today were food tasting bland (34%), bad (31%), different (27%), bitter (25%), extreme (19%), metallic (15%) or sour (12%). Taste changes were associated with decreased food intake (31%) and decreased enjoyment in eating (25%) yesterday or today. The most common coping strategies were eating food they liked (42%), eating strong-tasting food (39%), drinking liquids (35%), brushing teeth (31%) and sucking on candy (25%). Factors significantly associated with food tasting bad were as follows: older age (p=0.003), shorter time since cancer diagnosis (p=0.027), nausea and vomiting (p=0.008) and mucositis (p=0.009)., Conclusions: Among paediatric patients receiving cancer treatments, taste changes were common and were associated with decreased food intake and enjoyment in eating. Common coping strategies were described. Reducing nausea, vomiting and mucositis may improve taste changes., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2023. No commercial re-use. See rights and permissions. Published by BMJ.)

In contrast to other Children's Oncology Group (COG) committees, the COG nursing discipline is unique in that it provides the infrastructure necessary for nurses to support COG clinical trials and implements a research agenda aimed at scientific discovery. This hybrid focus of the discipline reflects the varied roles and expertise within pediatric oncology clinical trials nursing that encompass clinical care, leadership, and research. Nurses are broadly represented across COG disease, domain, and administrative committees, and are assigned to all clinically focused protocols. Equally important is the provision of clinical trials-specific education and training for nurses caring for patients on COG trials. Nurses involved in the discipline's evidence-based practice initiative have published a wide array of systematic reviews on topics of clinical importance to the discipline. Nurses also develop and lead research studies within COG, including stand-alone studies and aims embedded in disease/ treatment trials. Additionally, the nursing discipline is charged with responsibility for developing patient/family educational resources within COG. Looking to the future, the nursing discipline will continue to support COG clinical trials through a multifaceted approach, with a particular focus on patient-reported outcomes and health equity/disparities, and development of interventions to better understand and address illness-related distress in children with cancer., (© 2023 Wiley Periodicals LLC.)

Background: Parents of children newly diagnosed with cancer require specialized knowledge and skills in order to safely care for their children at home. The Children's Oncology Group (COG) developed expert consensus recommendations to guide new diagnosis education; however, these recommendations have not been empirically tested. Methods: We used a sequential two-cohort study design to test a nurse-led Structured Discharge Teaching Intervention (SDTI) that operationalizes the COG expert recommendations in the setting of a tertiary children's hospital. Outcomes included parent Readiness for Hospital Discharge Scale (RHDS); Quality of Discharge Teaching Scale (QDTS); Post-Discharge Coping Difficulty (PDCD); Nurse Satisfaction; and post-discharge unplanned healthcare utilization. Results: The process for discharge education changed significantly before and after implementation of the SDTI, with significantly fewer instances of one-day discharge teaching, and higher involvement of staff nurses in teaching. Overall, parental RHDS, QDTS, and PDCD scores were similar in the unintervened and intervened cohorts. Almost 60% of patients had unplanned healthcare encounters during the first 30 days following their initial hospital discharge. Overall nurse satisfaction with the quality and process of discharge education significantly increased post-intervention. Discussion: Although the structure for and process of delivering discharge education changed significantly with implementation of the SDTI, parent RHDS and QDTS scores remained uniformly high and PDCD scores and non-preventable unplanned healthcare utilization remained similar, while nurse satisfaction with the quality and process of discharge education significantly improved, suggesting that further testing of the SDTI across diverse pediatric oncology settings is warranted.

Background: Parents of children newly diagnosed with cancer are required to understand a significant amount of new information during a time of distress. Parents of children with cancer have expressed that concise information with visual cues, which can be repeated, positively influences their ability to understand., Objectives: The primary objective was to develop 2 concise, video-based education modules that are understandable to parents of children with cancer. A secondary objective was to determine feasibility of a future trial evaluating efficacy of video-based education., Methods: The study was conducted in phases: script development, video creation, and feasibility testing. Topics were "managing fever at home" and "giving medications at home." Content was developed by pediatric oncology experts and turned into video scripts. Scripts were refined through cognitive interviews with parents of children with cancer. Feasibility testing included recruitment of 20 parents of a child given a diagnosis of cancer within 4 weeks. Parents watched both videos and answered questions that assessed their understanding and perceived confidence., Results: Final scripts were reviewed by 25 participants. Feasibility was achieved with 20 parents recruited within 7 weeks, with 100% watching both videos and answering knowledge and confidence questions., Conclusions: We successfully developed 2 educational videos for parents of children newly diagnosed with cancer. A future trial to test the efficacy of video-based education modules is feasible., Implications to Practice: Delivering quality education to parents of children newly diagnosed with cancer can decrease parental distress and improve safe care during a high-risk time for treatment-related morbidity and mortality., Competing Interests: The authors have no conflicts of interest to disclose., (Copyright © 2021 Wolters Kluwer Health, Inc. All rights reserved.)

Purpose: Change in hunger is a common and bothersome symptom among pediatric patients receiving cancer treatments. Objectives were to describe how children and adolescents receiving cancer treatments experience changes in hunger, factors associated with both increases and decreases in hunger, and coping strategies used by these patients., Methods: We enrolled children and adolescents 4-18 years of age with cancer or hematopoietic stem cell transplantation (HSCT) recipients who were actively receiving treatment or who had completed therapy. Using a single, qualitative, semi-structured interview, we asked participants about the experience of increases or decreases in hunger, including characteristics of the change and identified coping strategies., Results: There were 50 children enrolled; 25 (50%) were 4-10 years of age and 33 (66%) were boys. Most often, patients associated an increase in hunger with corticosteroid administration, while other treatments, accompanying symptoms, inactivity, and the hospital environment were associated with a decrease in hunger. Many reported that no coping strategies were successful. For those who did report successful strategies to manage an increase in hunger, these included sleep and having food available. Strategies used to manage a decrease in hunger included anti-emetic medications, increased caloric intake, varied food choices, encouragement to eat, scheduling or tracking of meals, and physical activity., Conclusions: Both increases and decreases in hunger were commonly described. Some coping strategies were reported to be successful. Further research should identify and test interventions to manage changes in hunger in pediatric cancer patients.

Background: Recognizing and addressing illness-related distress has long been a priority for pediatric oncology nurses and the Children's Oncology Group. Although symptoms are known to be highly prevalent during treatment for childhood cancer, there is currently no guidance for how often symptoms should be assessed, which symptoms should be prioritized for assessment, and how the data should be collected. Methods : The Nursing Discipline, within Children's Oncology Group, hosted a one-day Interprofessional seminar titled "Symptom Assessment During Childhood Cancer Treatment: State of the Science Symposium." Following the symposium, an expert panel was assembled to review all available evidence, including information presented and collected during the symposium. Consensus-building discussions were held to identify common themes and to produce recommendations for clinical practice. Results: Four recommendations emerged including (1) the identification of priority "core" symptoms for assessment; (2) inclusion of the child's voice through self-report, when possible; (3) consistent documentation and communication of symptom assessment results; and (4) implementation of patient/family education related to symptoms. Discussion: Symptom recognition, through appropriate assessment, is the first step in symptom management. The goal for developing and sharing these recommendations is to promote consistent and comparable clinical practice across institutions in regard to symptom assessment during childhood cancer therapy. Integration of these recommendations will set the stage for future studies related to the frequency of symptoms across disease groups, projection of anticipated symptom trajectories, development of evidence-based teaching tools for common symptoms, and evaluation of patient outcomes with enhanced symptom assessment and management.

Background: Fatigue is a major problem in children with cancer. The objective was to examine the feasibility of performing a clinical trial of homeopathic treatment for fatigue in children receiving chemotherapy., Materials: This was a single-institution, open-label, pilot study. Children 2 to 18 years old, diagnosed with cancer, and receiving chemotherapy were eligible. Participants were given individualized homeopathic treatment for a maximum of 14 days. In-home or clinic assessments were conducted up to 3 times weekly. Feasibility was defined as the ability to recruit and administer homeopathy to 10 participants within 1 year. Fatigue was measured using the Symptom Distress Scale daily and the PedsQL Multidimensional Fatigue Module weekly., Results: Between April 2012 and April 2014, 155 potential participants were identified. There were 45 eligible and contacted patients; 36 declined participation, 30 because they were not interested; 9 agreed to participate, but 1 participant withdrew prior to treatment initiation. Median length of homeopathic treatment was 10.5 (range = 6 to 14) days. All parents found homeopathic treatment to be easy or very easy to follow., Conclusions: Trials of individualized homeopathy for fatigue reduction in pediatric cancer are not feasible in this context; lack of interest was a primary reason. Alternative approaches to evaluating homeopathy efficacy are needed., (© The Author(s) 2015.)

Background: We previously identified published scales for symptom assessment in pediatric cancer patients. The objectives of this study were to identify if any of these scales were suitable for use or adaptation as a self-report symptom screening tool, and if not, to begin the process of creating a new tool., Methods: A focus group of ten healthcare professionals with expertise in pediatric cancer symptom management and a patient advocate were convened. First, the group identified the optimal properties of a symptom screening tool for pediatric cancer patients. Next, the previously identified symptom assessment scales were evaluated against these properties. As none of the existing scales were adequate for symptom screening, a nominal group technique was used to identify the most important symptoms for inclusion in a new symptom screening tool., Results: Optimal properties of a symptom screening tool included minimal respondent burden, inclusion of 15 items or less, and inclusion of the most burdensome symptoms. None of the previously identified scales were adequate because they lacked content validity and were too long or would be too hard for children to understand. Nominal group technique identified 15 items to be included; an initial draft was developed and named the Symptom Screening in Pediatrics (SSPedi) Tool., Conclusions: This study identified the lack of an appropriate symptom screening tool for use by pediatric cancer patients. A preliminary version of SSPedi was developed. Subsequent work will ensure that it is understandable by children and evaluate its psychometric properties.

Context: Despite the recognized distressing symptom of fatigue in children with cancer, little information is available to assist in the selection of an instrument to be used to measure fatigue., Objectives: The objectives of this study were to 1) describe the instruments that have been used to measure cancer-related fatigue in children and adolescents and 2) summarize the psychometric properties of the most commonly used instruments used to measure fatigue in children and adolescents with cancer., Methods: Five major electronic databases were systematically searched for studies using a fatigue measurement scale in a population of children or adolescents with cancer. Fatigue scales used in those studies were included in the review., Results: From a total of 1753 articles, 25 were included. We identified two main fatigue measurement instruments used in a pediatric oncology population: 1) the Fatigue Scale-Child/Fatigue Scale-Adolescent and the proxy report versions for parents and staff and 2) the PedsQL™ Multidimensional Fatigue Scale. These two scales show similar attributes with reasonably good internal consistency and responsiveness., Conclusion: Either the Fatigue Scale or PedsQL Multidimensional Fatigue Scale can be incorporated into clinical research. Future research should focus on identifying specific fatigue measures more suited to different purposes such as comparative trials or identification of high-risk groups., (Copyright © 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.)

Fatigue is one of the most common and distressing symptoms experienced by adolescents during and after treatment for cancer. The lack of reliable and valid instruments has prevented an accurate assessment of the trajectory of fatigue among adolescent oncology patients. The purposes of this study were to identify the items on the Fatigue Scale-Adolescent (FS-A) that distinguished adolescents with high fatigue and to identify the most sensitive and specific score ("cut score") in order to identify those in need of a fatigue intervention. Rasch methods were used to identify FS-A items that distinguished adolescents with high cancer-related fatigue, and results indicated that the 14-item FS-A could be reduced to 13 items. The 13-item FS-A was assessed for its psychometric properties, with application of the receiver operating characteristics curve analysis to the responses from 75 adolescents. The internal consistency coefficient was .87, and a 4-factor confirmatory analysis achieved good fit coefficients. The identified cut score was 31, with 66.6% sensitivity and 82.6% specificity; 16 (21.33%) of the patients scored 31 or higher. The 13-item FS-A has acceptable psychometric properties and is able to identify adolescent oncology patients with high fatigue.