Search

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.)

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.)

Objective: To describe the experiences and perspectives of parents of pediatric patients with acute lymphoblastic leukemia (ALL) regarding oral chemotherapy administration during maintenance therapy., Methods: English-speaking parents of patients 4 to <18 years who were receiving ALL maintenance oral chemotherapy were eligible to participate in this mixed methods study. Using semi-structured interviews, we asked participants how difficult they found oral chemotherapy administration. We also probed regarding barriers and facilitators of oral chemotherapy administration and strategies used to overcome challenges. Lastly, we asked participants for their advice to future parents giving oral chemotherapy to their children., Results: Twenty-three participants were interviewed. One-fifth of participants stated that oral chemotherapy administration at home was hard or very hard. Common factors influencing oral chemotherapy administration were product-related (e.g., formulation) and treatment-related adverse effects (e.g., nausea), lifestyle adjustment (e.g., fitting in with family schedule), and attitudes (e.g., onus of medication administration). Strategies to address oral chemotherapy administration included several administration techniques, scheduling of medication administration, and normalization of medication taking., Conclusions: Oral chemotherapy administration during ALL maintenance therapy was hard for some parents. Identification of these parents and discussion of strategies to facilitate adherence to oral chemotherapy regimens may optimize patient outcomes., (© 2021 Wiley Periodicals LLC.)

Background: Venous access device (VAD) occlusion from intraluminal thrombus is a common complication during childhood cancer treatment. Current practice at many institutions is to assess VAD position with a chest X-ray (CXR) prior to intraluminal administration of tissue plasminogen activator (tPA). We aimed to determine the utility of this practice., Procedure: A retrospective chart review of children with newly diagnosed cancer with a VAD, treated at The Hospital for Sick Children between 2010 and 2011, was performed. Episodes of line occlusion were identified both by reviewing patient CXRs for indication and identifying tPA doses dispensed. These episodes were reviewed to determine whether CXR findings resulted in management other than tPA. Cases in which the X-ray resulted in a change in management were further reviewed to determine whether administration of tPA could have resulted in potential patient harm., Results: A total of 330 patients with newly diagnosed cancer with VADs were identified. Eighty-five (25.8%) patients experienced 123 episodes of VAD occlusion. VAD occlusions occurred more frequently in patients with tunneled external central venous lines (16/39, 41.5%) and peripherally inserted central catheters (PICC) (27/73, 37.0%) versus PORT (42/216, 19.4%; P = 0.001). There were nine (8.1%) episodes of VAD occlusion evaluated with a CXR in which the findings led to a change in management other than administering tPA. In each case, multiple specialists independently concluded that administration of tPA would have been unlikely to cause patient harm., Conclusion: Routine CXRs prior to the administration of tPA for asymptomatic VAD occlusion can safely be omitted., (© 2016 Wiley Periodicals, Inc.)

Background: Not all children with acute lymphoblastic leukemia (ALL) were developing in a typical manner prior to diagnosis. Pre-existing developmental vulnerabilities (DV) may be related to long-term neuropsychological sequelae following ALL treatment, yet little is known about the prevalence or nature of prior DV in this population., Procedure: Children with newly diagnosed ALL aged 2-18 years (n = 115) were screened for DV by asking parents about the child's prior developmental history and with the Developmental Profile-3 (DP-3)., Results: Twenty-six participants (23% of total sample) screened positive for prior DV, with one or more of the following: delayed early motor and/or language milestones that required intervention (n = 17), prior diagnosis of Down syndrome (n = 3), prior diagnosis of autism spectrum disorder (n = 1), prior diagnosis of attention-deficit/hyperactivity disorder and/or learning disability (n = 6), or prior neurological conditions (n = 5)., Conclusions: A sizable proportion of children with newly diagnosed ALL have pre-morbid DV that could potentially make them more vulnerable to reduced educational opportunities during treatment and neurotoxic late effects following treatment. Identification of the subset of children with ALL and DV is essential to direct early interventions and to study their long-term outcomes., (© 2015 Wiley Periodicals, Inc.)