Journal of Pediatric Hematology-Oncology Nursing最新文献

BackgroundPediatric cancers cause significant morbidity and mortality among children in Tanzania. Chemotherapy remains the primary treatment, but it often leads to treatment-induced toxicities that necessitate supportive care medicines. This study assessed patient-reported concerns about access to supportive medicines and evaluated symptom management outcomes among children with cancer at a major referral hospital.MethodWe conducted a descriptive cross-sectional study over 6 months among children with cancer receiving chemotherapy at Bugando Medical Centre. Data on access to and utilization of supportive care medicines and symptom relief were collected through a semi-structured questionnaire, cleaned in Microsoft Excel 2019, and analyzed with STATA Version 15.ResultsAmong 120 participants (61 female, 59 male), access to supportive care medicines was poor for 68.33%. Utilization was high at 99.17%. Most patients (62.50%) reported good symptom resolution after using supportive care medicines, whereas 37.50% continued to experience disruptions to daily activities due to chemotherapy-induced toxicities.DiscussionFinancial difficulties and limited insurance coverage contributed to poor access to supportive medicines. Despite this, utilization was high and associated with symptomatic improvement for most participants. These findings suggest that improved financial support and availability of supportive medicines could enhance symptom-management outcomes for children with cancer in Tanzania.

Background: Sickle cell disease (SCD) is a genetic blood disorder in which sickled red blood cells cannot easily pass through the vasculature, leading to impaired tissue perfusion and oxygenation that can lead to vaso-occlusive pain, stroke, and multiorgan and tissue damage. Scientists have now developed genetic approaches to treating SCD with a curative intent. The purpose of this article is to inform the reader of the current state of SCD gene therapy and an institution's experience and outcomes with this therapy.

Method: Gene therapy uses the patient's stem cells to create a patient-specific genetically modified product to correct or replace the genetic mutation causing the SCD. The two genetic treatment approaches to SCD gene therapy are gene addition/gene transfer and gene editing. Patients experience a multistep, complex process to undergo this treatment, requiring close communication between the patient and the interdisciplinary teams at the patient's home treatment center and gene therapy treatment site. Phase I, II, and III clinical trials have been completed or are ongoing worldwide.

Results: Based on clinical trial findings, in 2023, the Food and Drug Administration approved two gene therapy products. At one treatment site, 17 patients have completed treatment on two clinical trials, and all are alive and stable without serious adverse events related to the gene therapy product.

Discussion: As gene therapy treatments continue to develop as an SCD treatment option, nurses play an important role in educating patients and their families about the therapy. Patients undergoing gene therapy need close nursing care coordination and expert supportive care during all steps of the treatment process, including follow-up.

BackgroundChildhood cancer often entails long-term treatment, with various side effects that affect the nutritional status of patients. Nurses play a pivotal role in assessing and promoting nutritional support. Therefore, we aimed to explore the experiences of clinical nurses assessing and promoting optimal nutrition supportive care during pediatric cancer treatment.MethodFour focus groups involving 22 clinical nurses were conducted at the four tertiary hospitals in Norway treating children with cancer. Analysis was guided by Braun and Clarke's reflexive thematic approach. The study adhered to the consolidated criteria for reporting qualitative research.ResultsFour themes were created. Nurses employed a holistic approach to plan and integrate nutritional care in collaboration with families, dietitians, doctors, and other professionals. Barriers in nutritional oncology care identified were treatment side effects, time constraints, and inadequate use of guidelines. Nurses experienced difficulties discussing overweight conditions with patients.DiscussionOur study offers insight into the importance of close collaboration with every single family, thus promoting family-centered care for assessing and promoting optimal nutritional status during treatment for pediatric oncology. Nurses must have a broad perspective on what constitutes optimal nutritional care. Using guidelines in a systematic manner is crucial to prevent malnutrition during childhood cancer treatment.

BackgroundIneffective interpretation leads to delayed diagnoses and treatment plans and patient dissatisfaction.MethodA guideline was developed for a center for cancer and blood disorders unit to improve interpretation services for patients and families with non-English language preference (NELP), signage was installed to adequately identify interpretation needs, video remote interpreter (VRI) devices were purchased for the unit, and patients and families were prompted daily to monitor if interpretation services had been used. Adherence to interpreter use was tracked via documentation in the electronic health record.ResultsThere was a 59% increase in interpreter use for patients and families with NELP. The National Research Corporation Health Discharge Survey conducted for patients with NELP demonstrated a 6% improvement in questions regarding communication and input in their care while in the hospital.DiscussionThe continual increase in documentation of interpreter use for patients with NELP over a 12-month period alludes to the sustainability of this project. The multipronged approach allowed for patients with NELP to have increased access and contact with interpreters, which translated to improved patient and caregiver perception of communication with their medical team and increased input in their medical care.

BackgroundThe purpose of this study was to explore healthcare utilization among children with sickle cell disease (SCD) during the COVID-19 pandemic using a concurrent mixed-methods study design.Method and SampleTrends in healthcare encounters were examined across the institutional SCD population from September 2019 through February 2021. A convenience sample of children with SCD (8-17 years of age) and their parent/caregiver completed the COVID-19 Exposure and Family Impact Scale and a semistructured interview. Patients were eligible if they had a history of high hospital utilization (HHU; ≥5 admissions in 2019) or moderate HHU (MODHU; ≥2 ED visits or 2-4 admissions in 2019). Differences in outcomes by HHU status were assessed using Fisher's exact and Wilcoxon rank sum tests. Qualitative data were analyzed using thematic analysis.ResultsAcross the institutional SCD population (N = 2,153), healthcare encounters decreased in the early pandemic, returning close to baseline mid-pandemic. The sample (N = 16) was 75% (n = 12) male, 50% (n = 8) HHU, and median age 13.1 years; all parent participants were mothers. The MODHU group reported a more negative impact of COVID-19 on family functioning compared with the HHU group (p = .03), while distress was similarly high across both groups. Parents believed reduced exposure to infection, greater control over environmental triggers, and management of pain at home resulted in fewer healthcare visits. Parents described child distress as related to social isolation and virtual school.ConclusionWith reduced exposure to illness triggers, healthcare utilization for children with SCD decreased during the pandemic, although social isolation was associated with distress.

BackgroundStudies show that in families with a child diagnosed with cancer, higher parental stress is associated with greater psychosocial difficulties in children. This study examined whether children with cancer and their parents can maintain a high positivity ratio (more positive than negative emotions) during illness, highlighting the mediating role of parental illness perception in the relationship between hope, social support, and positivity ratio in both parents and children.MethodThe study included 108 parent-child dyads (N = 216), where children (ages 7-18) were undergoing cancer treatment. Participants completed self-reports on hope, social support, and positive/negative affect. Parents also reported their perceived impact of the illness. Descriptive statistics and Pearson correlations were performed using IBM SPSS Statistics (Version 29). The theoretical research model was analyzed through structural equation modeling using Mplus (Version 8.6).ResultsDespite the challenges of illness, both children and their parents were found to maintain a high positivity ratio. Path analysis indicated that parents' perception of illness impact mediated the relationship between parents' social support and hope and the positivity ratio of both parents and children. Additionally, intergenerational correlations were found for social support and between parents' illness perceptions and children's positivity ratio.DiscussionThese findings highlight the crucial role of positive emotions during times of distress and offer valuable insights for developing targeted intervention programs aimed at supporting emotional resilience in children with cancer and their parents.

BackgroundThe transition from hospital to home care in pediatric hematology/oncology brings important benefits for families, but it can also generate anxiety regarding the management of symptoms at home. Although hospitals offer 24/7 telephone support, there is currently no standardized telephone triage tool in Italy for pediatric hematology/oncology, resulting in variability in inconsistent practices. This study aims to carry out the linguistic validation in Italian of the "Oncology/Hematology Telephone Triage Toolkit for Children and Young People V2 (2020)," a tool designed to standardize and improve the telephone triage process.MethodAfter obtaining approval from the tool's authors, the linguistic validation process was developed in 10 steps, according to international guidelines: After forward and backward translation, a preliminary version was created and evaluated through the Item and Scale Content Validity Indices to obtain an Italian version of the tool.ResultsThe working group of native-speaking professionals and a panel of nine experts from various Italian hematology and oncology institutions reviewed and approved the translation, achieving item content validity scores between 0.8 and 1 and scale content validity scores between 0.88 and 1. Some linguistic adjustments were made to adapt terms to the Italian context while maintaining the original meaning. The final Italian version preserved the original meaning and was deemed conceptually equivalent to the source tool.DiscussionA validated methodology in the translation and validation process successfully adapted the tool to the Italian context, maintaining its content and design. The final Italian version is now ready for usability testing.

IntroductionPediatric tumors pose significant morbidity and mortality risks. Clinical deterioration is recurrent, requiring timely interventions. Pediatric Early Warning Score (PEWS) is crucial for early recognition and timely intervention, improving patient prognosis. This study evaluates the predictive accuracy of major PEWS in pediatric hemato-oncological patients for identifying early recognition of clinical deterioration and predicting unplanned pediatric intensive care unit (PICU) transfers.MethodA scoping review identifying primary studies published between 2013 and 2023 on PEWS in pediatric hemato-oncological patients was performed. Searches were conducted in PubMed, CINAHL, Scopus, and Web of Science. Inclusion criteria were English-language studies evaluating PEWS's impact on recognizing clinical deterioration and unplanned PICU transfers.ResultsOut of 3,084 studies initially identified, 7 were included in the review. Bedside Pediatric Early Warning System (Bedside PEWS), Modified Bedside PEWS, Children's Hospital Early Warning Score (CHEWS), and Modified Brighton Pediatric Early Warning Score (Brighton PEWS) showed good predictive ability in detecting clinical deterioration. The area under the receiver operating characteristic curve was 0.93 for Bedside PEWS, 0.95 for CHEWS, and 0.91 for Modified Brighton PEWS, indicating high predictive accuracy. Increased scores within 24 hr before a critical event predicted the need for unplanned PICU transfer.ConclusionWhile PEWS are essential for early identification of clinical deterioration in pediatric patients with hematological and oncological conditions, these systems show promising predictive capability. Further large-scale, prospective, and comparative research is needed to validate these findings across different population conditions and treatments, allowing for an evolution of our understanding in this field.

BackgroundNon-English language preference (NELP) is a major barrier to accessing and navigating the U.S. health care system and exacerbates health disparities. Patient family advocates historically serve as health educators, cultural liaisons, and system navigators. A Spanish NELP advocate has worked at a large pediatric hematology and oncology program for several years, but the impact and specific tasks of the role had not been examined.MethodAn evaluation process was developed to (a) examine the role's potential impact on Spanish NELP families' enrollment in treatment studies compared to non-Spanish NELP families; (b) review patient experience survey responses; and (c) compare survivorship data for children with cancer from Latino, White, and non-Latino families of color.ResultsSpanish NELP families enrolled in research studies more frequently than non-Spanish NELP families and refused study enrollment the least. Spanish NELP families had higher survey response rates but were less satisfied. Latino children with cancer treated at the health system had lower 5-year relative survival compared to their White peers locally and nationally, but Latino children with leukemia had better relative survival than their national peers.DiscussionThe high enrollment in research studies and higher than national leukemia survival rates suggests that the advocate may contribute to outcomes, but more insight into patient experience and relative survival rates of Latino children is warranted. Expanding the number of advocates with updated position qualifications, enhancing advocate documentation, adding reimbursement potential, and improving compensation are recommendations to further develop the role.

Background: Cancer clinical trials are critical to advancing pediatric oncology care, but participation varies across age and sociodemographic groups. Understanding decision-making factors influencing pediatric and adolescent/young adult (AYA) participation is essential to addressing these disparities. This integrative review synthesizes qualitative studies to explore decision-making factors affecting participation in cancer clinical trials, identify gaps, and propose strategies to promote equitable involvement. Method: Using Whittemore and Knafl's integrative review methodology, comprehensive searches were conducted in PubMed, Scopus, CINAHL, Medline, and Web of Science, with additional studies identified through ancestral searching. Included studies were qualitative or mixed-methods, U.S.-based, and published from 2010 to 2024. Methodological quality was assessed using the Critical Appraisal Skills Programme (CASP) checklist, and thematic patterns were analyzed through constant comparison and qualitative synthesis tools. Results: Seven studies met inclusion criteria. Systemic, interpersonal, and individual factors were identified as influential in decision-making. Key themes influencing participation included finances and logistics, communication, relationships, role responsibilities, emotional distress, and perceived benefit. Discussion: Financial burdens, logistical challenges, and communication barriers emerge as major actionable obstacles. Expanding financial assistance programs, decentralizing trials, and implementing structured communication tools can improve access and support informed decision-making. Future research should explore the experiences of patients who were never offered a trial and assess the impact of financial and logistical support interventions to develop more equitable and effective enrollment and outreach strategies. Addressing these barriers through targeted policy and practice changes can create a more accessible clinical trial landscape for pediatric and AYA patients with cancer.