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Item 1340. Yield of Repeat Blood Cultures beyond 48 Hours after Negative Initial Cultures in Patients Hospitalized on a Pediatric Hematology/Oncology Unit(Oxford University Press, 2022-12-15) Prather, Cassandra S.; Alali, Muayad; Graduate Medical Education, School of MedicineBackground: Repeat blood cultures (BCxs) beyond 48 hours are often obtained despite negative initial BCxs in hospitalized pediatric hematology/oncology patients. This study seeks to determine the yield of repeat BCxs after negative initial cultures in these patients and to characterize new positive BCxs beyond 48 hours and the clinical contexts in which they were obtained. Methods: A retrospective review utilizing MedMined Inc. Data Mining Surveillance database was conducted on all BCxs obtained on hospitalized patients on the pediatric hematology/oncology unit at Riley Hospital for Children in Indianapolis, IN from January 2015 to February 2021. Exclusion criteria are shown in Fig. 1. Patient episodes in which a new pathogen (or commensal treated by the primary team as a pathogen) was identified on a repeat BCx more than 48 hours after negative initial BCxs were further investigated via electronic medical record review. Results: A total of 1,362 BCx sets were obtained beyond 48 hours in 792 patient hospitalizations, resulting in 303 positive BCxs (Fig. 2). Of these positive cultures, 193 were the same pathogen cultured on day 0 and 74 were contaminant cultures (in 4.0% (23/573) of patient hospitalizations without a positive BCx before 48 hours). Only 36 (2.6%) of positive BCxs beyond 48 hours were determined to be new pathogens, or commensals treated as pathogens, that were not cultured before 48 hours, corresponding to seven patient hospitalizations (1.2% (7/573) of patient hospitalizations without a positive BCx before 48 hours). The majority (6/7) of these patients were neutropenic and on broad spectrum antibiotics when the new positive BCxs were obtained. Fever pattern was prolonged in one patient and recurrent in six. No deaths occurred in these seven patients. All patients with new, true pathogens on BCxs beyond 48 hours (n=5) were either hemodynamically unstable (n=3) or had clinical changes (n=2, mucositis, diarrhea) the day the new positive BCx was drawn. Conclusion: The yield of repeat BCxs beyond 48 hours in hospitalized pediatric hematology/oncology patients with negative initial BCxs is low, while the associated costs are high. Repeat BCxs beyond 48 hours after negative initial cultures need not be obtained in febrile patients that remain hemodynamically stable and without clinical changes.Item Advice to Clinicians on Communication from Adolescents and Young Adults with Cancer and Parents of Children with Cancer(MDPI, 2022-12-21) Srinivas, Meghana; Kaye, Erica C.; Blazin, Lindsay J.; Baker, Justin N.; Mack, Jennifer W.; DuBois, James M.; Sisk, Bryan A.; Pediatrics, School of MedicineEffective communication is integral to patient and family-centered care in pediatric and adolescent and young adult (AYA) oncology and improving healthcare delivery and outcomes. There is limited knowledge about whether AYAs and parents have similar communication preferences and needs. By eliciting and comparing communication advice from AYAs and parents, we can identify salient guidance for how clinicians can better communicate. We performed secondary analysis of semi-structured interviews from 2 qualitative communication studies. In one study, 80 parents of children with cancer during treatment, survivorship, or bereavement were interviewed. In the second study, AYAs with cancer during treatment or survivorship were interviewed. We asked AYAs and parents to provide communication advice for oncology clinicians. Using thematic analysis, we identified categories of advice related to three overarching themes: interpersonal relationships, informational preferences, and delivery of treatment, resources, and medical care. AYAs and parents provided similar advice about the need for compassion, strong connections, hopefulness, commitment, and transparent honesty However, AYAs placed additional emphasis on clinicians maintaining a calm demeanor.Item Clinical and Genetic Risk Factors for Radiation-Associated Ototoxicity: A Report from the Childhood Cancer Survivor Study and the St. Jude Lifetime Cohort(Wiley, 2021) Trendowski, Matthew R.; Baedke, Jessica L.; Sapkota, Yadav; Travis, Lois B.; Zhang, Xindi; El Charif, Omar; Wheeler, Heather E.; Leisenring, Wendy M.; Robison, Leslie L.; Hudson, Melissa M.; Morton, Lindsay M.; Oeffinger, Kevin C.; Howell, Rebecca M.; Armstrong, Gregory T.; Bhatia, Smita; Dolan, M. Eileen; Epidemiology, School of Public HealthBackground: Cranial radiation therapy (CRT) is associated with ototoxicity, which manifests as hearing loss and tinnitus. The authors sought to identify clinical determinants and genetic risk factors for ototoxicity among adult survivors of pediatric cancer treated with CRT. Methods: Logistic regression evaluated associations of tinnitus (n = 1991) and hearing loss (n = 2198) with nongenetic risk factors and comorbidities among CRT-treated survivors in the Childhood Cancer Survivor Study. Genome-wide association studies (GWASs) of CRT-related tinnitus and hearing loss were also performed. Results: Males were more likely to report CRT-related tinnitus (9.4% vs 5.4%; P = 5.1 × 10-4 ) and hearing loss (14.0% vs 10.7%; P = .02) than females. Survivors with tinnitus or hearing loss were more likely to experience persistent dizziness or vertigo (tinnitus: P < 2 × 10-16 ; hearing loss: P = 6.4 × 10-9 ), take antidepressants (tinnitus: P = .02; hearing loss: P = .01), and report poorer overall health (tinnitus: P = 1.5 × 10-6 ; hearing loss: P = 1.7 × 10-6 ) in comparison with controls. GWAS of CRT-related tinnitus revealed a genome-wide significant signal in chromosome 1 led by rs203248 (P = 1.5 × 10-9 ), whereas GWAS of CRT-related hearing loss identified rs332013 (P = 5.8 × 10-7 ) in chromosome 8 and rs67522722 (P = 7.8 × 10-7 ) in chromosome 6 as nearly genome-wide significant. A replication analysis identified rs67522722, intronic to ATXN1, as being significantly associated with CRT-related hearing loss (P = .03) and de novo hearing loss (P = 3.6 × 10-4 ). Conclusions: CRT-associated ototoxicity was associated with sex, several neuro-otological symptoms, increased antidepressant use, and poorer self-reported health. GWAS of CRT-related hearing loss identified rs67522722, which was supported in an independent cohort of survivors. Lay summary: Hearing loss and subjective tinnitus (the perception of noise or ringing in the ear) are long-term side effects of cancer treatment and are common in children treated with radiation to the brain. These toxicities can affect childhood development and potentially contribute to serious learning and behavioral difficulties. This study's data indicate that males are at greater risk for hearing loss and tinnitus than females after radiation therapy to the brain. Those who develop these toxicities are more likely to use antidepressants and report poorer overall health. Health care providers can improve the management of survivors by informing patients and/or their parents of these risks.Item Features Associated With Weight Loss and Growth Stunting for Young Children During Cancer Therapy(Wolters Kluwer, 2021) Runco, Daniel V.; Wasilewski-Masker, Karen; Mazewski, Claire M.; Patterson, Briana C.; Mertens, Ann C.; Pediatrics, School of MedicineFeatures associated with malnutrition are poorly elucidated in pediatric cancer care. We aimed to better understand characteristics associated with weight-for-height (WHZ) and height-for-age (HAZ) changes for infants and young children during cancer treatment. This retrospective study included 434 patients diagnosed < 3 years old from 2007 to 2015 at a large pediatric cancer center. Patients starting treatment outside our center, those with relapsed or secondary malignancies, or with inaccurate information were excluded. Abstracted weights and heights for a 24-month period after treatment initiation were converted to sexspecific and age-specific z scores. Although not statistically different at baseline, patients with hematologic malignancies gained weight over time, while other tumor types did not. Higher treatment intensity and younger age at diagnosis increased odds of clinically significant weight loss. Older children had higher HAZ at diagnosis and HAZ also significantly decreased over time for all examined risk factors, which is distinctly different from patterns in WHZ over time. In conclusion, WHZ and HAZ are affected differently by cancer treatment in infants and young children. We identify key risk factors for weight loss and growth stunting which will be necessary to develop prospective trials to examine anthropometric, biochemical, and patient recorded outcomes around nutrition.Item Implementation of Occupational Therapy as Standard of Care for Pediatric Cancer Recovery: A Rapid Systematic Review(2024-04-24) Waltz, Audrey; Reckard, Addison; Lee, Kyla; Lee, Molly; John, Emma; Warne, Caiti; Chase, Anthony; Lee, Chang Dae; Department of Occupational Therapy, School of Health and Human SciencesObjective Pediatric oncology patients can experience different symptoms and difficulties impacting their daily lives. Currently, the standard of care for these patients varies based on location, setting, referrals, diagnosis, treatment plan, and interventions. The objective of this study was to evaluate the current standard of care for pediatric oncology patients and the impact and effectiveness occupational therapy (OT) can have on this population. Study Design This rapid systematic review (RSR) was conducted utilizing a program called Covidence. There were 2,927 articles from PubMed in the initial screen. Following this first screening of articles, 249 articles passed the title and abstract screening process. A full text review was completed from these and resulted in 33 articles for extraction. In total, 33 articles passed the screening process to be reviewed (Covidence, 2024). Results The goal of this study was to investigate whether the standard of care for pediatric cancer patients included OT or should include OT. Currently, skilled therapy is not consistently integrated into the pediatric oncology standard of care, likely due to insufficient awareness of its benefits and the inherent rigidity of cancer treatment plans. Treatment centers that did include skilled therapy services, such as OT, contributed to improvements in health related quality of life (HRQoL), motor skills, and the experience of the family unit. Additional findings include a reduction in pain, fatigue, and anxiety experienced by pediatric cancer patients. Examples of incorporated OT skilled therapy services included play-based therapy, aquatic therapy, hippotherapy, gross motor rehabilitation, and education and training programs for the patient and caregivers. Despite these findings, there is not an established standardized protocol implemented in hospitals and other centers that are aiming to address the occupational performance deficits experienced by pediatric cancer patients. Conclusion Skilled OT services should be implemented into a standard of care protocol for pediatric oncology patients as it has been found to help decrease levels of fatigue, anxiety, and pain as well as increase HRQoL and motor skills. Further research should be conducted to address two areas of focus. First, to determine the essential components of a skilled therapy protocol. Second, to create an established protocol for the rehabilitation of pediatric oncology patients.Item Normalized measures and patient characteristics to identify undernutrition in infants and young children treated for cancer(Elsevier, 2020-08) Runco, Daniel V.; Wasilewski-Masker, Karen; McCracken, Courtney E.; Wetzel, Martha; Mazewski, Claire M.; Patterson, Briana C.; Mertens, Ann C.; Pediatrics, School of MedicineBackground: Various measures and definitions for undernutrition are used in pediatrics. Younger children treated for cancer are at high risk, but lack well-defined risk-based screening and intervention. Methods: A retrospective study collected weight longitudinally for patients less than three years-old over two years after initiating cancer treatment. We included those diagnosed 2007-2015 at a large pediatric cancer center. Exclusion criteria included treatment starting outside our system, secondary or relapsed malignancy, or incomplete information. A decrease ≥1 in weight-for-age or weight-for-height z-score signified clinically significant weight loss. Univariate and multivariate models assessed hazards for developing first episode of clinically significant weight loss. Results: Of 372 patients, only 24.6% of patients lost 10% of weight, but 58.6% lost weight-for-age z-score ≥1 and 64.8% lost ≥1 weight-for-height z-score within two years of treatment initiation. Patients who lost weight were younger (median age 15 vs. 24 months, p < 0.001). Compared to patients diagnosed in the first year of life, those diagnosed 24-35 months were less likely to lose weight (HR 0.62, p < 0.001) and lost weight later (median time to weight loss 144 vs. 35 days). Higher treatment intensity increased weight loss risk (HR 2.30, p < 0.001) and decreased time to weight loss (35 vs. 154 days). No differences were found based on sex, diagnosis, enteral or parenteral nutrition, gastroenterology consults, or intensive care admissions. Conclusions: Using normalized z-scores is more sensitive for identifying weight loss. Younger children are more likely to lose weight with higher intensity cancer therapy. Patient and treatment specific information should be used in risk stratifying weight loss screening and nutritional interventions.Item Parental Experiences of Child Participation in a Phase I Pediatric Oncology Clinical Trial: "We Don't Have Time to Waste"(Sage, 2019-04) Crane, Stacey; Haase, Joan E.; Hickman, Susan E.; School of NursingChildren with cancer are only eligible for phase I clinical trials (P1Ts) when no known curative therapy remains. However, the primary aims of P1Ts are not focused on directly benefiting participants. This raises ethical concerns that can be best evaluated by exploring the experiences of participants. An empirical phenomenology study, using an adapted Colaizzi method, was conducted of 11 parents' lived experiences of their child's participation in a pediatric oncology P1T. Study findings were that parents' experiences reflected what it meant to have a child fighting to survive high-risk cancer. Although elements specific to P1T participation were identified, more pervasive was parents' sense of running out of time to find an effective treatment and needing to use time they had with their child well. Even though some problems were identified, overall parents did not regret their child's P1T participation and would recommend P1Ts to other parents of children with cancer.Item Participant experiences in phase I pediatric oncology clinical trials(2017-08-31) Crane, Stacey M.; Haase, Joan E.; Hickman, Susan; Carpenter, Janet S.; Schwartz, PeterPhase I clinical trials (P1Ts) are the first step in testing new medical therapies in humans, and are essential for developing new and innovative therapies for children with cancer. P1Ts are ethically controversial as they are not intended to directly benefit participants, but are particularly controversial for children with cancer who are only able to participate when there is no known curative therapy for their cancer. Benefits of pediatric oncology P1T participation may include improved quality of life (QOL) and hope. Risks may include fostering unrealistic hope, burdening children with additional medical procedures and toxicities, and limiting the opportunity for palliation. The goal of this dissertation was to investigate the P1T participation experience for children with cancer and their parents by: (1) assessing what is currently known about the participation experience, (2) exploring ways to understand and assess treatment burden and QOL during participation, and (3) interviewing parents about the experience of having a child participate in a P1T. Following a review of the literature, two studies were conducted: a longitudinal pilot study of 13 parent and child dyads who enrolled in a pediatric oncology early phase clinical trial at the recruiting institution, and a phenomenological study of 11 parents of children with cancer who participated in pediatric oncology P1Ts. Key findings included a dearth of research on the experiences of children and parents in pediatric oncology P1Ts. Instead, existing research has focused on consent processes. The longitudinal pilot study provided some insight into experiences of children and parents during trial participation, including that there may be time points when parents’ and children’s perceptions of the child’s quality of life substantively differ. Interviews with parents confirmed some of the anticipated benefits and risks of participation in P1Ts, and highlighted parents’ sense of running out of time to find an effective treatment and needing to use time they have with their child well. Specific challenges in conducting this research were participant attrition due to disease progression and the need for multi-site research to obtain an adequate sample.Item Posterior Reversible Encephalopathy Syndrome: Incidence and Clinical Characteristics in Children with Cancer Katherine(Wolters Kluwer, 2022) Sommers, Katherine R.; Skiles, Jodi; Lelan, Brian; Rowan, Courtney M.; Pediatrics, School of MedicineThe etiology and outcomes of posterior reversible encephalopathy syndrome (PRES) in children with cancer are not well understood. We aim to determine the incidence of PRES, describe associated morbidity and mortality, and better understand risk factors in this patient population. 473 children with a hematologic malignancy or post-allogeneic hematopoietic cell transplantation (HCT) between June 2015 and June 2020 were screened for PRES to determine incidence and whether age or underlying diagnosis are associated with development of PRES. We conducted a case-control study to evaluate whether comorbidities or chemotherapeutic agents are associated with PRES. Children with PRES were matched with two controls based on age and underlying diagnosis to identify additional risk factors. Fourteen patients developed PRES, with an incidence of 5.9/1000 people/year. Those diagnosed with PRES had commonly described PRES symptoms: hypertension, seizures, nausea/vomiting, altered mental status, and headaches. All patients received an MRI, and most had findings consistent with PRES. HCT was associated with the development of PRES. The use of Etoposide was associated with PRES but comorbidities, steroids and calcineurin inhibitors were not. While PRES was infrequent in this population, it is associated with high morbidity and mortality, with ICU admissions and an overall hospital mortality, due to secondary causes, of 29%.Item Providing Palliative and Hospice Care to Children, Adolescents and Young Adults with Cancer(Elsevier, 2021) Pyke-Grimm, Kimberly A.; Fisher, Beth; Haskamp, Amy; Bell, Cynthia J.; Newman, Amy R.; Pediatrics, School of MedicineObjectives: To describe palliative, concurrent, and hospice care in pediatric oncology in the United States (US), we present a clinical scenario illustrating palliative and hospice care, including eligibility for concurrent care, insurance coverage and billing, barriers to accessing quality pediatric palliative and hospice care, and implications for oncology nursing practice. Data sources: Peer-reviewed articles, clinical practice guidelines, professional organizations, and expert clinical opinion examining pediatric oncology, palliative care, and hospice care. Conclusion: Understanding the goals of palliative and hospice care and the differences between them is important in providing holistic, goal-directed care. Implications for nursing practice: Oncology nurses play a pivotal role in supporting the goals of pediatric palliative care and hospice care and in educating patients and their families. Nurses form trusting relationships with pediatric oncology patients and their families and are in a position to advocate for best palliative care practices as disease progresses to end of life, including when appropriate concurrent care or hospice.