Browsing by Subject "pediatric cancer"

Now showing 1 - 6 of 6
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    Chaplain care in pediatric oncology: Insight for interprofessional collaboration
    (Wiley, 2019-12) Lion, Alex H.; Skiles, Jodi L.; Newton Watson, Beth; Young, J. Daniel; Torke, Alexia M.; Pediatrics, School of Medicine
    Background Although attending to spiritual and religious needs is part of high quality care of pediatric cancer patients, oncology clinicians may not understand the role of the chaplain, resulting in underutilization of resources and failure to fully integrate the chaplain into the clinical team. We provide a description of what the chaplain does in the care of pediatric oncology patients. Methods We conducted a qualitative content analysis of chaplain chart notes over a one‐year period on the pediatric oncology service at a freestanding children's hospital. Using criteria designed to capture multiple potential factors in chaplain referral, we selected 30 patients for thematic analysis. Results In 2016, 166 pediatric patients were diagnosed with cancer and received ongoing care at our institution. From the 30 patients selected, 230 chaplain encounters were documented in the medical chart. Three major themes emerged. (1) The chaplains provided a rich description of spiritual and psychosocial aspects of the patient and family's experience; (2) chaplains provided diverse interventions, both religious and secular in nature; and (3) chaplains provided care within a longitudinal relationship. All three themes depend on the empathic listening by a chaplain. Conclusions The chaplains’ observations about patient and family beliefs, experiences, and emotional/spiritual states have the potential to inform the interdisciplinary care of the patient. Chaplain documentation provides insight into how spiritual care interventions and close relationships may promote patient and family well‐being. In future work, we will explore how to give voice to their insights in caring for pediatric oncology patients.
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    Factors influencing survival among Kenyan children diagnosed with endemic Burkitt lymphom between 2003 and 2011: a historical cohort study
    (Wiley, 2016-09-15) Buckle, Geoffrey; Maranda, Louise; Skiles, Jodi; Ong'echa, John Michael; Foley, Joslyn; Epstein, Mara; Vik, Terry A.; Schroeder, Andrew; Lemberger, Jennifer; Rosmarin, Alan; Remick, Scot C.; Bailey, Jeffrey A.; Vulule, John; Otieno, Juliana A.; Moormann, Ann M.; Pediatrics, School of Medicine
    Discovering how to improve survival and establishing clinical reference points for children diagnosed with endemic Burkitt lymphoma (eBL) in resource-constrained settings has recaptured international attention. Using multivariate analyses, we evaluated 428 children with eBL in Kenya for age, gender, tumor stage, nutritional status, hemoglobin, lactate dehydrogenase (LDH), Epstein-Barr virus (EBV) and Plasmodium falciparum prior to induction of chemotherapy (cyclophosphamide, vincristine, methotrexate, and doxorubicin) to identify predictive and prognostic biomarkers of survival. During this ten year prospective study period, 22% died in-hospital and 78% completed six-courses of chemotherapy. Of those, 16% relapsed or died later; 31% achieved event-free-survival; and 31% were lost to follow-up; the overall one-year survival was 45%. After adjusting for co-variates, low hemoglobin (<8g/dL) and high LDH (>400 mU/ml) were associated with increased risk of death (adjusted Hazard Ratio (aHR)=1.57 [0.97 to 2.41]) and aHR=1.84, [0.91 to 3.69], respectively). Anemic children with malaria were 3.55 times more likely to die [1.10 to 11.44] compared to patients without anemia or malarial infection. EBV load did not differ by tumor stage nor was it associated with survival. System-level factors can also contribute to poor outcomes. Children were more likely to die when inadvertently overdosed by more than 115% of the correct dose of cyclophosphamide (aHR=1.43 [0.84 to 2.43]), or doxorubicin (aHR=1.25, [0.66 to 2.35]), compared to those receiving accurate doses of the respective agent in this setting. This study codifies risk factors associated with poor outcomes for eBL patients in Africa and provides a benchmark by which to assess improvements in survival for new chemotherapeutic approaches.
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    Febrile Neutropenia in Children: Etiologies, Outcomes, and Risk Factors with Prolonged Fever
    (Lidsen, 2020-02) Alali, Muayad; David, Michael Z.; Ham, Sandra A.; Danziger-Isakov, L. A.; Bartlett, Allison H.; Petty, Lindsay; Pisano, Jennifer; Pediatrics, School of Medicine
    Most studies of children with prolonged fever and neutropenia (PFN) have focused on invasive fungal disease (IFD) as the etiology of fever and not on other causes. Data are lacking regarding risk factors and adverse outcomes in pediatric cancer patients with PFN compared with those whose fevers resolve more rapidly. Retrospective medical record review was performed for all cancer patients with febrile neutropenia (FN) in the pediatric oncology unit at University of Chicago Medicine Comer Children’s Hospital from March 2009 to July 2016. Resolving febrile neutropenia (RFN), lasting less than 96 hours, and PFN episodes (≥ 96 hours) were compared to identify risk factors and outcomes associated with PFN. A total of 572 FN episodes were identified in 265 patients. PFN occurred in 119 (21%) FN episodes (50 patients) and RFN occurred in 453 (79%) FN episodes (215 patients). In multivariable analysis, autologous stem cell transplant (odds ratio [OR] 6.5, P <0.001), fever >39°C at the time of presentation (OR 2.4, P<0.01) and absolute monocyte count (AMC) <100 cells/m3 (OR 2.7, P=<0.01) were independently associated with PFN. Pneumonia, neutropenic enterocolitis and IFD were more common etiologies of fever in PFN compared with RFN. Patients with PFN were more likely to be admitted to the pediatric intensive care unit [OR 3, (95%CI, 1.66%-5.28%), P<0.001] and had a trend toward higher 30-day mortality [OR 3.8, (95%CI, 0.52%-29.32%), P=0.07]. Patients with PFN are at increased risk for serious illness and death. A better understanding of the etiologies of PFN other than IFD is needed to be able to appropriately diagnose and treat this high-risk group.
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    Healthcare utilization and spending by children with cancer on Medicaid
    (Wiley, 2017-11) Mueller, Emily L.; Hall, Matt; Berry, Jay G.; Carroll, Aaron E.; Macy, Michelle L.; Medicine, School of Medicine
    Background Children with cancer are a unique patient population with high resource, complex healthcare needs. Understanding their healthcare utilization could highlight areas for care optimization. Procedure We performed a retrospective, cross-sectional analysis of the 2014 Truven Marketscan Medicaid Database to explore clinical attributes, utilization, and spending among children with cancer who were Medicaid enrollees. Eligible patients included children (ages 0–18 years) with cancer (Clinical Risk Group 8). Healthcare utilization and spending (per member per month, PMPM) were assessed overall and across specific healthcare services. Results Children with cancer (n = 5,405) represent less than 1% of the 1,516,457 children with medical complexity in the dataset. Children with cancer had high services use: laboratory/radiographic testing (93.0%), outpatient specialty care (83.4%), outpatient therapy/treatment (53.4%), emergency department (43.7%), hospitalization (31.5%), home healthcare (9.5%). PMPM spending for children with cancer was $3,706 overall and $2,323 for hospital care. Conclusion Children with cancer have high healthcare resource use and spending. Differences in geographic distribution of services for children with cancer and the trajectory of spending over the course of therapy are areas for future investigation aimed at lowering costs of care without compromising on health outcomes.
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    Patient Preferences Matter: A Qualitative Inquiry With Patients About the Surgical Decision for Osteosarcoma in the Lower Extremity
    (2020-06) Panoch, Janet Elizabeth; Goering, Elizabeth; Parrish-Sprowl, John; Hoffman-Longtin, Krista; Beckman, Emily
    Purpose The experience of surgical patient decision-making for amputation, rotationplasty, or limb salvage surgery for the lower extremity was explored with osteosarcoma survivors and parents. Issues and patient concerns were examined prospectively in Facebook posts and retrospectively in personal interviews. Recommendations were sought for the development of a decision aid. Methods A qualitative inquiry was conducted in two studies: 1) a content analysis of 15 Facebook posts on the Osteosarcoma and Ewing’s Sarcoma Support Group about the surgical decision, and 2) a narrative analysis of 20 interviews with survivors and parents about their lived experience. The interview guide was informed by a knowledge translation theoretical model. In-person or video interviews included 29 parents or adolescent-young adults between the ages of 14-71 across 15 states. Results Participants were concerned about making the best decision for themselves or their child. Having little time to make the decision contributes to feeling overwhelmed and uninformed. The lack of information about options, potential limitations, prosthetic needs, and long-term functional outcomes impacts the decision-making process. Resources for finding information are limited. Shared decision-making approaches were preferred though many decisions were made by the surgeon. Patients felt unprepared for complications encountered after limb salvage. Conclusions Limb salvage surgery remains the gold standard for most providers; participants felt there was a bias on the surgeon’s part for salvage. Potential complications and uncertainties of each option were largely omitted in consultations; information about living with a prosthesis is an unmet need for decision-making. The decision affected their quality of life in ways they did not anticipate, resulting in additional decisions. Implications The findings of this study can be used in medical education for orthopedic surgeons to understand the long-term outcomes of limb salvage surgery. Patient preferences matter in the decision and patients who are involved in the decision are more satisfied if they are prepared for the unknown and potential complications. Recommendations for a decision aid include an online format, content that includes a discussion of uncertainties as well as complications of each option, patient stories for long-term outcomes, and resources for psychosocial support.
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    Retinoblastoma, the visible CNS tumor: A review
    (Wiley, 2019-01) Dimaras, Helen; Corson, Timothy W.; Ophthalmology, School of Medicine
    The pediatric ocular cancer retinoblastoma is the only central nervous system (CNS) tumor readily observed without specialized equipment: it can be seen by, and in, the naked eye. This accessibility enables unique imaging modalities. Here, we review this cancer for a neuroscience audience, highlighting these clinical and research imaging options, including fundus imaging, optical coherence tomography, ultrasound, and magnetic resonance imaging. We also discuss the subtype of retinoblastoma driven by the MYCN oncogene more commonly associated with neuroblastoma, and consider trilateral retinoblastoma, in which an intracranial tumor arises along with ocular tumors in patients with germline RB1 gene mutations. Retinoblastoma research and clinical care can offer insights applicable to CNS malignancies, and also benefit from approaches developed elsewhere in the CNS.