Abstract:
BACKGROUND:Children with cancer have high utilization of the emergency department (ED), but little is known about which outcomes are most important to them and their caregivers when they seek care in the ED. PROCEDURE:A qualitative evaluation of ED experience for children with cancer and their caregivers was performed using self-reported interactive toolkits. Eligible participants included children with cancer (ages 11-19) and caregivers of children with cancer whose child received cancer therapy within the last year and had an ED visit within the last 2 years. Eligible participants received toolkits by mail and received incentives if they completed the toolkit. Toolkits were transcribed, thematically coded, and iteratively analyzed using Nvivo 11.0 software. RESULTS:There were 26 toolkits received-seven by children aged 11-17 years and 19 by caregivers (11 with children aged 2-7 years, eight with children aged 11-17 years). About half were from within 1 h of their treating institution. The most important outcomes to this population included system-level issues (eg, cleanliness of space, timeliness of evaluation) and oncology-provider- and ED-provider-level issues (eg, ability to access port-a-caths, quality of communication). Participants also identified outcomes that were within the control of the patient/caregiver, such as improving their sense of preparedness. CONCLUSION:The important outcomes to children with cancer and their caregivers when they seek care in the ED are distinct from current quality metrics. Future research should focus on the development and validation of a patient-centered outcomes tool.
journal_name
Pediatr Blood Cancerjournal_title
Pediatric blood & cancerauthors
Mueller EL,Cochrane AR,Lynch DO,Cockrum BP,Wiehe SEdoi
10.1002/pbc.27903subject
Has Abstractpub_date
2019-10-01 00:00:00pages
e27903issue
10eissn
1545-5009issn
1545-5017journal_volume
66pub_type
杂志文章abstract::A male patient diagnosed with severe congenital protein C (PC) deficiency during the neonatal period was treated with long-term warfarin but frequently developed purpura fulminans and bleeding. At four years of age, edoxaban was initiated (direct oral anticoagulant [DOAC]). His d-dimer and fibrin/fibrinogen degradatio...
journal_title:Pediatric blood & cancer
pub_type: 杂志文章
doi:10.1002/pbc.27686
更新日期:2019-06-01 00:00:00
abstract::Children with primary immunodeficiency or chromosomal breakage syndromes are at increased risk of developing non-Hodgkin lymphomas; they cannot tolerate standard chemotherapy regimens. We report two children with diffuse, large, B-cell lymphoma; one had ataxia telangiectasia and one had common variable immunodeficienc...
journal_title:Pediatric blood & cancer
pub_type: 杂志文章
doi:10.1002/pbc.21808
更新日期:2009-05-01 00:00:00
abstract:BACKGROUND:Advanced irradiation techniques, including intensity-modulated radiation therapy (IMRT), aim to limit irradiation to adjoining tissues by conforming beams to a well-defined volume. In intracranial germinomas, whole-ventricular IMRT decreases the volume of irradiation to surrounding parenchyma. This study exa...
journal_title:Pediatric blood & cancer
pub_type: 杂志文章
doi:10.1002/pbc.28005
更新日期:2019-12-01 00:00:00
abstract:BACKGROUND:Only a few studies have assessed cardiovascular risk factors (CRFs) in childhood cancer survivors. We determined the prevalence of CRFs in long-term survivors of acute lymphoblastic leukemia (ALL) and Wilms tumor. PROCEDURE:Adult survivors of ALL and Wilms tumor treated with radiotherapy and chemotherapy (R...
journal_title:Pediatric blood & cancer
pub_type: 杂志文章
doi:10.1002/pbc.22518
更新日期:2010-10-01 00:00:00
abstract::Dry eye disease is a well-known late complication of radiation therapy and is often difficult to treat. We evaluated the usefulness of cyclosporine 0.05% ophthalmic emulsion for the treatment of radiation-associated dry eye in children. Eleven children received cyclosporine 0.05% emulsion twice daily after failure of ...
journal_title:Pediatric blood & cancer
pub_type: 杂志文章
doi:10.1002/pbc.24461
更新日期:2013-07-01 00:00:00
abstract::It is unclear if dosing intervals for Erwinase can be extended with intramuscular (i.m.) versus intravenous (i.v.) dosing. Children with acute lymphoblastic leukemia received Erwinase at 30 000-42 000 IU/m2 i.v. or i.m. I.m. Erwinase (n = 22) achieved activity above 0.1 IU/mL for longer than i.v. Erwinase (n = 33) (3....
journal_title:Pediatric blood & cancer
pub_type: 杂志文章
doi:10.1002/pbc.28244
更新日期:2020-07-01 00:00:00
abstract:BACKGROUND:Radiotherapy is often deferred in very young children with medulloblastoma, in favor of more intense chemotherapy and stem cell rescue; however, posterior fossa radiation has been shown to improve overall survival (OS) and event-free survival compared with adjuvant chemotherapy alone. This study was performe...
journal_title:Pediatric blood & cancer
pub_type: 杂志文章
doi:10.1002/pbc.27972
更新日期:2019-12-01 00:00:00
abstract:BACKGROUND:Sickle cell disease (SCD) is characterized by frequent disease-related events that require acute care. It is unknown to what extent patients utilize multiple hospitals for acute care. We examined the continuity pattern of acute care visits to the hospital or emergency department. We hypothesized that among p...
journal_title:Pediatric blood & cancer
pub_type: 杂志文章
doi:10.1002/pbc.24028
更新日期:2012-10-01 00:00:00
abstract::We report on an acute myeloid leukemia in a neonate whose mother was exposed to diethylstilboestrol in utero. The newborn presented with leukemia cutis, hemorrhagic skin lesions, hyperleucocytosis and disseminated intravascular coagulation. A bone marrow examination confirmed the diagnosis of acute monocytic leukemia ...
journal_title:Pediatric blood & cancer
pub_type: 杂志文章
doi:10.1002/pbc.22040
更新日期:2009-08-01 00:00:00
abstract:OBJECTIVES:The aim of this study was to assess glomerular and tubular renal function after HSCT in children in a prospective trial. METHODS:Renal function was assessed prospectively before HSCT (on day -10), on days +30, +100, and at least 6 months after transplantation in 34 patients (21 females/13 males) with a mean...
journal_title:Pediatric blood & cancer
pub_type: 杂志文章
doi:10.1002/pbc.22030
更新日期:2009-08-01 00:00:00
abstract:BACKGROUND:Children treated with cranial radiotherapy (CRT) for leukemia are at risk of developing central nervous system injuries. Magnetic resonance imaging (MRI) represents the examination method of choice for evaluating radiation-induced brain complications. The purpose of this report is to describe the spectrum of...
journal_title:Pediatric blood & cancer
pub_type: 杂志文章
doi:10.1002/pbc.22923
更新日期:2011-08-01 00:00:00
abstract:BACKGROUND:Medulloblastoma is an infratentorial primitive neuroectodermal tumour, diagnosed in paediatric population. The radiotherapy is an essential method of treatment for these tumours. The impact of technical quality of radiation therapy on survival was recently considered. In this study treatment-related variable...
journal_title:Pediatric blood & cancer
pub_type: 杂志文章
doi:10.1002/pbc.10401
更新日期:2004-02-01 00:00:00
abstract:BACKGROUND:Outcomes for childhood brain tumors are now associated with a five-year survival rate of 75%. Endocrine effects of brain tumors are common, occurring in 43% of patients by 10 years from tumor diagnosis. Optimal timing of screening for endocrinopathies remains undefined. We aim to identify incidence and timin...
journal_title:Pediatric blood & cancer
pub_type: 杂志文章
doi:10.1002/pbc.27631
更新日期:2019-05-01 00:00:00
abstract::A major hallmark of NF1 is the development of benign tumors, including peripheral neurofibromas, plexiform neurofibromas, gliomas of the optic tract, other low grade gliomas, and pheochromocytomas. Hepatoblastoma have not been previously reported in patients with neurofibromatosis type 1. We present a case of a 9-mont...
journal_title:Pediatric blood & cancer
pub_type: 杂志文章
doi:10.1002/pbc.20663
更新日期:2007-09-01 00:00:00
abstract::Hemorrhagic cystitis (HC) is a common complication after stem cell transplantation (SCT) that occurs more frequently in patients with Fanconi anemia (FA) because of hypersensitivity of their cells to the agents used in the preparation for SCT (chemo and radiation). Many HC cases respond to therapy with hyperhydration ...
journal_title:Pediatric blood & cancer
pub_type: 杂志文章
doi:10.1002/pbc.20692
更新日期:2007-11-01 00:00:00
abstract:BACKGROUND:To evaluate outcomes of Group D eyes of bilateral retinoblastoma patients treated with primary chemoreduction and external beam radiation as salvage. PROCEDURE:Retrospective chart review of patients diagnosed with bilateral retinoblastoma and designated Group D in at least one eye from January 1, 2000 to De...
journal_title:Pediatric blood & cancer
pub_type: 杂志文章
doi:10.1002/pbc.24303
更新日期:2013-04-01 00:00:00
abstract:BACKGROUND:Ewing sarcoma (EWS) is rarely diagnosed as a second malignancy. We sought to describe a cohort of patients with secondary EWS and investigate if patient characteristics and survival differ between patients with secondary and primary EWS. PROCEDURE:Patients with EWS or peripheral primitive neuroectodermal tu...
journal_title:Pediatric blood & cancer
pub_type: 杂志文章
doi:10.1002/pbc.24251
更新日期:2013-04-01 00:00:00
abstract:BACKGROUND:Burnout is a work-related syndrome consisting of emotional exhaustion, depersonalization, and diminished feelings of personal accomplishment. Physicians who care for patients with life-threatening illnesses are at high risk for developing burnout. This survey evaluates the prevalence of burnout among pediatr...
journal_title:Pediatric blood & cancer
pub_type: 杂志文章
doi:10.1002/pbc.23121
更新日期:2011-12-15 00:00:00
abstract:BACKGROUND:Patients with sickle cell disease (SCD) receiving chronic blood transfusions are at risk of developing iron overload and organ toxicity. Chelation therapy with either subcutaneous (SQ) desferrioxamine (DFO) or oral deferasirox is effective in preventing and reducing iron overload but poses significant challe...
journal_title:Pediatric blood & cancer
pub_type: 杂志文章
doi:10.1002/pbc.22660
更新日期:2010-12-15 00:00:00
abstract:BACKGROUND:Central nervous system irradiation (CNS-RT) has played a central role in the cure of acute lymphoblastic leukemia (ALL), but due to the risk of long-term toxicity, it is now considered a less-favorable method of CNS-directed therapy. PROCEDURES:Retrospectively, we estimated the effect of CNS involvement and...
journal_title:Pediatric blood & cancer
pub_type: 杂志文章
doi:10.1002/pbc.26191
更新日期:2017-02-01 00:00:00
abstract::Six patients with high-risk neuroblastoma underwent the second stem cell collection round with G-CSF (5 μg/kg/day) + plerixafor (0.24 mg/kg/day) because the amount of CD34(+) cells collected during the first collection round with G-CSF alone was insufficient. The number of CD34(+) cells collected in the second collect...
journal_title:Pediatric blood & cancer
pub_type: 杂志文章
doi:10.1002/pbc.24506
更新日期:2013-08-01 00:00:00
abstract:BACKGROUND:Childhood cancer survivors (CCS) are at risk of developing long-term morbidity, which is likely to be presented to a primary care physician (PCP). Therefore, insight into CCS's PCP-based health care use is needed. We investigated the volume and underlying health problems of PCP-based health care use and the ...
journal_title:Pediatric blood & cancer
pub_type: 杂志文章
doi:10.1002/pbc.27774
更新日期:2019-08-01 00:00:00
abstract:BACKGROUND:The improved survival rates for childhood acute lymphoblastic leukemia (ALL) may be jeopardized by the development of a second cancer, which has been associated with thiopurine therapy. PROCEDURE:We retrospectively analyzed three sequential Nordic Society of Paediatric Haematology and Oncology's protocols c...
journal_title:Pediatric blood & cancer
pub_type: 杂志文章
doi:10.1002/pbc.26518
更新日期:2017-10-01 00:00:00
abstract:BACKGROUND:Stroke is a severe clinical disorder in sickle cell disease (SCD), and few studies have evaluated transcranial Doppler (TCD) flow velocities in hemoglobin SC disease (HbSC). The guidelines for stroke risk are based on evaluations in sickle cell anemia (SCA) or HbS/β thalassemia. PROCEDURE:In this study, we ...
journal_title:Pediatric blood & cancer
pub_type: 杂志文章
doi:10.1002/pbc.26342
更新日期:2017-05-01 00:00:00
abstract:BACKGROUND:We examined patterns of failure in pediatric patients with thoracic sarcoma and pulmonary metastases treated with intensity-modulated radiation therapy with dose-painting (DP-IMRT). PROCEDURE:Eleven pediatric patients, five with Ewing sarcoma family tumors (ESFT) and six with rhabdomyosarcoma (RMS), with pr...
journal_title:Pediatric blood & cancer
pub_type: 临床试验,杂志文章
doi:10.1002/pbc.24502
更新日期:2013-10-01 00:00:00
abstract:BACKGROUND:Clinical characteristics and optimal treatment strategies for spindle cell/sclerosing rhabdomyosarcoma (ssRMS) have not been well established because of its rarity. PROCEDURE:Retrospective re-evaluation of sarcoma specimens (1997-2014) identified 16 ssRMSs (median age 20 years, range 7-39 years). Clinicopat...
journal_title:Pediatric blood & cancer
pub_type: 杂志文章
doi:10.1002/pbc.25367
更新日期:2015-06-01 00:00:00
abstract::The objective of this study is to determine the prevalence of adherence to daily medications among children with sickle cell disease (SCD). Prescription records for 12 months were obtained from participants who had insurance in a Medicaid-based single health maintenance organization. Adherence was measured as a ratio ...
journal_title:Pediatric blood & cancer
pub_type: 杂志文章
doi:10.1002/pbc.22605
更新日期:2010-09-01 00:00:00
abstract:BACKGROUND:Aberrant gangliosides are produced and shed by some tumors into the extracellular milieu. Their concentration is related to disease progression in children with neuroblastoma and in experimental models. The mechanism for this tumor promoting effect is not known. PURPOSE:Here, we investigated the effect of g...
journal_title:Pediatric blood & cancer
pub_type: 杂志文章
doi:10.1002/pbc.20326
更新日期:2006-03-01 00:00:00
abstract:BACKGROUND:Pediatric health-related quality of life (HRQOL) questionnaires have been validated in children with sickle cell disease (SCD), but small sample sizes in these studies have limited clinical comparisons. We used the baseline clinical data from the Collaborative Data (C-Data) Project of the Comprehensive Sickl...
journal_title:Pediatric blood & cancer
pub_type: 杂志文章,多中心研究
doi:10.1002/pbc.22497
更新日期:2010-09-01 00:00:00
abstract:BACKGROUND:The potential role of VEGF in osteosarcoma has been evaluated in several studies. The majority of them included heterogeneous and limited series of patients, giving conflicting results. The aim of presented study is to evaluate the prognostic role of VEGF-A in biopsy samples of clinically homogeneous group o...
journal_title:Pediatric blood & cancer
pub_type: 杂志文章
doi:10.1002/pbc.23021
更新日期:2011-07-15 00:00:00