Center-Based Quality Initiative Targets Youth Preparedness for Medical Independence: HEMO-Milestones Tool in a Comprehensive Hemophilia Clinic Setting.


BACKGROUND:Patient transition readiness self-assessment tools and investigation into patient and parent perceptions of the transition process from pediatric to adult care models have informed recognition of gaps in care, particularly for those with chronic disease. Implementation of a longitudinal transition process with patient tracking provides the opportunity for individualized education and skill building and fosters a patient-centered model. PROCEDURE:Quality improvement intervention was used to assess and improve our transition process at annual comprehensive clinic visits for patients with bleeding disorders at our tertiary care pediatric center. RESULTS:Thirty-one patients with rare bleeding disorders received an introduction to the transition process using the HEMO-milestones tool in our hemophilia comprehensive clinic from September to December 2014. The percentage of patients with documented, age-specific hemophilia knowledge/skill assessment increased from 21% to 97%. The percentage of patients with documented skill building or adult care transfer plan increased from 55% to 93%. Designated postclinic team debriefings facilitated the creation of collaborative documentation summarizing each patient's transition readiness and plan for continued skill building. CONCLUSIONS:The HEMO-milestones tool promotes a standardized approach to evaluation of self-management competency. When combined with a collaborative multidisciplinary effort, it increases plans for skill building in patients with hemophilia. This tool is easily modifiable for alternate subspecialty use and does not require extensive training for implementation.


Pediatr Blood Cancer


Pediatric blood & cancer


Croteau SE,Padula M,Quint K,D'Angelo L,Neufeld EJ




Has Abstract


2016-03-01 00:00:00












  • Identifying relapses and stem cell transplants in pediatric acute lymphoblastic leukemia using administrative data: Capturing national outcomes irrespective of trial enrollment.

    abstract:INTRODUCTION:Our objectives were to design and validate methods to identify relapse and hematopoietic stem cell transplantation (HSCT) in children with acute lymphoblastic leukemia (ALL) using administrative data representing hospitalizations at US pediatric institutions. METHODS:We developed daily billing and ICD-9 c...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Cahen VC,Li Y,Getz KD,Elgarten CW,DiNofia AM,Wilkes JJ,Winestone LE,Huang YV,Miller TP,Gramatges MM,Rabin KR,Fisher BT,Aplenc R,Seif AE

    更新日期:2020-05-11 00:00:00

  • Gangliosides promote platelet adhesion and facilitate neuroblastoma cell adhesion under dynamic conditions simulating blood flow.

    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


    authors: Jabbar AA,Kazarian T,Hakobyan N,Valentino LA

    更新日期:2006-03-01 00:00:00

  • A single-center experience with undifferentiated embryonal sarcoma of the liver.

    abstract::Undifferentiated embryonal sarcoma of the liver (UESL) is a rare aggressive mesenchymal pediatric tumor. Previously, reported outcomes have been very poor. Here, we report a single-center experience of five patients with UESL treated with upfront gross total resection and adjuvant chemotherapy. We have a median follow...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Mathias MD,Ambati SR,Chou AJ,Slotkin EK,Wexler LH,Meyers PA,Magnan H

    更新日期:2016-12-01 00:00:00

  • Transverse myelitis as an unexpected complication following treatment with dinutuximab in pediatric patients with high-risk neuroblastoma: A case series.

    abstract::Immunotherapy with the anti-GD2 monoclonal antibody ch14.18, or dinutuximab, represents an important therapeutic advance in the treatment of pediatric high-risk neuroblastoma and is now considered part of standard of care in this patient population. To date, transverse myelitis as a result of dinutuximab therapy has n...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Ding YY,Panzer J,Maris JM,Castañeda A,Gomez-Chiari M,Mora J

    更新日期:2018-01-01 00:00:00

  • Phase 1 study of pomalidomide in children with recurrent, refractory, and progressive central nervous system tumors: A Pediatric Brain Tumor Consortium trial.

    abstract:BACKGROUND:Central nervous system (CNS) malignancies are the most common solid tumors among children, and novel therapies are needed to help improve survival. Pomalidomide is an immunomodulatory agent that displays antiangiogenic and cytotoxic activity, making it an appropriate candidate to explore in pediatric CNS tum...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Fangusaro J,Mitchell DA,Kocak M,Robinson GW,Baxter PA,Hwang EI,Huang J,Onar-Thomas A,Dunkel IJ,Fouladi M,Warren KE

    更新日期:2021-02-01 00:00:00

  • Successful antifungal combination therapy with voriconazole and caspofungin.

    abstract::A 12-year-old boy in third remission of an acute lymphoblastic leukaemia developed infection of lung and paranasal sinuses with Aspergillus flavus in neutropenia. Because of the high risk of leukaemia-relapse bone marrow transplantation (BMT) from a matched unrelated donor was carried out despite invasive pulmonary as...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Schuster F,Moelter C,Schmid I,Graubner UB,Kammer B,Belohradsky BH,Führer M

    更新日期:2005-06-15 00:00:00

  • Access to specialized pediatric cancer care in Switzerland.

    abstract:BACKGROUND:Specialized pediatric cancer centers (PCCs) are thought to be essential to obtain state-of-the-art care for children and adolescents. We determined the proportion of childhood cancer patients not treated in a PCC, and described their characteristics and place of treatment. PROCEDURE:The Swiss Childhood Canc...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章,多中心研究


    authors: Adam M,von der Weid N,Michel G,Zwahlen M,Lutz JM,Probst-Hensch N,Niggli F,Kuehni C,Swiss Pediatric Oncology Group (SPOG).,Swiss Association of Cancer Registries (ASRT).

    更新日期:2010-05-01 00:00:00

  • Treatment results for patients with localized, completely resected (Group I) alveolar rhabdomyosarcoma on Intergroup Rhabdomyosarcoma Study Group (IRSG) protocols III and IV, 1984-1997: a report from the Children's Oncology Group.

    abstract:PURPOSE:To assess local control, event-free survival (EFS), and overall survival (OS) rates in 71 patients with localized, completely resected (Group I) alveolar rhabdomyosarcoma (ALV RMS) and their relation to radiation therapy (RT) on IRSG Protocols III and IV, 1984-1997. METHODS:Chart review and standard statistica...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Raney RB,Anderson JR,Brown KL,Huh WW,Maurer HM,Meyer WH,Parham DM,Rodeberg DA,Wolden SL,Donaldson SS,Soft-Tissue Sarcoma Committee of the Children's Oncology Group Arcadia California USA.

    更新日期:2010-10-01 00:00:00

  • Safety of central venous catheter placement at diagnosis of acute lymphoblastic leukemia in children.

    abstract:BACKGROUND:Central venous catheters (CVC) facilitate the management of patients with cancer. Optimal timing for placement of a CVC is controversial. We sought to determine whether early placement in children with acute lymphoblastic leukemia (ALL), a group at high risk for infection and thrombosis, was associated with ...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Gonzalez G,Davidoff AM,Howard SC,Pui CH,Rao BN,Shenep JL,Wozniak A,Shochat SJ

    更新日期:2012-04-01 00:00:00

  • Plasma levels of osteopontin from birth to adulthood.

    abstract:AIM:Osteopontin (OPN) has been investigated as a biomarker for cancer and nonmalignant diseases during the last decades. Data about OPN as a potential biomarker in childhood diseases are still sparse, and reference values are not available in children. We aimed to establish reference values for children from birth to y...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Nourkami-Tutdibi N,Graf N,Beier R,Zemlin M,Tutdibi E

    更新日期:2020-07-01 00:00:00

  • Information provision and information needs in adult survivors of childhood cancer.

    abstract:BACKGROUND:Knowledge about their past medical history is central for childhood cancer survivors to ensure informed decisions in their health management. Knowledge about information provision and information needs in this population is still scarce. We thus aimed to assess: (1) the information survivors reported to have...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Gianinazzi ME,Essig S,Rueegg CS,von der Weid NX,Brazzola P,Kuehni CE,Michel G,Swiss Paediatric Oncology Group (SPOG).

    更新日期:2014-02-01 00:00:00

  • The role of the initial bone marrow aspirate in the diagnosis of hemophagocytic lymphohistiocytosis.

    abstract:BACKGROUND:The identification of hemophagocytosis (HPC) in tissue or bone marrow (BM) represents only one of 5/8 criteria needed for the diagnosis of hemophagocytic lymphohistiocytosis (HLH). Yet, confirmation of HPC in bone marrow aspirates (BMA) is often relied upon to make therapeutic decisions. There is no standard...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Gupta A,Tyrrell P,Valani R,Benseler S,Weitzman S,Abdelhaleem M

    更新日期:2008-09-01 00:00:00

  • Pilomyxoid astrocytoma treated successfully with vemurafenib.

    abstract::The BRAF V600E missense mutation is known to be present in a subset of central nervous system tumors. We report a patient with a BRAF V600E mutated pilomyxoid astrocytoma who failed multiple conventional chemotherapy regimens. Treatment with vemurafenib, a molecularly targeted therapy against the mutant BRAF V600E kin...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Skrypek M,Foreman N,Guillaume D,Moertel C

    更新日期:2014-11-01 00:00:00

  • A meta-analysis of the neuropsychological effects of chemotherapy in the treatment of childhood cancer.

    abstract:BACKGROUND:Long-term neuropsychological deficits associated with pediatric cancers and the related treatments have been consistently reported. Whole brain cranial radiation therapy (CRT) is associated with neurocognitive impairment. As a result, physicians are reticent to use CRT in favor of systemic or intrathecal che...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章,meta分析


    authors: Pierson C,Waite E,Pyykkonen B

    更新日期:2016-11-01 00:00:00

  • Evaluation of radiation dose to cardiac and pulmonary tissue among patients with stage IV Wilms tumor and pulmonary metastases.

    abstract:BACKGROUND:Most patients with stage IV Wilms tumor (WT) and pulmonary metastases are treated with surgery, local radiotherapy (RT), and whole-lung irradiation (WLI). The Children's Oncology Group is studying whether WLI should only be given if metastatic lung lesions persist following induction chemotherapy. We hypothe...

    journal_title:Pediatric blood & cancer

    pub_type: 临床试验,杂志文章


    authors: Farooqi A,Siddiqi A,Khan MK,Esiashvili N

    更新日期:2014-08-01 00:00:00

  • Pulmonary function abnormalities in childhood cancer survivors treated with bleomycin.

    abstract:BACKGROUND:Bleomycin is associated with pulmonary toxic side effects including pneumonitis and pulmonary fibrosis. We evaluated the prevalence of long-term pulmonary function abnormalities in children receiving bleomycin therapy in the context of current chemotherapeutic regimens. METHODS:A retrospective review of pat...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: De A,Guryev I,LaRiviere A,Kato R,Wee CP,Mascarenhas L,Keens TG,Venkatramani R

    更新日期:2014-09-01 00:00:00

  • Follicular variant papillary thyroid carcinoma in a pediatric population.

    abstract:BACKGROUND:Follicular variant of papillary thyroid carcinoma (FVPTC) has been shown to be an intermediate entity between papillary (PTC) and follicular/Hurtle cell (FTC) thyroid carcinoma in adults. However, the tumor characteristics and prognosis of FVPTCs has not been studied in the pediatric population and is the fo...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Lerner J,Goldfarb M

    更新日期:2015-11-01 00:00:00

  • Clinical practice guideline improves the treatment of sickle cell disease vasoocclusive pain.

    abstract:BACKGROUND:Pain is the most common complication of sickle cell disease requiring emergency department (ED) visits and hospitalization. A Clinical Practice Guideline (CPG) to manage acute sickle cell pain offers clinicians a standardized approach for the provision of evidence-based, cost-effective care. After CPG implem...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Morrissey LK,Shea JO,Kalish LA,Weiner DL,Branowicki P,Heeney MM

    更新日期:2009-03-01 00:00:00

  • DLK1, a serum marker for hepatoblastoma in young infants.

    abstract::Hepatoblastoma is a malignant pediatric liver tumor. The currently used diagnostic serum marker for hepatoblastoma, α-fetoprotein (AFP), is not always reliable in infants with hepatoblastoma, due to the physiologically elevated levels of AFP in this age group. In this report, we show that Delta-like 1 homolog (DLK1), ...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Falix FA,Aronson DC,Lamers WH,Hiralall JK,Seppen J

    更新日期:2012-10-01 00:00:00

  • Deficiencies in the Management of Iron Deficiency Anemia During Childhood.

    abstract::Limited high-quality evidence supports the management of iron deficiency anemia (IDA). To assess our institutional performance in this area, we retrospectively reviewed IDA treatment practices in 195 consecutive children referred to our center from 2006 to mid-2010. The majority of children were ≤4 years old (64%) and...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Powers JM,Daniel CL,McCavit TL,Buchanan GR

    更新日期:2016-04-01 00:00:00

  • Amifostine for children with medulloblastoma treated with cisplatin-based chemotherapy.

    abstract::In adult patients, amifostine appears to ameliorate cisplatin-related nephrotoxicity and ototoxicity. We assessed the safety and efficacy of amifostine in 11 children with newly diagnosed medulloblastoma/primitive neuroectodermal tumor treated with radiotherapy and vincristine, lomustine, and cisplatin. Amifostine was...

    journal_title:Pediatric blood & cancer

    pub_type: 临床试验,杂志文章


    authors: Fisher MJ,Lange BJ,Needle MN,Janss AJ,Shu HK,Adamson PC,Phillips PC

    更新日期:2004-12-01 00:00:00

  • Clinical, histologic, and genetic features of mesothelioma in a 7-year-old child.

    abstract::Malignant mesothelioma (MM) is a highly aggressive malignancy that is extremely rare in children. This case report documents a 7-year-old male without previous asbestos exposure with peritoneal MM that initially responded to chemotherapy with cisplatin and gemcitabine but ultimately metastasized to his chest. He was d...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Sugalski A,Davis M,Prasannan L,Saldivar V,Hung JY,Tomlinson GE

    更新日期:2013-01-01 00:00:00

  • A persistent epidural mass in a child with B-lineage ALL.

    abstract::Epidural spinal cord compression as the initial presentation of acute lymphoblastic leukemia (ALL) is a rare and serious complication. Extramedullary disease is rarely reported in patients with ALL. The most common sites are bone, followed by soft tissue, skin and lymph nodes. We describe a child with common B-lineage...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Molina B,Lassaletta A,Andion M,Gonzalez-Vicent M,López-Pino MA,Madero L

    更新日期:2010-10-01 00:00:00

  • Significant inconsistency among pediatric oncologists in the use of the neutropenic diet.

    abstract:BACKGROUND:The role of the neutropenic diet in the development of infections in oncology and stem cell transplant (SCT) patients is controversial. There is no data on the use of the neutropenic diet among pediatric oncologists. METHODS:A self-administered electronic survey was sent to 1,639 pediatric oncologists at 19...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Braun LE,Chen H,Frangoul H

    更新日期:2014-10-01 00:00:00

  • Modifying bone mineral density, physical function, and quality of life in children with acute lymphoblastic leukemia.

    abstract:BACKGROUND:The early effects of childhood acute lymphoblastic leukemia (ALL) include decreased physical function, bone mineral density (BMD/g/cm2 ), and health-related quality of life (HRQL). We assessed the capacity of a physical therapy and motivation-based intervention, beginning after diagnosis and continuing throu...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章,多中心研究,随机对照试验


    authors: Cox CL,Zhu L,Kaste SC,Srivastava K,Barnes L,Nathan PC,Wells RJ,Ness KK

    更新日期:2018-04-01 00:00:00

  • Do pregnancy characteristics contribute to rising childhood cancer incidence rates in the United States?

    abstract:BACKGROUND:Since 1975, childhood cancer incidence rates have gradually increased in the United States; however, few studies have conducted analyses across time to unpack this temporal rise. The aim of this study was to test the hypothesis that increasing cancer incidence rates are due to secular trends in pregnancy cha...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Kehm RD,Osypuk TL,Poynter JN,Vock DM,Spector LG

    更新日期:2018-03-01 00:00:00

  • Proton therapy for pediatric head and neck malignancies.

    abstract:PURPOSE:Pediatric head and neck malignancies are managed with intensive multimodality therapy. Proton beam therapy (PBT) may reduce toxicity by limiting exposure of normal tissue to radiation. In this study, we report acute toxicities and early outcomes following PBT for pediatric head and neck malignancies. MATERIALS...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Vogel J,Both S,Kirk M,Chao HH,Bagatell R,Li Y,Womer R,Balamuth N,Reilly A,Kurtz G,Lustig R,Tochner Z,Hill-Kayser C

    更新日期:2018-02-01 00:00:00

  • Imaging guidelines for children with Ewing sarcoma and osteosarcoma: a report from the Children's Oncology Group Bone Tumor Committee.

    abstract::The Children's Oncology Group (COG) is a multi-institutional cooperative group dedicated to childhood cancer research that has helped to increase the survival of children with cancer through clinical trials. These clinical trials include a standardized regimen of imaging examinations performed prior to, during, and fo...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章,实务指引


    authors: Meyer JS,Nadel HR,Marina N,Womer RB,Brown KL,Eary JF,Gorlick R,Grier HE,Randall RL,Lawlor ER,Lessnick SL,Schomberg PJ,Kailo MD

    更新日期:2008-08-01 00:00:00

  • Minor anomalies in children with hematological malignancies.

    abstract:BACKGROUND:Despite the presence of reports on correlation between major congenital defects and cancer, very few studies have investigated the frequency of minor anomalies in childhood malignancy. The aim of this study was to determine the prevalence of minor anomalies in children with hematological malignancy. PROCEDU...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Citak FE,Citak EC,Akkaya E,Kosan B,Ezer U,Kurekci AE

    更新日期:2011-02-01 00:00:00

  • Hepatoblastoma and hypoplastic kidneys: a new association.

    abstract::Both hepatoblastoma and hypoplastic kidneys are rare in children. A review of all patients with hepatoblastoma treated at our institution between 1993 and 2011 revealed three cases of hepatoblastoma occurring in children with hypoplastic kidneys and significantly impaired renal function. Two patients were treated with...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Chan R,Mascarenhas L,Venkatramani R

    更新日期:2014-08-01 00:00:00