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












  • Parent understanding of the risk of future limitations secondary to pediatric cancer treatment.

    abstract:BACKGROUND:Parents and physicians may have different understandings of a child's risk of future limitations due to cancer or cancer treatment. We evaluated alignment between parent- and physician-estimated risk of late effects. METHODS:We surveyed 352 parents of children with cancer within 12 weeks of diagnosis, and t...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Greenzang KA,Cronin AM,Kang T,Mack JW

    更新日期:2018-07-01 00:00:00

  • Anaphylactoid reaction to high-dose methotrexate and successful desensitization.

    abstract::Anaphylactic/anaphylactoid reaction to methotrexate (MTX) is uncommon. It may occur with the first dose (non-allergic reactions) or after a previous exposure to the drug (allergic or specific reactions). Desensitization has been shown effective in children with allergic-type reactions permitting the continuation of hi...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Oulego-Erroz I,Maneiro-Freire M,Bouzón-Alejandro M,Vázquez-Donsión M,Couselo JM

    更新日期:2010-09-01 00:00:00

  • Ifosfamide, gemcitabine, and vinorelbine is an effective salvage regimen with excellent stem cell mobilization in relapsed or refractory pediatric Hodgkin lymphoma.

    abstract::We describe 12 pediatric patients (8-16 years) with primary refractory (N = 6) or first relapse (N = 6) Hodgkin lymphoma (HL) treated with ifosfamide, gemcitabine, and vinorelbine (IGEV). The overall response rate to IGEV was 100%, with seven (58%) complete responses (CR) and five (42%) partial responses. Successful C...

    journal_title:Pediatric blood & cancer

    pub_type: 临床试验,杂志文章


    authors: Marr K,Ronsley R,Nadel H,Douglas K,Gershony S,Strahlendorf C,Davis JH,Deyell RJ

    更新日期:2020-04-01 00:00:00

  • Oral health and dental anomalies in patients treated for leukemia in childhood and adolescence.

    abstract:BACKGROUND:This study was conducted to evaluate oral health and dental anomalies in children treated for acute lymphoblastic leukemia (ALL) and to compare results with those of a group of healthy children matched for sex and age. PROCEDURE:Fifty-six children treated for ALL and 56 healthy controls were examined for de...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Maciel JC,de Castro CG Jr,Brunetto AL,Di Leone LP,da Silveira HE

    更新日期:2009-09-01 00:00:00

  • Severe H1N1-associated acute respiratory failure in immunocompromised children.

    abstract:BACKGROUND:Severe pandemic influenza A (H1N1) infection can lead to acute respiratory failure (ARF) with associated high mortality. Children with malignancy may be at higher risk of H1N1-associated ARF because of underlying primary disease or immunosuppression associated with chemotherapy. PROCEDURE:We describe the cl...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Elbahlawan L,Gaur AH,Furman W,Jeha S,Woods T,Norris A,Morrison RR

    更新日期:2011-10-01 00:00:00

  • An investigation of toxicities and survival in Hispanic children and adolescents with ALL: Results from the Dana-Farber Cancer Institute ALL Consortium protocol 05-001.

    abstract:PURPOSE:This study compared the relative incidence of treatment-related toxicities and the event-free and overall survival between Hispanic and non-Hispanic children undergoing therapy for acute lymphoblastic leukemia (ALL) on Dana-Farber Cancer Institute ALL Consortium protocol 05-001. PATIENTS AND METHODS:Secondary ...

    journal_title:Pediatric blood & cancer

    pub_type: 临床试验,杂志文章,多中心研究


    authors: Kahn JM,Cole PD,Blonquist TM,Stevenson K,Jin Z,Barrera S,Davila R,Roberts E,Neuberg DS,Athale UH,Clavell LA,Laverdiere C,Leclerc JM,Michon B,Schorin MA,Welch JJG,Sallan SE,Silverman LB,Kelly KM

    更新日期:2018-03-01 00:00:00

  • PET-guided biopsy with needle navigation facilitates diagnosis of angiosarcoma in neurofibromatosis type 1.

    abstract::Malignant degeneration frequently arises from preexisting plexiform neurofibroma in patients with neurofibromatosis type 1 (NF1). Image guided biopsy for diagnostic purposes, such as with CT guidance, can be technically challenging in these patients, as CT cannot distinguish malignant from benign areas within the same...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Koethe Y,Widemann BC,Hajjar F,Wood BJ,Venkatesan AM

    更新日期:2013-12-01 00:00:00

  • Epidemiologic profile of symptomatic gastroenteritis in pediatric oncology patients receiving chemotherapy.

    abstract:BACKGROUND:Patients with cancer who receive intensive chemotherapeutic regimens are subject to profound immunosuppression and are susceptible to an extended array of pathogens. PROCEDURE:The infectious causes of symptomatic gastroenteritis as evidenced by diarrhea +/- fever, vomiting, and abdominal colic in children f...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: El-Mahallawy HA,El-Din NH,Salah F,El-Arousy M,El-Naga SA

    更新日期:2004-04-01 00:00:00

  • Bone mineral density is normal in children with Fanconi anemia.

    abstract:BACKGROUND:Conflicting data exist regarding whether low bone mineral density (BMD) is associated with Fanconi anemia (FA). The current study identified the frequency of low BMD in FA, expecting low BMD even in childhood and before HCT. PROCEDURE:Thirty-seven FA patients (18 prior HCT, 19 no prior HCT), participating i...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Rose SR,Rutter MM,Mueller R,Harris M,Hamon B,Bulluck AF,Smith FO

    更新日期:2011-12-01 00:00:00

  • Severe persistent bone marrow failure following therapy with 2-chlorodeoxyadenosine for relapsing juvenile xanthogranuloma of the brain.

    abstract::2-Chlorodeoxyadenosine (2-CdA) has been successfully used in children to treat refractory Langerhans cell histiocytosis and juvenile xanthogranuloma (JXG) as salvage therapy. Although 2-CdA is generally well-tolerated, with temporary myelosuppression as the primary dose-limiting toxicity, prolonged myelosuppressive, a...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Yamada K,Yasui M,Sawada A,Inoue M,Nakayama M,Kawa K

    更新日期:2012-02-01 00:00:00

  • Validation of the school age self-administered pediatric bleeding questionnaire (Self-PBQ) in children aged 8-12 years.

    abstract:BACKGROUND:In the pediatric population, pathologic bleeding is often challenging to identify. The pediatric bleeding questionnaire (PBQ) was developed as a screening tool for von Willebrand disease (VWD) but was designed to be self-completed by children above 12 years of age. The study objective was to determine whethe...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Bui J,Martyres D,James PD,Grabell J,Wu J,Steele M,Silva M,Rand ML,Blanchette VS,Barrowman N,Klaassen RJ

    更新日期:2019-06-01 00:00:00

  • Homestead together: Pediatric palliative care telehealth support for rural children with cancer during home-based end-of-life care.

    abstract:BACKGROUND:Children with terminal cancer and their families describe a preference for home-based end-of-life care. Inadequate support outside of the hospital is a limiting factor in home location feasibility, particularly in rural regions lacking pediatric-trained hospice providers. METHODS:The purpose of this longitu...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Weaver MS,Shostrom VK,Neumann ML,Robinson JE,Hinds PS

    更新日期:2021-02-01 00:00:00

  • Eutectic mixture of lidocaine and prilocaine versus 1% lidocaine injection for lumbar punctures in pediatric oncology patients.

    abstract:BACKGROUND:The role of local analgesics for lumbar punctures (LPs) in pediatric oncology patients has not been specifically studied. AIM:To compare the efficacy of eutectic mixture of local anesthetics (EMLA) cream to 1% lidocaine injection for LPs. METHOD:This was a retrospective observational study of all patients ...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Cruickshank A,Qeadan F,Kuttesch JF,Agarwal HS

    更新日期:2019-11-01 00:00:00

  • Prognostic impact of cytogenetic abnormalities in children and adolescents with mature B-cell non-Hodgkin lymphoma: A report from the Japanese Pediatric Leukemia/Lymphoma Study Group (JPLSG).

    abstract::Little information is available on cytogenetic abnormalities and their prognostic importance in childhood mature B-cell non-Hodgkin lymphoma (B-NHL). We performed a review of 79 abnormal karyotypes in childhood B-NHL treated by a uniform protocol. Del(17p) was independently associated with significantly inferior event...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Sekimizu M,Mori T,Kikuchi A,Mitsui T,Sunami S,Kobayashi R,Fujita N,Inada H,Takimoto T,Saito AM,Watanabe T,Fujimoto J,Nakazawa A,Ohshima K,Horibe K,Tsurusawa M,Lymphoma Committee of the Japanese Pediatric Leukemia\/Lymphom

    更新日期:2015-07-01 00:00:00

  • Nephroblastoma: does the decrease in tumor volume under preoperative chemotherapy predict the lymph nodes status at surgery?

    abstract:BACKGROUND:Partial nephrectomy (NSS) for unilateral nephroblastoma may be beneficial, although in case of regional lymph node (LN) involvement, radiotherapy counteracts the functional benefit of NSS. The aim is to verify whether decrease of tumor volume under preoperative chemotherapy implies clearance of regional LN. ...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Godzinski J,van Tinteren H,de Kraker J,Graf N,Bergeron C,Heij H,von Schweinitz D,Fuchs J,Cecchetto G,Audry G,Gauthier F,Sandstedt B,SIOP Nephroblastoma Trial & Study Committee.

    更新日期:2011-12-15 00:00:00

  • Successful treatment of a child with T/myeloid acute bilineal leukemia associated with TLX3/BCL11B fusion and 9q deletion.

    abstract::Acute bilineal leukemias are rare and are commonly associated with t(9;22) and MLL abnormalities. Herein, we report a pediatric case of bilineal T/myeloid acute leukemia associated with del (9q)(q13q22) and TLX3/BCL11B fusion due to the cryptic t(5;14)(q35;32). FISH studies confirmed the TLX3/BCL11B fusion in both the...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Oliveira JL,Kumar R,Khan SP,Law ME,Erickson-Johnson M,Oliveira AM,Ketterling RP,Dogan A

    更新日期:2011-03-01 00:00:00

  • Topotecan by 21-day continuous infusion in children with relapsed or refractory solid tumors: a Children's Oncology Group study.

    abstract:PURPOSE:The Children's Oncology Group conducted a phase II trial of 21-day continuous infusion topotecan to determine the response rate in pediatric patients with recurrent or refractory malignant solid tumors. PROCEDURE:Patients with Ewing sarcoma family of tumors (ESFT), osteosarcoma (OS), soft tissue sarcomas (STS)...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Hawkins DS,Bradfield S,Whitlock JA,Krailo M,Franklin J,Blaney SM,Adamson PC,Reaman G

    更新日期:2006-11-01 00:00:00

  • Growth patterns in children with sickle cell anemia during puberty.

    abstract:BACKGROUND:Previous studies of children with homozygous sickle cell anemia (SCA) show impaired growth and maturation. The correlation of this suboptimal growth with metabolic and hematological factors during puberty is poorly understood. PROCEDURE:We studied a group of pre-adolescent children with SCA (19 males, 14 fe...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Rhodes M,Akohoue SA,Shankar SM,Fleming I,Qi An A,Yu C,Acra S,Buchowski MS

    更新日期:2009-10-01 00:00:00

  • Lack of mortality in 22 children with sickle cell anemia and severe malarial anemia.

    abstract::Retrospective studies suggest that there is high mortality in children with sickle cell anemia (SCA) and severe malaria. We assessed mortality in Ugandan children with severe malarial anemia (SMA, n = 232) or cerebral malaria (CM, n = 267) by sickle cell hemoglobin genotype. Admission and 2-year follow-up mortality di...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Opoka RO,Bangirana P,Idro R,Shabani E,Namazzi R,John CC

    更新日期:2018-01-01 00:00:00

  • A case of natural killer cell lymphoma presenting with bilateral pleural effusions and hemophagocytic lymphohistocytosis.

    abstract::Natural killer (NK) cell lymphoma of lung is very rare. We report a case of NK cell lymphoma presented in a 17-year-old male with bilateral pleural effusions and hemophagocytic lymphohistocytosis. Morphologic and immunohistochemical tests revealed an association of NK cell lymphoma with Epstein-Barr virus. A literatur...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Tai CF,Chang LY,Lin DT,Lin KH,Jou ST,Yang YL

    更新日期:2009-05-01 00:00:00

  • Multimodality treatment of osteosarcoma: radiation in a high-risk cohort.

    abstract:PURPOSE:Chemotherapy during radiation and/or bone-seeking radioisotope therapy (153-samarium; 1 mCi/kg) during radiation may improve osteosarcoma cancer control. PATIENTS AND METHODS:We analyzed our preliminary radiation experience in high-risk, metastatic, and/or recurrent patients during a consecutive period of 20 m...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Mahajan A,Woo SY,Kornguth DG,Hughes D,Huh W,Chang EL,Herzog CE,Pelloski CE,Anderson P

    更新日期:2008-05-01 00:00:00

  • Intravenous ferric carboxymaltose for iron deficiency anemia or iron deficiency without anemia after poor response to oral iron treatment: Benefits and risks in a cohort of 144 children and adolescents.

    abstract:OBJECTIVE:The objective of this single-center observational study was to determine the clinical and hematologic responses to intravenous ferric carboxymaltose (FCM) in a cohort of pediatric patients with poor response to oral iron therapy. The occurrence of adverse events was systematically recorded for up to 96 hours ...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Ozsahin H,Schaeppi M,Bernimoulin M,Allard M,Guidard C,van den Ouweland F

    更新日期:2020-10-01 00:00:00

  • Immunotherapy for osteosarcoma: Where do we go from here?

    abstract::Osteosarcoma is the most common bone tumor in children and young adults, with few advances in survival and treatment, especially for metastatic disease, in the last 30 years. Recently, immunotherapy has begun to show promise in various adult cancers, but the utility of this approach for osteosarcoma remains relatively...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章,评审


    authors: Wedekind MF,Wagner LM,Cripe TP

    更新日期:2018-09-01 00:00:00

  • Efficacy of surgery combined with postoperative 125 I interstitial brachytherapy for treatment of acinic cell carcinoma of the parotid gland in children and adolescents.

    abstract:BACKGROUND:Acinic cell carcinoma (AciCC) is rare in children; therefore, reaching a consensus on its management is challenging and radiotherapy is limited by concerns about long-term toxicity. The purpose of this study is to analyze the effectiveness and safety of surgery plus postoperative 125 I interstitial brachythe...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Li J,Zhang J,Lyu XM,Huang MW,Zheng L,Zhang JG

    更新日期:2020-07-01 00:00:00

  • Transcranial Doppler screening in Nigerian children with sickle cell disease: A 10-year longitudinal study on the SPPIBA cohort.

    abstract:BACKGROUND:Primary stroke prevention programmes for children with sickle cell disease (SCD) have been shown to be feasible interventions in resource-poor countries. Different hydroxyurea (HU) regimens have been utilised in ameliorating the severity of SCD. OBJECTIVE:To determine the long-term outcomes of the stroke pr...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Lagunju IA,Labaeka A,Ibeh JN,Orimadegun AE,Brown BJ,Sodeinde OO

    更新日期:2021-02-01 00:00:00

  • Thiotepa/topotecan/carboplatin with autologous stem cell rescue in recurrent/refractory/poor prognosis pediatric malignancies of the central nervous system.

    abstract:BACKGROUND:Thiotepa and carboplatin are known to be active in central nervous system tumors. Topotecan potentiates the anti-cancer effects of alkylators and crosses the blood-brain barrier. We present ten patients with recurrent or progressive central nervous system malignancies treated on a myeloablative regimen using...

    journal_title:Pediatric blood & cancer

    pub_type: 临床试验,杂志文章


    authors: Gilheeney SW,Khakoo Y,Souweidane M,Wolden S,Boulad F,Dunkel IJ

    更新日期:2010-04-01 00:00:00

  • Changes in hepatitis B antibody status after chemotherapy in children with acute lymphoblastic leukemia.

    abstract:BACKGROUND:Children with cancer may be at an increased risk of infection with hepatitis B virus (HBV) when levels of hepatitis B antibodies are reduced owing to chemotherapy-induced immunosuppression. This study evaluated the changes in HBV antibody status and HBV infections after chemotherapy in children with acute ly...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Choi YB,Lee NH,Yi ES,Kim YJ,Koo HH

    更新日期:2019-12-01 00:00:00

  • Stage 1 testing and pharmacodynamic evaluation of the HSP90 inhibitor alvespimycin (17-DMAG, KOS-1022) by the pediatric preclinical testing program.

    abstract:BACKGROUND:Alvespimycin (17-DMAG, KOS-1022), a potent small-molecule inhibitor of the protein chaperone Hsp90, is being developed as an anticancer agent because of the multiple Hsp90 client proteins involved in cancer cell growth and survival. PROCEDURES:Alvespimycin was tested against the in vitro panel of the Pediat...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Smith MA,Morton CL,Phelps DA,Kolb EA,Lock R,Carol H,Reynolds CP,Maris JM,Keir ST,Wu J,Houghton PJ

    更新日期:2008-07-01 00:00:00

  • Long-term cause-specific mortality among five-year survivors of childhood cancer.

    abstract:BACKGROUND:The purpose of our study was to assess long-term cause-specific mortality of 5-year childhood cancer survivors. PROCEDURE:The study population consisted of 1,378 patients who had been treated for childhood cancer in The Netherlands between 1966 and 1996 and survived at least 5 years; follow-up was complete ...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Cardous-Ubbink MC,Heinen RC,Langeveld NE,Bakker PJ,Voûte PA,Caron HN,van Leeuwen FE

    更新日期:2004-06-01 00:00:00

  • A man-made disease: Fetal neonatal alloimmune thrombocytopenia due to incompatibility between oocyte donor and gestational mother.

    abstract::The incompatibility causing fetal and neonatal alloimmune thrombocytopenia (FNAIT) results from a fetus inheriting a paternal human platelet antigen (HPA), which is different from the maternal HPA. We present a unique case of FNAIT in a pregnancy involving an oocyte recipient mother with Turner syndrome. This is the f...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Barg AA,Ifrah AD,Strauss T,Simchen MJ,Orvieto R,Rosenberg N,Kenet G

    更新日期:2017-08-01 00:00:00