Reproductive intentions in mothers of young children with sickle cell disease.


BACKGROUND:Sickle cell disease (SCD) is an autosomal recessive hemoglobinopathy associated with morbidity and mortality. We sought to understand family planning intentions of parents of young children with SCD including the awareness of three reproductive options (adoption, in vitro fertilization with egg/sperm donation [IVFD], in vitro fertilization [IVF] with preimplantation genetic testing [IVF/PGT]) to decrease the risk of having a child with SCD. PROCEDURE:Qualitative, semistructured, one-on-one interviews with 18 female parents of young children with SCD at an urban, tertiary care pediatric hospital. RESULTS:Half of the parents knew their hemoglobinopathy status or their partner's status before pregnancy. Eight parents chose to have no further children because of fear of SCD in another child. Awareness of reproductive options prior to study enrollment was limited. After brief introduction, 7 parents would consider adoption, 2 IVFD, and 10 IVF/PGT. Desire for a biological child, fear of parental jealousy, ethical or religious considerations, and cost affected the acceptability of these options. Participants universally wanted information about reproductive options available to others prior to pregnancy. CONCLUSIONS:There is limited awareness and variable acceptability of alternative reproductive options available to decrease the risk of a future child having SCD. Participants universally endorsed the need for education regarding hemoglobinopathy status, SCD, and reproductive options prior to pregnancy because for many participants having a child with SCD affected their reproductive intentions. Educational interventions to ensure informed reproductive decision making should be sensitive to desires for a biological child, and ethical and financial considerations.


Pediatr Blood Cancer


Pediatric blood & cancer


Schultz CL,Tchume-Johnson T,Jackson T,Enninful-Eghan H,Schapira MM,Smith-Whitley K




Has Abstract


2020-05-01 00:00:00












  • Intensified Chemotherapy With Dexrazoxane Cardioprotection in Newly Diagnosed Nonmetastatic Osteosarcoma: A Report From the Children's Oncology Group.

    abstract:BACKGROUND:Although chemotherapy has improved outcome of osteosarcoma, 30-40% of patients succumb to this disease. Survivors experience substantial morbidity and mortality from anthracycline-induced cardiotoxicity. We hypothesized that the cardioprotectant dexrazoxane would (i) support escalation of the cumulative doxo...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Schwartz CL,Wexler LH,Krailo MD,Teot LA,Devidas M,Steinherz LJ,Goorin AM,Gebhardt MC,Healey JH,Sato JK,Meyers PA,Grier HE,Bernstein ML,Lipshultz SE

    更新日期:2016-01-01 00:00:00

  • A systematic review of dental late effects in survivors of childhood cancer.

    abstract::Survivors of childhood cancer are at risk for dental late effects. This systematic review summarizes associations between treatment exposures and dental late effects among survivors of childhood cancer. We included investigations with at least 20 study participants conducted for 2 or more years after completion of chi...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章,评审


    authors: Gawade PL,Hudson MM,Kaste SC,Neglia JP,Constine LS,Robison LL,Ness KK

    更新日期:2014-03-01 00:00:00

  • Influence of pediatric cancer-related financial burden on parent distress and other stress-related symptoms.

    abstract:BACKGROUND:Pediatric cancer-induced financial burden is source of stress for parents, particularly mothers, single parents, and parents with lower incomes. This financial burden has been linked to poorer family quality of life (QOL) in terms of new onset material hardships, and could also affect individual QOL in terms...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Santacroce SJ,Kneipp SM

    更新日期:2020-03-01 00:00:00

  • Treatment of infantile choriocarcinoma of the liver.

    abstract::Primary choriocarcinoma of the liver is an extremely rare childhood malignancy frequently associated with clinical instability at initial presentation. It often mimics other benign and malignant childhood liver tumors. Prompt diagnosis and initiation of treatment are necessary to attain a successful outcome. We descri...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Yoon JM,Burns RC,Malogolowkin MH,Mascarenhas L

    更新日期:2007-07-01 00:00:00

  • Insights on neoplastic stem cells from gel-based proteomics of childhood germ cell tumors.

    abstract:BACKGROUND:Childhood germ cell tumors (cGCTs), believed to arise from transformed primordial germ cells by an unknown mechanism, provide a unique model system for investigating cell signaling, pluripotency, and the microenvironment of neoplastic stem cells (NSCs) in vivo. This is the first report of proteomics of cGCTs...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Haskins WE,Eedala S,Jadhav YL,Labhan MS,Pericherla VC,Perlman EJ

    更新日期:2012-05-01 00:00:00

  • Religious coping and the use of prayer in children with sickle cell disease.

    abstract:BACKGROUND:While adolescents and adults with sickle cell disease (SCD) have reported using religion to cope with SCD, there is no data examining religious coping in young children with SCD. The purpose of this qualitative study was to: (1) describe the types of religious coping used by children with SCD; (2) describe t...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Cotton S,Grossoehme D,McGrady ME

    更新日期:2012-02-01 00:00:00

  • Models of care for survivors of childhood cancer.

    abstract::With improvements in therapy for childhood cancer, the expectation that most childhood cancer patients will survive and enter adulthood is a reality. There is clear evidence that survivors are at risk for adverse health-related long-term sequelae associated with their cancer and its treatment, requiring appropriate he...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Friedman DL,Freyer DR,Levitt GA

    更新日期:2006-02-01 00:00:00

  • Treatment of children with refractory anemia: the Japanese Childhood MDS Study Group trial (MDS99).

    abstract:BACKGROUND:Although hematopoietic stem cell transplantation (HSCT) is offered as a curative therapy for pediatric myelodysplastic syndrome (MDS), it may cause severe complications and mortality. Several reports have shown the efficacy of immunosuppressive therapy (IST) in adult patients with refractory anemia (RA), but...

    journal_title:Pediatric blood & cancer

    pub_type: 临床试验,杂志文章,多中心研究


    authors: Hasegawa D,Manabe A,Yagasaki H,Ohtsuka Y,Inoue M,Kikuchi A,Ohara A,Tsuchida M,Kojima S,Nakahata T,Japanese Childhood MDS Study Group.

    更新日期:2009-12-01 00:00:00

  • Langerhans cell histiocytosis masquerading as tuberculosis: a diagnostic dilemma resulting in inappropriate anti-tubercular therapy.

    abstract::Langerhans cell histiocytosis is known to mimic many other conditions. We present two patients where anti-tubercular therapy was instituted when clinical and radiological features suggested tuberculosis. The correct diagnosis of histiocytosis was reached only on further work-up including immunohistochemistry following...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Sharma P,Dhingra KK,Sural S,Mandal AK,Singh T

    更新日期:2009-07-01 00:00:00

  • Detectable minimal residual disease before allogeneic hematopoietic stem cell transplantation predicts extremely poor prognosis in children with acute lymphoblastic leukemia.

    abstract:BACKGROUND:The level of minimal residual disease (MRD) prior to allogeneic hematopoietic stem cell transplantation (HSCT) has been shown to be an independent prognostic factor for outcome of pediatric patients with high-risk acute lymphoblastic leukemia (ALL). Retrospective studies which used (semi-) quantitation of cl...

    journal_title:Pediatric blood & cancer

    pub_type: 临床试验,杂志文章


    authors: Sramkova L,Muzikova K,Fronkova E,Krejci O,Sedlacek P,Formankova R,Mejstrikova E,Stary J,Trka J

    更新日期:2007-01-01 00:00:00

  • Good prognosis of localized osteosarcoma in young patients treated with limb-salvage surgery and chemotherapy.

    abstract:BACKGROUND:The objective of this report was to estimate long-term outcome and prognostic factors in children and adolescents with osteosarcoma. A large group of osteosarcoma patients were analyzed at our national oncology center. PROCEDURE:To evaluate the efficacy of surgery and multiagent chemotherapy for treating os...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Hegyi M,Semsei AF,Jakab Z,Antal I,Kiss J,Szendroi M,Csoka M,Kovacs G

    更新日期:2011-09-01 00:00:00

  • A family with Hoyeraal-Hreidarsson syndrome and four variants in two genes of the telomerase core complex.

    abstract::We describe an African American family with Hoyeraal-Hreidarrson syndrome (HHS) in which 2 TERT mutations (causing P530L and A880T amino acid changes) and two in the DKC1 variants (G486R and A487A) were segregating. Both genes are associated with dyskeratosis congenita and HHS. It was important to determine the import...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Vogiatzi P,Perdigones N,Mason PJ,Wilson DB,Bessler M

    更新日期:2013-06-01 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

  • Gender affects survival for medulloblastoma only in older children and adults: a study from the Surveillance Epidemiology and End Results Registry.

    abstract:BACKGROUND:Males have a higher incidence of medulloblastoma (MB) than females, but the effect of gender on survival is unclear. Studies have yielded conflicting results, possibly due to small sample sizes or differences in how researchers defined MB. We aimed to determine the effect of gender on survival in MB using a ...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Curran EK,Sainani KL,Le GM,Propp JM,Fisher PG

    更新日期:2009-01-01 00:00:00

  • The effect of central nervous system involvement and irradiation in childhood acute lymphoblastic leukemia: Lessons from the NOPHO ALL-92 and ALL-2000 protocols.

    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


    authors: Taskinen M,Oskarsson T,Levinsen M,Bottai M,Hellebostad M,Jonsson OG,Lähteenmäki P,Schmiegelow K,Heyman M

    更新日期:2017-02-01 00:00:00

  • Adherence to prompt fever evaluation in children with sickle cell disease and the health belief model.

    abstract:BACKGROUND:Children with sickle cell disease (SCD) are at increased risk of death from invasive bacterial infections. Emergent evaluation of fever allows early treatment of potentially fatal infections. Limited data exist regarding caregiver adherence to physician recommendations of prompt medical evaluation of fever i...

    journal_title:Pediatric blood & cancer

    pub_type: 临床试验,杂志文章


    authors: Schultz CL,Tchume-Johnson T,Schapira MM,Bellamy S,Smith-Whitley K,Ellison A

    更新日期:2015-11-01 00:00:00

  • Monosomy 7/del (7q) in inherited bone marrow failure syndromes: A systematic review.

    abstract::Inherited bone marrow failure syndromes (IBMFS) are rare cancer predisposition syndromes with an especially high risk of transformation to myelodysplastic syndrome (MDS) and/or acute myeloid leukemia (AML). We performed a retrospective systematic review of reported MDS/AML arising in the eight most common IBMFS to det...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章,评审


    authors: Pezeshki A,Podder S,Kamel R,Corey SJ

    更新日期:2017-12-01 00:00:00

  • Preventing Infections in Sickle Cell Disease: The Unfinished Business.

    abstract::While encapsulated bacterial agents, particularly Streptococcus pneumoniae, are recognized as important microbes that are associated with serious illness in hosts with sickle cell disease (SCD), multiple pathogens are implicated in infectious manifestations of SCD. Variations in clinical practice have been an obstacle...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章,评审


    authors: Obaro SK,Iroh Tam PY

    更新日期:2016-05-01 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

  • Outcomes of a pediatric surgical oncology fellowship in a pediatric cancer institution.

    abstract::Surgery plays an important role as part of the treatment plan in most children with malignant solid tumors in regards to initial biopsy, upfront resection, and delayed resection. Surgeons also play a critical role in the treatment of surgical complications that may arise during medical treatment. The pediatric surgica...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Fernandez-Pineda I,Sanders D,Rao BN,Shochat SJ,Davidoff AM

    更新日期:2017-10-01 00:00:00

  • Prevalence and correlates of adherence to skin examination among adolescent and young adult survivors of melanoma from the Project Forward Study.

    abstract:BACKGROUND:Melanoma is a common cancer among adolescents and young adults (AYAs), yet adherence to recommended surveillance and factors related to adherence are not well understood in this population. This study assessed the prevalence and correlates of physician-conducted skin examination (PSE) and skin self-examinati...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Miller KA,Wojcik KY,Cockburn MG,In GK,Hamilton AS,Milam JE

    更新日期:2020-03-01 00:00:00

  • Survival after recurrence of osteosarcoma: a 20-year experience at a single institution.

    abstract:BACKGROUND:Approximately one-third of patients with osteosarcoma who have a complete response to their initial treatment can be expected to relapse. It is important to define what host, tumor, or treatment characteristics determine outcome after relapse. We present findings in 59 patients treated at our institution fro...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Crompton BD,Goldsby RE,Weinberg VK,Feren R,O'Donnell RJ,Ablin AR

    更新日期:2006-09-01 00:00:00

  • Contributing factors and outcomes of treatment refusal in pediatric oncology in Germany.

    abstract:BACKGROUND:In Germany, about 1,800 new cases of pediatric cancer under 15 years of age are diagnosed each year and survival rates approach 80%. Although treatment is covered by health insurance and is thus available for all patients at no cost, treatment refusal and treatment discontinuation have been observed. However...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Zuzak TJ,Kameda G,Schütze T,Kaatsch P,Seifert G,Bailey R,Längler A

    更新日期:2016-10-01 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

  • Severe acute hypertriglyceridemia during acute lymphoblastic leukemia induction successfully treated with plasmapheresis.

    abstract::Children suffering from Acute Lymphoblastic Leukaemia (ALL) treated with asparaginase and corticosteroids are at risk of developing severe lipid abnormalities. The authors report the case of a 10-year-old male with extremely high plasma triglyceride concentrations (4,000 mg/dl) during the induction phase of ALL associ...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Ridola V,Buonuomo PS,Maurizi P,Putzulu R,Annunziata ML,Pietrini D,Riccardi R

    更新日期:2008-02-01 00:00:00

  • Sickle-cell disease in California: a population-based description of emergency department utilization.

    abstract:BACKGROUND:Acute and chronic clinical manifestations of sickle-cell disease (SCD) lead to significant healthcare utilization, especially of the emergency department (ED). Limited population-level data are available in SCD with the ability to connect patients to visits, leaving us with minimal description of utilization...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章,多中心研究


    authors: Wolfson JA,Schrager SM,Coates TD,Kipke MD

    更新日期:2011-03-01 00:00:00

  • Risk stratification based on the clinical factors at diagnosis is closely related to the survival of localized osteosarcoma.

    abstract:BACKGROUND:Survival of osteosarcoma patients has reached a plateau with the addition of chemotherapy and in part predicted based on histologic response. Risk-adapted therapy might be an alternative approach. We aimed to identify risk groups using clinical variables available at time of diagnosis in order to better pred...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Lee JA,Kim MS,Kim DH,Lim JS,Park KD,Song WS,Cho WH,Lee SY,Jeon DG

    更新日期:2009-03-01 00:00:00

  • Initial testing (stage 1) of temozolomide by the pediatric preclinical testing program.

    abstract:BACKGROUND:The DNA methylating agent temozolomide was developed primarily for treatment of glioblastoma. However, preclinical data have suggested a broader application for treatment of childhood cancer. Temozolomide was tested against the PPTP solid tumor and ALL models. PROCEDURES:Temozolomide was tested against the ...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Keir ST,Maris JM,Reynolds CP,Kang MH,Kolb EA,Gorlick R,Lock R,Carol H,Morton CL,Wu J,Kurmasheva RT,Houghton PJ,Smith MA

    更新日期:2013-05-01 00:00:00

  • Palliative radiotherapy for pediatric patients: Parental perceptions of indication, intent, and outcomes.

    abstract:OBJECTIVES:Palliative radiation therapy (pRT) is often used to improve quality of life for pediatric patients. Though palliative doses are generally lower than those for cure, pRT may still introduce undesirable effects. The decision to pursue additional therapy for a child may be challenging and depends on parents' kn...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章


    authors: Lee BK,Boyle PJ,Zaslowe-Dude C,Wolfe J,Marcus KJ

    更新日期:2020-01-01 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