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  • 1
    Online Resource
    Online Resource
    American Society of Hematology ; 2014
    In:  Blood Vol. 124, No. 21 ( 2014-12-06), p. 1271-1271
    In: Blood, American Society of Hematology, Vol. 124, No. 21 ( 2014-12-06), p. 1271-1271
    Abstract: Introduction: Reproductive system injury, particularly ovarian failure, can be a devastating consequence of cancer treatment for female childhood cancer survivors. Recent advances in reproductive technology offer new fertility preservation techniques such as oocyte and ovarian tissue cryopreservation in addition to ovarian transposition and embryo cryopreservation. With rapid expansion of these reproductive technologies, it is imperative that we understand the personal perspectives regarding fertility of young female cancer patients. Better understanding of their attitudes will enable care providers to better counsel patients and families about options. We designed our study to evaluate the perspectives of female adolescent and young adult childhood cancer survivors regarding (a) fertility preservation procedures at the time of cancer diagnosis and (b) their prioritization of life goals, including fertility and motherhood. Methods: This study was a cross-sectional survey of female adolescent and young adult cancer survivors between 15-25 years of age at Hasbro Children's Hospital. Surveys were mailed to participants and followed with a reminder postcard and $5 incentive for participation. Written informed consent and assent were obtained. The primary study outcomes were responses to: (1) potential interest in fertility-sparing surgery at cancer diagnosis and (2) whether they would have waited to start cancer treatment if it increased future chances of becoming pregnant. Covariates included demographics (age at diagnosis, current age, race, ethnicity, education level) as well as prioritization of life goals, including fertility and motherhood, on a Likert scale from 0-5. Stata 12.0 (College Station, TX) was used to conduct chi-squared or t-tests for bivariate analysis. Logistic regression was used to calculate crude and adjusted odds ratios. Results: Sixty-five completed surveys were returned, with a 42% response rate. The mean age of subjects was 20.1 years (SD, 2.8). The majority (83.1%) were White, and non-Hispanic (92%). The most common participant cancer diagnoses were acute lymphoblastic leukemia, brain tumors, sarcomas and neuroblastoma. After adjusting for confounders including age at diagnosis and race, the odds of wanting surgery was higher (OR 2.41, 95% CI 1.42-4.09) for those who ranked pregnancy highly ( 〉 4) and for those who ranked being a mother highly (OR 2.62, 95% CI 1.46-4.69) vs. those who did not. The adjusted odds of being willing to postpone cancer treatment for those who ranked pregnancy and motherhood highly ( 〉 4) also remained statistically significant (OR 2.81, 95% CI 1.15-6.90; OR 3.73, 95% CI 1.14-12.6), respectively. Conclusion: Fertility and motherhood are important to female adolescent and young adult childhood cancer survivors. This study shows these young women would be interested in pursuing fertility preservation procedures at the time of cancer diagnosis, even if it meant a delay in starting cancer treatment. Pediatric oncologists should use this information to advise patients and families regarding fertility preservation options. A caveat remains however that patients would need to be counseled regarding the risks of such decisions in consideration of their specific illness. Disclosures No relevant conflicts of interest to declare.
    Type of Medium: Online Resource
    ISSN: 0006-4971 , 1528-0020
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    Language: English
    Publisher: American Society of Hematology
    Publication Date: 2014
    detail.hit.zdb_id: 1468538-3
    detail.hit.zdb_id: 80069-7
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  • 2
    Online Resource
    Online Resource
    American Society of Clinical Oncology (ASCO) ; 2017
    In:  Journal of Clinical Oncology Vol. 35, No. 15_suppl ( 2017-05-20), p. e22019-e22019
    In: Journal of Clinical Oncology, American Society of Clinical Oncology (ASCO), Vol. 35, No. 15_suppl ( 2017-05-20), p. e22019-e22019
    Abstract: e22019 Background: 30% of male cancer patients receive gonadotoxic therapy that results in infertility. Research exploring male cancer survivors’ attitudes regarding risk of infertility has focused on adults. To understand how AYA survivors perceive their risk of fertility, a cross sectional survey was conducted of male AYA survivors of pediatric cancer. Methods: After IRB approval, the home institution’s database was queried to identify subjects. Eligibility criteria included male survivors between the ages of 15-25 years who had completed treatment in the last 5 years. A self-report survey was designed to assess perspectives of male survivors of pediatric cancer on survivorship with a focus on fertility. Descriptive analysis was performed for all demographic variables collected. To identify whether there was an association between specific demographic variables on survivors’ perspectives regarding their fertility, Fisher’s Exact Test was used (cut-off p-value: 0.05). Results: 33 patients enrolled. Two were deemed ineligible (n = 31). Median age was 20 yrs. Disease and treatment demographics encompassed a wide range of diagnoses and therapy. Subjects were evenly divided as to whether they expected difficulty siring a successful pregnancy. No demographic variable was significantly associated with survivors’ belief that they would have difficulty. A majority recalled being informed during treatment that they may have difficulty siring a pregnancy and having been offered sperm cryopreservation. Of the 22 patients who did not participate in cryopreservation, 12 reported they would have done so to protect their fertility; one would not. Subjects were split as to whether they would have waited to start treatment to allow for cryopreservation. Conclusions: Male survivors of pediatric malignancy are concerned with their future fertility and are informed regarding their risk. Male patients should be counseled regarding their fertility risk and options for fertility preservation. [Table: see text]
    Type of Medium: Online Resource
    ISSN: 0732-183X , 1527-7755
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    Language: English
    Publisher: American Society of Clinical Oncology (ASCO)
    Publication Date: 2017
    detail.hit.zdb_id: 2005181-5
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  • 3
    In: Journal of Clinical Oncology, American Society of Clinical Oncology (ASCO), Vol. 39, No. 15_suppl ( 2021-05-20), p. 10025-10025
    Abstract: 10025 Background: Poverty is associated with inferior psychosocial function among parents of children with cancer. Severe parental distress during treatment predicts future poor mental health for both parents and children. It is also associated with impaired parental cognitive bandwidth and executive function, which may have implications for treatment adherence. Efforts to identify poverty-exposures amenable to intervention are essential to improving survivorship quality of life for the 〉 90% of children with acute lymphoblastic leukemia (ALL) who will be long-term survivors. Household material hardship (HMH) is a targetable poverty exposure defined as at least 1 of 3 unmet basic needs including food, housing, or utilities. Dana-Farber Cancer Institute (DFCI) ALL Consortium trial 16-001 is the first pediatric oncology clinical trial to systematically evaluate HMH. We investigated the hypothesis that HMH exposure independently predicts severe parent psychological distress during ALL therapy. Methods: Patients with newly diagnosed ALL ages 1-17 years were enrolled on the DFCI 16-001 embedded HMH cohort study at 8 U.S. and Canadian centers. Secondary interim analyses used baseline (within 32-days of trial enrollment) and 6-mos parent-reported sociodemographic data, the Kessler-6 (K6) Psychological Distress scale, and trial-collected child and disease data. Severe psychological distress was defined as a K6 〉 = 13. Multivariable cox regression evaluated baseline HMH-exposure and parent distress at baseline and 6-mos adjusting for child’s initial ALL risk group (Very High Risk (VHR) vs other) and marital status (single vs dual parent). Results: Among 258 families with evaluable data, 34% reported baseline HMH. Families were predominantly English-speaking (54%) dual parent households (71%). Children were a median of 5.7 years (IQR 1.0-17.99) at diagnosis and predominantly non-Hispanic white (66%) with expected disease distribution by immunophenotype (84% B-cell). HMH (odds ratio (OR) 2.18, 95% confidence interval (CI) 1.0-4.31, p = 0.025) and VHR initial risk group (OR 2.32; 95% CI 1.06-5.06, p = 0.035) were independently associated with baseline severe psychological distress. Only HMH was independently associated with 6-mos severe psychological distress (OR 4.93, 95% CI 1.80-13.48, p = 0.002). Future analyses will investigate race and ethnicity associations with parental distress pending trial accrual for statistical power. Conclusions: HMH, a modifiable poverty exposure, is significantly associated with severe parent psychological distress at diagnosis that persists 6-months into pediatric ALL therapy. These findings identify a cohort at high risk of inferior mental health outcomes, and affirm the need for HMH-targeted interventions to support children and parents during cancer treatment to reduce poverty-associated outcome disparities in survivorship.
    Type of Medium: Online Resource
    ISSN: 0732-183X , 1527-7755
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    Language: English
    Publisher: American Society of Clinical Oncology (ASCO)
    Publication Date: 2021
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  • 4
    Online Resource
    Online Resource
    American Society of Clinical Oncology (ASCO) ; 2022
    In:  Journal of Clinical Oncology Vol. 40, No. 16_suppl ( 2022-06-01), p. e24005-e24005
    In: Journal of Clinical Oncology, American Society of Clinical Oncology (ASCO), Vol. 40, No. 16_suppl ( 2022-06-01), p. e24005-e24005
    Abstract: e24005 Background: Cancer is the leading disease-related cause of death for children in the United States, but there is limited data on the needs of caregivers who have lost a child to cancer, and few evidence-based bereavement interventions exist. Parents whose children die from cancer have increased rates of depression, anxiety, and health problems. Prior studies have shown that bereaved parents desire continued contact with their child’s medical team and to connect with parents who have had similar losses. Methods: This is a cross sectional survey of primary caregivers of pediatric patients who died from cancer and were cared for at a moderate size pediatric oncology program (50 new diagnoses per year) from 2010 to 2020. Participation was solicited by mail in English and Spanish. Research packets contained five surveys: Demographic Survey, The Needs Assessment for Family Caregivers Bereaved to Cancer, Quality of Life Survey (SF-36), Brief Grief Assessment, and Social Support Questionnaire (SSQ-6). Interested subjects also participated in a semi-structured, in-depth qualitative interview. Results: One hundred six potentially eligible families were identified. 27 families consented, 10 were without a known address, and 2 opted out. Twenty research packets and 9 interviews were completed, representing 19% of the population of interest and 23% of the invited population. The sample was diverse in gender, age, income, and education level, but not race. The greatest unmet needs were finding meaning in the death, personal wellness, and social activities. Caregivers reported good physical functioning but poor emotional well-being and fatigue. Complicated grief was most profound in the interference (grief interfering with life) and intrusion (images and thoughts of the child) domains. Quantity of social support correlated with satisfaction with social support (P = 0.02). Bereaved parents with greater unmet needs were found to have poorer quality of life in the following domains: energy/fatigue (P = 0.005), role limitations due to emotional problems (P = 0.01), pain (P = 0.01), and emotional well-being (P = 0.02). Greater unmet needs did not correlate to more complicated grief (P = 0.30) or satisfaction with social support (P = 0.08). Interview themes elicited were inadequate current bereavement services, necessary support for siblings, desired contact with the medical team, and connections to other bereaved caregivers. Conclusions: Findings support the need for implementation of more intensive evidence-based bereavement programs for families of children who died from cancer. The data suggests that interventions targeting emotional well-being and increased social supports, in the form of connections to the medical team and other bereaved families, will be the most efficacious in mitigating poor bereavement-related outcomes.
    Type of Medium: Online Resource
    ISSN: 0732-183X , 1527-7755
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    Language: English
    Publisher: American Society of Clinical Oncology (ASCO)
    Publication Date: 2022
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  • 5
    Online Resource
    Online Resource
    American Society of Hematology ; 2008
    In:  Blood Vol. 112, No. 11 ( 2008-11-16), p. 1434-1434
    In: Blood, American Society of Hematology, Vol. 112, No. 11 ( 2008-11-16), p. 1434-1434
    Abstract: Background: Obesity is associated with major health problems in the pediatric population and is a fundamental risk factor for adult obesity with its concomitant morbidities. Sickle cell disease (SCD) has historically been associated with poor nutritional status rather than obesity. Children with SCD, however, have many general risk-factors and disease-specific characteristics, such as ethnic distribution and sedentary lifestyle, that may increase their risk for obesity. We hypothesized that the prevalence of obesity in children and adolescents with SCD would reflect that of the general pediatric population and that obesity would be associated with demographic and disease-specific variables. Methods: We conducted a retrospective chart review of all pediatric and young adult patients over the age of two in the Hasbro/RIH Sickle Cell clinics from 1980- 2008, collecting cross-sectional and longitudinal demographic and clinical variables. The primary outcome was the prevalence of overweight and obesity in this population. Secondary endpoints included the association of obesity with demographic and clinical variables and longitudinal growth trends. Body mass indices (BMI) were calculated for each subject, who were then categorized as underweight, healthy weight, overweight, or obese based on the International Obesity Task Force guidelines. Chi-square, Fischer exact tests, and T-tests were used to evaluate associations between overweight/obesity and the hypothesized risk factors and morbidities. Odds ratios were then calculated to determine the strength of these associations. This project was approved by the local Institutional Review Board. Results: The analysis included 149 subjects with a mean age of 13.2±6.5 years, 51% male, and a mean hemoglobin of 9.7±1.8. The mean BMI was 20.5±6.3 with a range from 13.1–49.1. Five percent of the subjects were underweight, 70% healthy weight, 12% overweight, and 13% obese. The most common morbidities included acute chest syndrome (44%), frequent ( & gt;3/yr) pain crises (34%), asthma (17%), and obstructive sleep apnea (17%). Overweight and obesity were not associated with gender, race, or insurance status in this population. The overweight/obese group was significantly older than the non-overweight group (15.3 years vs. 12.4 years, p=.02). Obesity was associated with sickle cell genotype: subjects with less severe genotypes were more likely to be obese than those with the most severe genotypes (p & lt;.01). Likewise, the mean hemoglobin was higher in the overweight/obese group than the non-obese group (10.3 vs. 9.5, p=.01). Obesity was also associated with a higher risk of certain SCD- and obesity-related morbidities including osteonecrosis (p=.01) and hypertension (p & lt;.01). The overweight/obese group spent more time hospitalized over the past year than the non-overweight group (9.5 days vs. 2.1 days, p & lt;.01). Overweight/obesity did not increase the likelihood of being on hydroxyurea treatment or requiring chronic transfusions, and did not increase the risk of acute chest syndrome, pain crises, asthma, obstructive sleep apnea, priapism, splenic sequestration, stroke, or abnormal transcranial doppler studies. Conclusions: In contrast to traditional thinking, this is the first study to demonstrate a high prevalence of overweight and obesity in pediatric SCD. Indeed, the prevalence of overweight and obesity in our children with SCD parallels that of these conditions in the general pediatric population. In those with SCD, obesity is more common in patients with less severe disease and is more widespread in older children. Additionally, obesity is associated with increased risk of SCD-related morbidities such as osteonecrosis and hypertension and is associated with more hospitalizations.
    Type of Medium: Online Resource
    ISSN: 0006-4971 , 1528-0020
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    Language: English
    Publisher: American Society of Hematology
    Publication Date: 2008
    detail.hit.zdb_id: 1468538-3
    detail.hit.zdb_id: 80069-7
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  • 6
    In: Journal of Clinical Oncology, American Society of Clinical Oncology (ASCO), Vol. 32, No. 15_suppl ( 2014-05-20), p. 10015-10015
    Type of Medium: Online Resource
    ISSN: 0732-183X , 1527-7755
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    Language: English
    Publisher: American Society of Clinical Oncology (ASCO)
    Publication Date: 2014
    detail.hit.zdb_id: 2005181-5
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  • 7
    In: Journal of Clinical Oncology, American Society of Clinical Oncology (ASCO), Vol. 37, No. 15_suppl ( 2019-05-20), p. 10006-10006
    Abstract: 10006 Background: DFCI ALL Consortium Protocol 11-001 assessed the efficacy and toxicity of Calaspargase pegol (SC-PEG), a novel pegylated asparaginase (ASP) formulation with longer half-life, compared with standard pegaspargase (SS-PEG). Methods: Patients (pts) aged 1-21 years with newly diagnosed acute lymphoblastic leukemia (ALL) or lymphoblastic lymphoma (LL) were eligible. At study entry, pts were randomly assigned to receive either intravenous SS-PEG or SC-PEG, 2500 IU/m2/dose. Pts received 1 dose during the first treatment month. Beginning week 7, SS-PEG was administered every 2 weeks for 15 doses, SC-PEG every 3 weeks for 10 doses (30 weeks). Serum asparaginase activity (SAA) (considered therapeutic at ≥ 0.1 IU/mL) was assessed 4, 11, 18, and 25 days after the induction dose and before each post-induction dose. End-induction minimal residual disease (MRD) was assessed in ALL pts by IGH/TCR PCR. Results: Between 2012-2015, 239 eligible pts enrolled (230 ALL, 9 LL); 120 assigned to SS-PEG, 119 to SC-PEG. After dose 1, SAA remained ≥ 0.1 IU/mL in ≥ 95% of pts on both arms through day 18. Median SAA was higher (0.319 IU/mL vs 0.056 IU/mL) and more pts had therapeutic SAA (88% vs 17%, p˂0.001) with SC-PEG vs SS-PEG 25 days after dose 1. Post-induction, median nadir SAA (NSAA) were similar ( 〉 1.0 IU/mL) for both arms. There was no difference in rates of ASP-allergy, pancreatitis, thrombosis, hyperbilirubinemia, osteonecrosis, or infection. Of 230 evaluable pts, 99% of SS-PEG and 95% of SC-PEG pts achieved complete remission (p = 0.12). For B ALL pts, there was no difference in frequency of high end-induction MRD (10.3% SS-PEG, 9.5% SC-PEG, p = 1.0). With 4-year median follow-up, 4-year event-free survival (EFS) (90% confidence interval) for SS-PEG was 90.2% (84.3, 93.9), 87.7% (81.5, 91.9) for SC-PEG (p = 0.78); overall survival (OS) was 95.6% (91.0, 97.9) for SS-PEG, 94.8% (90.0, 97.3) for SC-PEG (p = 0.74). Conclusions: Every 3-week SC-PEG had similar EFS, OS, safety profile, and NSAA compared with every 2-week SS-PEG. The high NSAA observed for both preparations suggest dosing strategies can be further optimized. These data informed FDA approval of SC-PEG for pediatric pts. Clinical trial information: NCT01574274.
    Type of Medium: Online Resource
    ISSN: 0732-183X , 1527-7755
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    Language: English
    Publisher: American Society of Clinical Oncology (ASCO)
    Publication Date: 2019
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