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1.
Pediatr Blood Cancer ; 71(6): e30960, 2024 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-38532279

RESUMEN

Treatment for childhood solid tumors may lead to an increased risk for gonadal dysfunction/infertility. Discussion of risk should occur at diagnosis, any changes in therapy, and during survivorship. Gonadotoxic therapies were abstracted from 32 Children's Oncology Group (COG) phase III, frontline solid tumor protocols, in use from 2000 to 2022. Risk for gonadal dysfunction/infertility was assessed based on gonadotoxic therapies, sex, and pubertal status and assigned as minimal, significant, and high following the Oncofertility Consortium Pediatric Initiative Network (PIN) risk stratification. Most protocols (65.6%, 21/32) contained at least one therapeutic arm with a high level of increased risk. Solid tumor therapies present challenges in risk stratification due to response-adjusted therapy and the need to account for radiation field in the risk assessment. This guide hopes to serve as a tool to assist in standardizing gonadotoxic risk assessments across disciplines and improve referral for fertility services and reproductive health counseling for patients receiving COG-based solid tumor therapy. Internationally, many solid tumor therapies follow similar paradigms to COG studies, and risk stratifications may be generalizable to similar styles of therapy. In addition, this model may be applied to other international groups with the goal of standardizing fertility assessments.


Asunto(s)
Preservación de la Fertilidad , Neoplasias , Humanos , Preservación de la Fertilidad/métodos , Neoplasias/terapia , Niño , Femenino , Masculino , Adolescente
2.
Pediatr Blood Cancer ; 71(8): e31080, 2024 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-38778453

RESUMEN

BACKGROUND: Approximately 1 in 10 adult survivors of childhood cancer is underweight. Although the consequences of being overweight or obese have been well described, outcomes among childhood cancer survivors who are underweight are unknown. OBJECTIVE: To determine whether underweight status increases the risk of mortality. PROCEDURE: Cohort study: Marginal models with generalized estimating equations to evaluate the associations between body mass index (BMI), serious or life-threatening chronic conditions, and death in the setting of long-term follow-up questionnaires and National Death Index search. PARTICIPANTS: Childhood cancer five-year survivors diagnosed during 1970-1986 in the Childhood Cancer Survivor Study Exposure: Underweight status, defined as body mass index (BMI) < 18.5 kg/m2 compared with ideal body weight. Based on available literature on body weight and mortality from the general population, ideal body weight was defined as BMI 22.0-24.9 kg/m2. MAIN OUTCOMES: Overall mortality and cancer-specific mortality. RESULTS: Of 9454 survivors (median age 35 years old (range, 17-58), an average of 17.5 years from diagnosis), 627 (6.6%) participants were underweight at baseline or follow-up questionnaire. Of 184 deaths, 29 were among underweight survivors. Underweight status was more common among females (9.1% vs. 4.5%, p < .01) and participants with younger age at diagnosis (8.2% for < 5 years vs. 6.1% for ≥5 years, p < .01), lower household income (8.9% for < $20,000 vs. 6.0% for ≥ $20,000, p < .01), or a history of serious chronic condition (p = .05). After adjustment for these factors, in addition to prior smoking and a history of radiation therapy, the risk of all-cause mortality within two years of BMI report was increased (OR 2.85; 95% CI: 1.63-4.97; p < .01) for underweight survivors, compared with ideal-weight survivors. CONCLUSIONS: Childhood cancer survivors who are underweight are at increased risk for late mortality that appears unrelated to smoking status, recognized chronic disease, or subsequent malignancy. Whether targeted nutritional interventions would ameliorate this risk is unknown.


Asunto(s)
Índice de Masa Corporal , Supervivientes de Cáncer , Neoplasias , Delgadez , Humanos , Delgadez/mortalidad , Femenino , Masculino , Supervivientes de Cáncer/estadística & datos numéricos , Adolescente , Adulto , Neoplasias/mortalidad , Neoplasias/complicaciones , Adulto Joven , Persona de Mediana Edad , Estudios de Seguimiento , Niño , Preescolar , Factores de Riesgo , Tasa de Supervivencia , Pronóstico
3.
Echocardiography ; 41(2): e15766, 2024 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-38340258

RESUMEN

BACKGROUND: A previous multicenter study showed that longitudinal changes in standard cardiac functional parameters were associated with the development of cardiomyopathy in childhood cancer survivors (CCS). Evaluation of the relationship between global longitudinal strain (GLS) changes and cardiomyopathy risk was limited, largely due to lack of quality apical 2- and 3-chamber views in addition to 4-chamber view. We sought to determine whether apical 4-chamber longitudinal strain (A4LS) alone can serve as a suitable surrogate for GLS in this population. METHODS: A4LS and GLS were measured in echocardiograms with acceptable apical 2-, 3-, and 4-chamber views. Correlation was evaluated using Pearson and Spearman coefficients, and agreement was evaluated with Bland-Altman plots. The ability of A4LS to identify normal and abnormal values compared to GLS as the reference was evaluated. RESULTS: Among a total of 632 reviewed echocardiograms, we identified 130 echocardiograms from 56 patients with adequate views (38% female; mean age at cancer diagnosis 8.3 years; mean follow-up 9.4 years). Correlation coefficients between A4LS and GLS were .89 (Pearson) and .85 (Spearman), with Bland-Altman plot of GLS-A4LS showing a mean difference of -.71 ± 1.8. Compared with GLS as the gold standard, A4LS had a sensitivity of 86% (95% CI 79%-93%) and specificity of 82% (69%-95%) when using normal range cutoffs and 90% (82%-97%) and 70% (58%-81%) when using ±2 standard deviations. CONCLUSION: A4LS performs well when compared with GLS in this population. Given the more recent adoption of apical 2- and 3-chamber views in most pediatric echocardiography laboratories, A4LS is a reasonable stand-alone measurement in retrospective analyses of older study cohorts and echocardiogram biorepositories.


Asunto(s)
Supervivientes de Cáncer , Cardiomiopatías , Neoplasias , Disfunción Ventricular Izquierda , Niño , Femenino , Humanos , Masculino , Ecocardiografía , Neoplasias/complicaciones , Estudios Retrospectivos , Volumen Sistólico , Función Ventricular Izquierda , Adolescente
4.
Pediatr Blood Cancer ; 70(7): e30276, 2023 07.
Artículo en Inglés | MEDLINE | ID: mdl-37051746

RESUMEN

BACKGROUND: Allogeneic hematopoietic stem cell transplantation (HCT) performed in children from human leukocyte antigen (HLA)-identical related donors is associated with very high survival rates and disease-free survival. Patients are exposed to gonadotoxic alkylating agents or irradiation in the HCT conditioning regimen. Consequently, infertility is a major long-term complication of HCT for sickle cell disease (SCD). We sought to understand how caregivers perceive the risk of infertility from HCT, how they perceive the options for fertility preservation, and how this risk perception impacted their decision-making to pursue HCT. PROCEDURES: We conducted qualitative interviews with primary caregivers after a consultation for HCT for SCD. Data were analyzed using descriptive qualitative analysis. RESULTS: We interviewed 19 primary caregivers who had attended a consultation with an HCT physician (female, age 25-59 [median 39] years). Eleven participants reported that their child had an available HLA-matched donor. Analysis revealed that (i) mothers were worried about death and graft-versus-host disease from HCT, more than about the risk of infertility; (ii) parents have a realistic understanding of the risk of infertility after HCT and take it into consideration in decision-making; (iii) parents report multiple barriers to fertility preservation. CONCLUSION: For parents actively considering HCT for their child with SCD, the risk of infertility while important was not a barrier to pursuing HCT. Inconvenience and invasiveness of fertility preservation procedures are some of the barriers to pursuing fertility preservation for their child. Future research must aim at addressing these barriers to fertility preservation.


Asunto(s)
Anemia de Células Falciformes , Preservación de la Fertilidad , Enfermedad Injerto contra Huésped , Trasplante de Células Madre Hematopoyéticas , Infertilidad , Humanos , Niño , Femenino , Adolescente , Adulto , Persona de Mediana Edad , Preservación de la Fertilidad/métodos , Trasplante de Células Madre Hematopoyéticas/métodos , Padres , Acondicionamiento Pretrasplante/métodos
5.
Pediatr Blood Cancer ; 70(8): e30448, 2023 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-37243931

RESUMEN

The extent to which heavy metal chemotherapy results in treatment-related ovarian damage is controversial. Anti-Mullerian hormone (AMH) levels measured more than 1 year after cancer therapy completion were abstracted from the medical records of 39 female survivors of childhood cancer aged 11 years and older, whose only gonadotoxic exposure was heavy metal chemotherapy. One-fifth of survivors who received cisplatin had AMH levels indicative of diminished ovarian reserve at last measurement. There was an observed clustering of low AMH in patients diagnosed in the peripubertal age range (i.e., 10-12 years). These findings may support a small, but present, risk of gonadal damage after heavy metal chemotherapy.


Asunto(s)
Supervivientes de Cáncer , Metales Pesados , Neoplasias , Reserva Ovárica , Femenino , Humanos , Adolescente , Niño , Ovario , Sobrevivientes , Hormona Antimülleriana , Neoplasias/tratamiento farmacológico
6.
Pediatr Blood Cancer ; 70 Suppl 5: e28476, 2023 09.
Artículo en Inglés | MEDLINE | ID: mdl-32633029

RESUMEN

Despite being considered "standard of care" by many organizations, fertility and reproductive health communications and counseling practices remain inconsistent for adolescents and young adults (AYAs) newly diagnosed with cancer and during survivorship. One factor known to affect how information is provided and received in the medical setting is health literacy. Providers should consider health literacy to optimize reproductive health communication with AYAs as they cope with their diagnosis, understand what it means for their future, process information about treatment options, learn about their potential harmful effects on fertility, make quick decisions about fertility preservation, and navigate a future family planning course. Thus, the objectives of this manuscript are to (a) summarize literature on reproductive health literacy; (b) describe health literacy frameworks; (c) examine ways to assess health literacy; and (d) identify ways to enhance clinician-patient communication in the AYA oncofertility setting.


Asunto(s)
Preservación de la Fertilidad , Comunicación en Salud , Alfabetización en Salud , Neoplasias , Humanos , Adolescente , Adulto Joven , Salud Reproductiva , Toma de Decisiones , Neoplasias/terapia , Neoplasias/psicología , Preservación de la Fertilidad/psicología
7.
Pediatr Blood Cancer ; 70(8): e30480, 2023 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-37269530

RESUMEN

BACKGROUND: Childhood cancer survivors need regular, long-term survivor care. The Children's Oncology Group (COG) recommends that pediatric patients receive ongoing, evidence-based surveillance for late effects, beginning 2 years after the completion of cancer therapy. However, at least a third of survivors are not engaging in long-term survivorship care. This study assessed facilitators and barriers to follow-up survivorship care through the perspectives of pediatric cancer survivor clinic representatives. METHODS: As part of a hybrid implementation-effectiveness trial, a representative from 12 participating pediatric cancer survivor clinics completed a survey about site characteristics and a semi-structured interview on facilitators and barriers to survivor care delivery at their institution. Interviews were grounded in the socio-ecological model (SEM) framework and utilized a fishbone diagram to understand what facilitates and impedes survivor care. We ran descriptive statistics and conducted thematic analyses of the interview transcripts to create two meta-fishbone diagrams. RESULTS: All participating clinics (N = 12) have existed for at least 5 years (mean = 15, median = 13, range = 3-31), and half (n = 6, 50%) reported seeing more than 300 survivors annually. In the fishbone diagram, the top facilitators were in the SEM domain of organization, specifically with familiar staff (n = 12, 100%), resource utilization (n = 11, 92%), dedicated survivorship staff (n = 10, 83%), and clinic processes (n = 10, 83%). Common barriers were across the domains of organization, community, and policy, which included distance/transportation to the clinic (n = 12, 100%), technology limits (n = 11, 92%), scheduling issues (n = 11, 92%), and insufficient funding/insurance (n = 11, 92%). CONCLUSION: Clinic staff and provider perceptions are instrumental in understanding multilevel contextual issues related to survivor care delivery for pediatric cancer survivor clinics. Future research can aid in developing education, processes, and services to promote cancer survivor follow-up care.


Asunto(s)
Supervivientes de Cáncer , Neoplasias , Humanos , Niño , Supervivencia , Sobrevivientes , Atención a la Salud , Neoplasias/terapia
8.
Pediatr Blood Cancer ; 70 Suppl 5: e28854, 2023 09.
Artículo en Inglés | MEDLINE | ID: mdl-37381152

RESUMEN

In the survivorship setting, adolescent and young adult (AYA) cancer survivors frequently demonstrate little knowledge of infertility risk, are unclear regarding their fertility status, and may under- or overestimate their treatment-related risk for infertility. In female AYA survivors, ovarian function usually parallels fertility, and can be assessed with serum hormone levels and ultrasonography. Posttreatment fertility preservation may be appropriate for survivors at risk for primary ovarian insufficiency. In male AYA survivors, fertility and gonadal function are not always equally affected, and can be assessed with a semen analysis and serum hormones, respectively. As reproductive health issues are commonly cited as an important concern by survivors of AYA cancer, multidisciplinary care teams including oncology, endocrinology, psychology, and reproductive medicine are advocated, with the aim of optimal provision of fertility advice and care for AYA cancer survivors.


Asunto(s)
Supervivientes de Cáncer , Preservación de la Fertilidad , Infertilidad , Neoplasias , Humanos , Masculino , Femenino , Adulto Joven , Adolescente , Supervivientes de Cáncer/psicología , Fertilidad , Sobrevivientes/psicología , Preservación de la Fertilidad/psicología , Neoplasias/complicaciones , Neoplasias/terapia , Neoplasias/psicología
9.
Lancet Oncol ; 22(2): e45-e56, 2021 02.
Artículo en Inglés | MEDLINE | ID: mdl-33539753

RESUMEN

Female patients with childhood, adolescent, and young adult cancer are at increased risk for fertility impairment when treatment adversely affects the function of reproductive organs. Patients and their families desire biological children but substantial variations in clinical practice guidelines reduce consistent and timely implementation of effective interventions for fertility preservation across institutions. As part of the PanCareLIFE Consortium, and in collaboration with the International Late Effects of Childhood Cancer Guideline Harmonization Group, we reviewed the current literature and developed a clinical practice guideline for fertility preservation in female patients who were diagnosed with childhood, adolescent, and young adult cancer at age 25 years or younger, including guidance on risk assessment and available methods for fertility preservation. The Grading of Recommendations Assessment, Development and Evaluation methodology was used to grade the available evidence and to form the recommendations. This clinical practice guideline leverages existing evidence and international expertise to develop transparent recommendations that are easy to use to facilitate the care of female patients with childhood, adolescent, and young adult cancer who are at high risk for fertility impairment. A complete review of the existing evidence, including a quality assessment, transparent reporting of the guideline panel's decisions, and achievement of global interdisciplinary consensus, is an important result of this intensive collaboration.


Asunto(s)
Supervivientes de Cáncer , Preservación de la Fertilidad/tendencias , Neoplasias/epidemiología , Neoplasias/terapia , Adolescente , Adulto , Niño , Femenino , Guías como Asunto , Humanos , Neoplasias/complicaciones , Neoplasias/patología , Medición de Riesgo , Adulto Joven
10.
Am J Obstet Gynecol ; 224(1): 3-15, 2021 01.
Artículo en Inglés | MEDLINE | ID: mdl-32502557

RESUMEN

Female childhood, adolescent, and young adult cancer survivors have an increased risk of adverse pregnancy outcomes related to their cancer- or treatment-associated sequelae. Optimal care for childhood, adolescent, and young adult cancer survivors can be facilitated by clinical practice guidelines that identify specific adverse pregnancy outcomes and the clinical characteristics of at-risk subgroups. However, national guidelines are scarce and vary in content. Here, the International Late Effects of Childhood Cancer Guideline Harmonization Group offers recommendations for the counseling and surveillance of obstetrical risks of childhood, adolescent, and young adult survivors. A systematic literature search in MEDLINE database (through PubMed) to identify all available evidence published between January 1990 and December 2018. Published articles on pregnancy and perinatal or congenital risks in female cancer survivors were screened for eligibility. Study designs with a sample size larger than 40 pregnancies in childhood, adolescent, and young adult cancer survivors (diagnosed before the age of 25 years, not pregnant at that time) were eligible. This guideline from the International Late Effects of Childhood Cancer Guideline Harmonization Group systematically appraised the quality of available evidence for adverse obstetrical outcomes in childhood, adolescent, and young adult cancer survivors using Grading of Recommendations Assessment, Development, and Evaluation methodology and formulated recommendations to enhance evidence-based obstetrical care and preconception counseling of female childhood, adolescent, and young adult cancer survivors. Healthcare providers should discuss the risk of adverse obstetrical outcomes based on cancer treatment exposures with all female childhood, adolescent, and young adult cancer survivors of reproductive age, before conception. Healthcare providers should be aware that there is no evidence to support an increased risk of giving birth to a child with congenital anomalies (high-quality evidence). Survivors treated with radiotherapy to volumes exposing the uterus and their healthcare providers should be aware of the risk of adverse obstetrical outcomes such as miscarriage (moderate-quality evidence), premature birth (high-quality evidence), and low birthweight (high-quality evidence); therefore, high-risk obstetrical surveillance is recommended. Cardiomyopathy surveillance is reasonable before pregnancy or in the first trimester for all female survivors treated with anthracyclines and chest radiation. Female cancer survivors have increased risks of premature delivery and low birthweight associated with radiotherapy targeting the lower body and thereby exposing the uterus, which warrant high-risk pregnancy surveillance.


Asunto(s)
Supervivientes de Cáncer , Consejo , Guías de Práctica Clínica como Asunto , Atención Preconceptiva/normas , Complicaciones del Embarazo/psicología , Adolescente , Niño , Femenino , Humanos , Embarazo , Complicaciones del Embarazo/prevención & control , Adulto Joven
11.
Echocardiography ; 38(2): 296-303, 2021 02.
Artículo en Inglés | MEDLINE | ID: mdl-33486820

RESUMEN

BACKGROUND: Retrospective multicenter research using echocardiograms obtained for routine clinical care can be hampered by issues of individual center quality. We sought to evaluate imaging and patient characteristics associated with poorer quality of archived echocardiograms from a cohort of childhood cancer survivors. METHODS: A single blinded reviewer at a central core laboratory graded quality of clinical echocardiograms from five centers focusing on images to derive 2D and M-mode fractional shortening (FS), biplane Simpson's ejection fraction (EF), myocardial performance index (MPI), tissue Doppler imaging (TDI)-derived velocities, and global longitudinal strain (GLS). RESULTS: Of 535 studies analyzed in 102 subjects from 2004 to 2017, all measures of cardiac function could be assessed in only 7%. While FS by 2D or M-mode, MPI, and septal E/E' could be measured in >80% studies, mitral E/E' was less consistent (69%), but better than EF (52%) and GLS (10%). 66% of studies had ≥1 issue, with technical issues (eg, lung artifact, poor endocardial definition) being the most common (33%). Lack of 2- and 3-chamber views was associated with the performing center. Patient age <5 years had a higher chance of apex cutoff in 4-chamber views compared with 16-35 years old. Overall, for any quality issue, earlier era of echo and center were the only significant risk factors. CONCLUSION: Assessment of cardiac function using pooled multicenter archived echocardiograms was significantly limited. Efforts to standardize clinical echocardiographic protocols to include apical 2- and 3-chamber views and TDI will improve the ability to quantitate LV function.


Asunto(s)
Disfunción Ventricular Izquierda , Función Ventricular Izquierda , Adolescente , Adulto , Preescolar , Estudios de Cohortes , Ecocardiografía , Humanos , Estudios Retrospectivos , Volumen Sistólico , Disfunción Ventricular Izquierda/diagnóstico por imagen , Adulto Joven
12.
J Pediatr Hematol Oncol ; 42(7): e575-e582, 2020 10.
Artículo en Inglés | MEDLINE | ID: mdl-32205784

RESUMEN

OBJECTIVES: This study describes the hormone profiles for gonadal late effects after alkylator-based hematopoietic stem cell transplant (HSCT) regimens used for sickle-cell disease (SCD). METHODS: This is a retrospective chart review of subjects followed in the post-HSCT clinic for sickle-cell disease. Patient demographics, pubertal development, characteristics of pre-HSCT disease severity, treatment before HSCT, conditioning regimens, presence of graft versus host disease and follicle-stimulating hormone, anti-Müllerian hormone (AMH), luteinizing hormone and testosterone were abstracted from the medical record. RESULTS: Forty subjects (24 female individuals) with SCD were 9 (±4.3) years old at HSCT and 7.9 years (±5.6) from HSCT. At the time of transplant, 8% of female individuals and no male individuals were pubertal and 58% of female individuals and 38% of male individuals had been treated with hydroxyurea. Post-HSCT, all of the female individuals had diminished ovarian reserve on the basis of low AMH values and 10 of the pubertal female individuals (71%) had premature ovarian insufficiency defined as follicle-stimulating hormone >40 mIU/mL ×2. There was no ovarian recovery and AMH remained very low or undetectable up to 13 years post-HSCT. In male individuals, luteinizing hormone and testosterone levels were normal for age. CONCLUSIONS: Post-HSCT for SCD, all female individuals had diminished ovarian reserve and most female individuals had POI, whereas male individuals had normal testosterone hormone production.


Asunto(s)
Anemia de Células Falciformes/terapia , Trasplante de Células Madre Hematopoyéticas/métodos , Hipogonadismo/epidemiología , Hipogonadismo/etiología , Acondicionamiento Pretrasplante/efectos adversos , Alquilantes/efectos adversos , Hormona Antimülleriana/sangre , Niño , Femenino , Humanos , Estudios Longitudinales , Hormona Luteinizante/sangre , Masculino , Reserva Ovárica/efectos de los fármacos , Insuficiencia Ovárica Primaria/inducido químicamente , Estudios Retrospectivos , Testosterona/sangre , Acondicionamiento Pretrasplante/métodos
13.
Support Care Cancer ; 28(8): 3905-3914, 2020 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-31853699

RESUMEN

PURPOSE: The objective of this article is to demonstrate how user-centered design theory and methods can be employed to develop and iteratively improve technologies to support survivors of childhood cancer. METHODS: Focus groups and structured interviews with young adult survivors of pediatric cancer (N = 3), parents (N = 11), and healthcare providers (N = 14) were conducted to understand their needs as potential users and the contexts in which they would use an electronic personal health record (PHR) for survivors, Cancer SurvivorLinkTM (https://cancersurvivorlink.org/). Usability evaluations were conducted to assess the functionality of the PHR using think aloud protocol with survivors/parents (N = 4) and focus groups with providers (N = 12). RESULTS: Major themes identified through the needs assessment guided design of the PHR, including (1) education about the lifelong healthcare needs of pediatric cancer survivors ("Learn"), (2) secure electronic storage for healthcare documents to direct long-term follow-up care ("Store"), and (3) communication functionality to allow sharing of health documents with healthcare providers ("Share"). Usability evaluations identified challenges with the PHR design, which informed site enhancements to improve PHR usefulness and ease of use including a registration wizard and healthcare provider directory. CONCLUSIONS: User-centered design methods informed iterative enhancements to an untethered, patient-controlled PHR to address usability barriers and meet the self-identified needs of survivors of childhood cancer and their providers.


Asunto(s)
Supervivientes de Cáncer , Registros Electrónicos de Salud , Registros de Salud Personal , Niño , Grupos Focales , Personal de Salud , Humanos , Difusión de la Información , Internet , Evaluación de Necesidades , Neoplasias , Atención Dirigida al Paciente , Diseño de Software , Interfaz Usuario-Computador , Adulto Joven
14.
Pediatr Blood Cancer ; 66(12): e27981, 2019 12.
Artículo en Inglés | MEDLINE | ID: mdl-31502374

RESUMEN

BACKGROUND: Providers often rely on self-reported ovarian function in adolescent and young adult (AYA)-aged childhood cancer survivors when making clinical decisions. This study described reported menstrual patterns and the agreement between respondent-reported and biochemical premature ovarian insufficiency (POI) in this population. PROCEDURE: This was a cross-sectional study of survivors (or their parent proxy) aged 13-21.9 years who received gonadotoxic therapy and were enrolled in a longitudinal health survey. Participants reported menstrual regularity, hormone-replacement therapy (HRT) use, and ovarian dysfunction. Respondent-reported POI was defined as the survivor taking HRT for ovarian failure or having been told she had ovarian failure. Biochemical POI was defined as follicle-stimulating hormone (FSH) level ≥40 mIU/mL. The agreement between respondent-reported and biochemical POI was determined using Cohen's kappa coefficient (κ) and analyzed by demographic and clinical factors. RESULTS: Among 182 AYA-aged survivors (72.5% non-Hispanic White, 46.7% leukemia survivors), 14.8% reported requiring HRT to have menses but 55.5% reported regular menses without HRT use. Among survivors with FSH measurements (n = 130), 17.7% reported POI whereas 18.5% had FSH ≥40 mIU/mL (κ = 0.66, sensitivity 70.8%, specificity 94.3%). The highest agreement between respondent-reported and biochemical POI was with young adult self-report (κ = 0.78) and survivors with >5 survivor clinic (κ = 0.83) and/or >5 endocrinologist (κ = 1.00) visits. CONCLUSIONS: The majority of AYA-aged survivors reported having regular menses without HRT support. The accuracy of respondent-reported POI increased with repeated survivor clinic or endocrinologist visits, highlighting the importance of continued education. Survivors must be informed about their ovarian function to enable them to advocate for their reproductive health.


Asunto(s)
Supervivientes de Cáncer/estadística & datos numéricos , Neoplasias/terapia , Padres , Medición de Resultados Informados por el Paciente , Insuficiencia Ovárica Primaria/diagnóstico , Adolescente , Adulto , Terapia Combinada , Estudios Transversales , Femenino , Estudios de Seguimiento , Georgia/epidemiología , Humanos , Incidencia , Neoplasias/patología , Insuficiencia Ovárica Primaria/epidemiología , Pronóstico , Apoderado , Salud Reproductiva , Adulto Joven
15.
J Pediatr Psychol ; 44(5): 557-566, 2019 06 01.
Artículo en Inglés | MEDLINE | ID: mdl-30624691

RESUMEN

OBJECTIVE: This study aimed to examine the level and predictors of knowledge of late effects risks from childhood cancer treatment in adolescent and young adult (AYA) survivors. METHODS: Seventy-three AYAs, aged 14-21, completed measures of knowledge of late effect risks, executive functioning, and responsibility for health self-management. Sixty-seven parents of these AYA survivors (91.7%) also participated. RESULTS: Survivors demonstrated poor knowledge of their unique risks for treatment-related late effects, with a mean accurate knowledge score of 54.29% (SD = 24.19%). The number of late effects for which survivors were at risk was negatively correlated with risk knowledge (r = -.34, p < .01). Survivors' executive functioning was not related to risk knowledge. In regression analyses, survivor age positively predicted accurate knowledge of late effects risks, and the number of late effects risk was a negative predictor. In separate models, survivor self-report of AYA responsibility for health self-management did not predict knowledge (R2 = .39, F = 10.86, p < .01), but parent proxy-report was a significant positive predictor (R2 = .38, F = 9.62, p < .01). Parental involvement was not a significant predictor in either model. CONCLUSION: There are significant knowledge gaps among AYA survivors of childhood cancer, which appear to be related to younger AYA age and lower levels of AYA responsibility for health self-management. Additional intervention is critical to increase AYA knowledge of their risk for late effects in order to promote continued engagement in long-term follow-up care and surveillance across the lifespan.


Asunto(s)
Supervivientes de Cáncer/psicología , Conocimientos, Actitudes y Práctica en Salud , Automanejo/psicología , Adolescente , Adulto , Factores de Edad , Supervivientes de Cáncer/estadística & datos numéricos , Femenino , Humanos , Masculino , Riesgo , Autoinforme , Automanejo/métodos , Automanejo/estadística & datos numéricos , Adulto Joven
16.
Cardiol Young ; 29(6): 808-812, 2019 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-31280730

RESUMEN

BACKGROUND: Cardiovascular disease is a leading cause of morbidity and mortality in childhood cancer survivors. Cardiologists must be aware of risk factors and long-term follow-up guidelines, which have historically been the purview of oncologists. Little is known about paediatric cardiologists' knowledge regarding the cardiotoxicity of cancer treatment and how to improve this knowledge. METHODS: A total of 58 paediatric cardiologists anonymously completed a 21-question, web-based survey focused on four cardio-oncology themes: cancer treatment-related risk factors (n = 6), patient-related risk factors (n = 6), recommended surveillance (n = 3), and cardiac-specific considerations (n = 6). Following the baseline survey, a multi-disciplinary team of paediatric cardiologists and cancer survivor providers developed an in-person and web-based educational intervention. A post-intervention survey was conducted 5 months later. RESULTS: The response rate was 41/58 (70.7%) pre-intervention and 30/58 (51.7%) post-intervention. On the baseline survey, the percentage of correct answers was 68.8 ± 10.3%, which improved to 79.2 ± 16.2% after the intervention (p = 0.009). The theme with the most profound knowledge deficit was surveillance; however, it also had the greatest improvement after the intervention (49.6 ± 26.7 versus 66.7 ± 27.7% correct, p = 0.025). Individual questions with the largest per cent improvement pertained to risk of cardiac dysfunction with time since treatment (52.4 versus 93.1%, p = 0.002) and the role of dexrazoxane (48.8 versus 82.8%, p = 0.020). CONCLUSION: Specific knowledge deficits about the care of paediatric cancer survivors were identified amongst cardiologists using a web-based survey. Knowledge of surveillance was initially lowest but improved the most after an educational intervention. This highlights the need for cardio-oncology-based educational initiatives among paediatric cardiologists.


Asunto(s)
Antineoplásicos/efectos adversos , Actitud del Personal de Salud , Supervivientes de Cáncer , Cardiólogos/normas , Enfermedades Cardiovasculares/psicología , Conocimientos, Actitudes y Práctica en Salud , Neoplasias/tratamiento farmacológico , Antineoplásicos/uso terapéutico , Cardiólogos/educación , Enfermedades Cardiovasculares/inducido químicamente , Enfermedades Cardiovasculares/epidemiología , Niño , Estudios de Seguimiento , Humanos , Incidencia , Neoplasias/epidemiología , Estudios Retrospectivos , Factores de Riesgo , Tasa de Supervivencia/tendencias , Factores de Tiempo , Estados Unidos/epidemiología
17.
Cancer ; 124(11): 2447-2455, 2018 06 01.
Artículo en Inglés | MEDLINE | ID: mdl-29663341

RESUMEN

BACKGROUND: The objective of the current study was to characterize and identify factors associated with perceptions of risk of infertility among adult male survivors of childhood cancer. METHODS: A total of 1233 adult male survivors from the Childhood Cancer Survivor Study who were without a history of disease recurrence or subsequent malignancy reported their perceptions of their risk of infertility compared with men never diagnosed with cancer. Survivors were a median age of 37.8 years (range, 22.0-58.7 years) and were 28.4 years from their diagnosis (range, 21.4-39.2 years). Multivariable logistic regression evaluated factors associated with perceptions of risk. RESULTS: Overall, 35.9% of the survivors (443 of 1233 survivors) reported perceptions of their risk of infertility that were discordant with their actual risk based on previous cancer treatment exposures. Discordant perceptions were equally common among men exposed to gonadotoxic therapies (36.3%; 311 of 857 men) and those with no history of gonadotoxic exposure (35.1%; 132 of 376 men). Survivors who fathered children (odds ratio [OR], 4.14; 95% confidence interval [95% CI], 2.74-6.24), had no survivor-focused health care (OR, 3.07; 95% CI, 1.57-5.99), were nonwhite (OR, 2.28; 95% CI, 1.10-4.75), and were of lower income were more likely to report no increased risk of infertility after gonadotoxic treatment. Perceptions of increased risk of infertility among men with no history of gonadotoxic treatment were predicted by never having fathered a child (OR, 1.88; 95% CI, 1.17-3.03), recent participation in survivor-focused health care (OR, 2.11; 95% CI, 1.01-4.42), and higher educational achievement. CONCLUSIONS: Many male survivors of childhood cancer are unaware of how their cancer treatments could impact their reproductive health, underscoring the need for all patients to receive education regarding their risk of infertility throughout the continuum of cancer care. Cancer 2018;124:2447-55. © 2018 American Cancer Society.


Asunto(s)
Adultos Sobrevivientes de Eventos Adversos Infantiles/psicología , Supervivientes de Cáncer/psicología , Conocimientos, Actitudes y Práctica en Salud , Infertilidad/psicología , Neoplasias/terapia , Adolescente , Adulto , Supervivientes de Cáncer/estadística & datos numéricos , Niño , Preescolar , Estudios de Cohortes , Humanos , Infertilidad/etiología , Masculino , Persona de Mediana Edad , Neoplasias/complicaciones , Neoplasias/mortalidad , Educación del Paciente como Asunto , Percepción , Factores de Riesgo , Encuestas y Cuestionarios/estadística & datos numéricos , Testículo/efectos de los fármacos , Testículo/efectos de la radiación , Adulto Joven
18.
Pediatr Blood Cancer ; 65(2)2018 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-28960781

RESUMEN

PURPOSE: To report the thyroid dosimetry and long-term follow-up of childhood cancer survivors treated with whole lung irradiation (WLI) for Wilms tumor. METHODS: Twenty-eight patients with pulmonary metastases from Wilms tumor who underwent WLI from 2000 TO 2012 at a single institution were reviewed. Radiation dose to the thyroid gland in each case was calculated. Postradiation thyroid function test (TFT) results and management of thyroid function abnormalities were extracted from the medical records. RESULTS: Median age at treatment was 5 years (range: 1-9 years), and median follow-up time was 74.1 months (7.2-198.4). The male/female ratio was 1:1.8. Complete dosimetry data were available for 22 of the 28 patients receiving WLI. Mean thyroid volume was 3.3 cc (range: 1-6.8). The average mean and median mean dose to the thyroid was 6.7 and 7.1 Gy, respectively (range: 1.3-11.7 Gy). Average max dose to the thyroid was 12.4 Gy (range: 7.8-20.3 Gy). Two patients were found to have a thyroid stimulating hormone (TSH) above the normal range, managed with levothyroxine. Another patient was found to have an isolated elevation of TSH which normalized without treatment. A fourth patient was found to have an enlarged thyroid on examination with no palpable nodules or abnormal TFTs. CONCLUSIONS: Average mean dose to the thyroid gland was 6.7 Gy for this population of stage IV Wilms tumor patients. There was a low rate of thyroid dysfunction, but limited follow-up. Attention to blocking the thyroid gland as much as possible when designing radiation fields can potentially mitigate the risks of long-term thyroid effects.


Asunto(s)
Neoplasias Renales , Neoplasias Pulmonares , Pulmón/patología , Glándula Tiroides/patología , Tumor de Wilms , Niño , Preescolar , Femenino , Estudios de Seguimiento , Humanos , Lactante , Neoplasias Renales/patología , Neoplasias Renales/radioterapia , Neoplasias Pulmonares/patología , Neoplasias Pulmonares/radioterapia , Neoplasias Pulmonares/secundario , Masculino , Metástasis de la Neoplasia , Estadificación de Neoplasias , Dosificación Radioterapéutica , Tumor de Wilms/patología , Tumor de Wilms/radioterapia
19.
Pediatr Blood Cancer ; 65(12): e27345, 2018 12.
Artículo en Inglés | MEDLINE | ID: mdl-30051591

RESUMEN

Using a survey, we assessed four health habits in 468 pediatric cancer survivors. Approximately 75% were at goal for ≥1 behavior-44% were active ≥1 hr per day, 40% engaged in ≤1 hr of screen time a day, 34% consumed sweetened beverages not often, and 4% ate >4 servings of fruits and vegetables per day. Survivors' age was associated with being active (P < 0.001) and limited screen time (P = 0.001). Males were more likely to be active (P = 0.003). The most common combination of goal behaviors was activity and screen time. Encouraging healthy behaviors may decrease the burden of late effects in survivors.


Asunto(s)
Supervivientes de Cáncer , Conducta Alimentaria , Conductas Relacionadas con la Salud , Caracteres Sexuales , Adolescente , Niño , Preescolar , Femenino , Humanos , Masculino
20.
Future Oncol ; 14(29): 3059-3072, 2018 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-30474429

RESUMEN

Once unimaginable, fertility management is now a nationally established part of cancer care in institutions, from academic centers to community hospitals to private practices. Over the last two decades, advances in medicine and reproductive science have made it possible for men, women and children to be connected with an oncofertility specialist or offered fertility preservation soon after a cancer diagnosis. The Oncofertility Consortium's National Physicians Cooperative is a large-scale effort to engage physicians across disciplines - oncology, urology, obstetrics and gynecology, reproductive endocrinology, and behavioral health - in clinical and research activities to enable significant progress in providing fertility preservation options to children and adults. Here, we review the structure and function of the National Physicians Cooperative and identify next steps.


Asunto(s)
Preservación de la Fertilidad/métodos , Fertilidad/fisiología , Colaboración Intersectorial , Neoplasias/fisiopatología , Médicos/organización & administración , Adulto , Antineoplásicos/efectos adversos , Medicina de la Conducta/organización & administración , Niño , Progresión de la Enfermedad , Endocrinología/métodos , Endocrinología/organización & administración , Femenino , Fertilidad/efectos de los fármacos , Ginecología/métodos , Ginecología/organización & administración , Humanos , Oncología Médica/métodos , Oncología Médica/organización & administración , Neoplasias/complicaciones , Neoplasias/patología , Neoplasias/terapia , Obstetricia/métodos , Obstetricia/organización & administración , Guías de Práctica Clínica como Asunto , Embarazo , Calidad de Vida , Medicina Reproductiva/métodos , Medicina Reproductiva/organización & administración , Estados Unidos , Urología/métodos , Urología/organización & administración
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