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1.
Pediatr Blood Cancer ; : e31328, 2024 Sep 17.
Artículo en Inglés | MEDLINE | ID: mdl-39289858

RESUMEN

Lifelong, guideline-based monitoring for late effects is recommended for childhood cancer survivors (CCS). We examined rates of receiving surveillance tests among at-risk young adult CCS in a population-based study (n = 253; 50% Hispanic/Latino; mean post-treatment interval 14.5 years, range: 5-22). Adherence rates were 36.1%, 31.9%, and 36.4% among those indicated for cardiac (n = 119), thyroid (n = 68), and breast (n = 66) surveillance, respectively, indicating that poor surveillance among long-term CCS is widespread. Receipt of any of these surveillance tests was positively associated with being in follow-up care, having any health insurance (vs. none), and receiving education about need for follow-up with surveillance (all p-values less than .05).

2.
Pediatr Blood Cancer ; 71(10): e31220, 2024 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-39096194

RESUMEN

BACKGROUND: Children treated for cancer are at risk for adverse effects of iron due to transfusions administered during prolonged marrow suppression, which may increase exposure to toxic forms of iron, extrahepatic iron accumulation, and long-term organ damage. OBJECTIVE: This study aimed to characterize the severity and organ distribution of clinically significant, multisystem iron overload (IO) in an at-risk cohort of pediatric cancer patients. METHODS: This was a retrospective, cross-sectional study of childhood cancer patients who underwent a magnetic resonance imaging (MRI) due to clinical concern for IO. Data regarding cancer type and treatment, transfusion history, MRI and laboratory results, and treatment for IO were collected. Severity of IO was analyzed by non-parametric tests with respect to clinical characteristics. RESULTS: Of the 103 patients, 98% of whom had a Cancer Intensity Treatment Rating (ITR-3) of 3 or higher, 53% (54/102) had moderate or greater hepatic siderosis, 80% (77/96) had pancreatic siderosis, 4% (3/80) had cardiac siderosis, and 45% (13/29) had pituitary siderosis and/or volume loss. Pancreatic iron was associated with both cardiac (p = .0043) and pituitary iron (p = .0101). In the 73 off-therapy patients, ferritin levels were lower (p = .0008) with higher correlation with liver iron concentration (LIC) (p = .0016) than on-therapy patients. Fifty-eight subjects were treated for IO. CONCLUSION: In this heavily treated cohort of pediatric cancer patients, more than 80% had extrahepatic iron loading, which occurs with significant exposure to toxic forms of iron related to decreased marrow activity in setting of transfusions. Further studies should examine the effects of exposure to reactive iron on long-term outcomes and potential strategies for management.


Asunto(s)
Hemosiderosis , Neoplasias , Humanos , Masculino , Niño , Femenino , Hemosiderosis/etiología , Estudios Retrospectivos , Neoplasias/terapia , Neoplasias/complicaciones , Estudios Transversales , Preescolar , Adolescente , Reacción a la Transfusión , Imagen por Resonancia Magnética , Supervivientes de Cáncer , Lactante , Sobrecarga de Hierro/etiología , Adulto , Transfusión Sanguínea , Estudios de Seguimiento
3.
JNCI Cancer Spectr ; 8(5)2024 Sep 02.
Artículo en Inglés | MEDLINE | ID: mdl-39153000

RESUMEN

BACKGROUND: The long-term financial impact of cancer care has not been adequately addressed in young adults. As part of a remote intervention study, we describe medical financial distress and hardship among young adult survivors of blood cancer at study entry. METHODS: Young adults were recruited from 6 US hospitals. Using a Research Electronic Data Capture link, young adults confirmed their eligibility-namely, currently 18 to 39 years of age, blood cancer diagnosis 3 or more years ago, off active treatment, and not on parent's insurance. Following consent, the baseline assessment was sent. The primary outcome measure, the Personal Financial Wellness Scale, measured financial distress (scored as severe, 1-2; high, 3-4; average, 5-6; and low to no, 7-10). Medical financial hardship encompassed material hardship, psychological impact, and coping behaviors. Descriptive summary statistics and linear regression were used. RESULTS: Among the 126 participants, 54.5% came from minority racial or ethnic groups. Median time since diagnosis was 10 years (interquartile range = 6-16 years), with 56% having received a diagnosis when they were between 18 and 39 years of age. The overall mean (standard deviation) Personal Financial Wellness Scale score was 5.1 (2.4), but 49% reported severe or high distress. In multivariable analysis, female sex, Hispanic ethnicity, and lower income were strongly associated with worse Personal Financial Wellness Scale scores. Among participants with severe financial distress (n = 26), 72% reported 2 or more household material hardships, had worse scores across all psychological domains, and altered survivorship care because of cost (68%). CONCLUSIONS: Nearly half of long-term young adult cancer survivors reported severe or high levels of financial distress. Individuals with severe or high distress also reported more medical financial hardship than other participants. This finding highlights the need for ongoing financial intervention in this vulnerable population. CLINICALTRIALS.GOV: NCT05620979.


Asunto(s)
Adaptación Psicológica , Supervivientes de Cáncer , Estrés Financiero , Adolescente , Adulto , Femenino , Humanos , Masculino , Adulto Joven , Supervivientes de Cáncer/psicología , Supervivientes de Cáncer/estadística & datos numéricos , Costo de Enfermedad , Neoplasias Hematológicas/terapia , Neoplasias Hematológicas/psicología , Neoplasias Hematológicas/economía , Renta , Modelos Lineales , Estados Unidos
4.
Support Care Cancer ; 32(9): 585, 2024 Aug 12.
Artículo en Inglés | MEDLINE | ID: mdl-39134915

RESUMEN

PURPOSE: Survivors of adolescent and young adult (AYA) cancer face significant psychological distress and encounter barriers accessing mental health care. However, limited research exists on psychological health among lesbian, gay, and bisexual (LGB) survivors of AYA cancer, particularly in comparison with heterosexual survivors and LGB individuals without a history of cancer. METHODS: Using the National Health Interview Survey (2013-2018), we identified LGB survivors of AYA cancer, LGB individuals without a history of cancer, and heterosexual survivors of AYA cancer. Sociodemographic, chronic health conditions, modifiable factors (such as smoking and alcohol use), and psychological outcomes were assessed using chi-square tests. Logistic regression models, adjusted for survey weights, evaluated the odds of psychological distress by cancer status after accounting for covariates. Interactions between variables and cancer status were explored. RESULTS: The study comprised 145 LGB survivors, 1450 LGB individuals without a history of cancer, and 1450 heterosexual survivors. Compared to heterosexual survivors, LGB survivors were more likely to report severe distress (aOR = 2.26, p = 0.021) and had higher odds of reporting a mental health care visit (aOR = 1.98, p = 0.003). Odds of severe distress (aOR = 1.36, p = 0.36) and reporting a mental health care visit (aOR = 1.27, p = 0.29) were similar between LGB survivors and LGB individuals without a history of cancer. While 47.8% of LGB survivors reported moderate/severe distress, only 29.7% reported a mental health care visit. CONCLUSION: A history of cancer during the AYA years is associated higher odds of severe psychological distress among LGB survivors compared to heterosexual survivors. However, many LGB survivors with psychological distress have not accessed mental health care.


Asunto(s)
Supervivientes de Cáncer , Distrés Psicológico , Minorías Sexuales y de Género , Humanos , Femenino , Masculino , Adulto Joven , Adolescente , Supervivientes de Cáncer/psicología , Supervivientes de Cáncer/estadística & datos numéricos , Minorías Sexuales y de Género/psicología , Minorías Sexuales y de Género/estadística & datos numéricos , Adulto , Neoplasias/psicología , Aceptación de la Atención de Salud/estadística & datos numéricos , Aceptación de la Atención de Salud/psicología , Servicios de Salud Mental/estadística & datos numéricos , Estrés Psicológico/epidemiología
5.
Cancer ; 130(20): 3519-3529, 2024 Oct 15.
Artículo en Inglés | MEDLINE | ID: mdl-39031841

RESUMEN

BACKGROUND: Adolescents and young adults (AYAs) receiving hematopoietic cell transplantation (HCT) are at high risk of poor psychosocial health. This study aimed to determine whether the Promoting Resilience in Stress Management (PRISM) intervention mitigated these risks during the first 6 months posttransplant. METHODS: This multisite, parallel, randomized trial was conducted from April 2019 to March 2023. Eligible AYAs were aged 12-24 years, English speaking, and within 1 month of HCT for cancer or cancer predisposition syndrome. They were assigned 1:1 to PRISM (a brief, skills-based intervention targeting "resilience resources" [stress management, goal setting, cognitive reframing, and meaning making]) or usual care (UC). Outcomes included total symptoms of depression and anxiety (Hospital Anxiety and Depression Scale; primary outcome), hope (Snyder Hope Scale), resilience (10-item Connor-Davidson Resilience Scale), and health-related quality of life (HRQOL; Pediatric Quality of Life Inventory Cancer Module). Analyses leveraged multivariable linear regressions; exploratory analyses assessed the influence of baseline depression or anxiety. RESULTS: Of 94 enrolled and randomized AYAs, the mean age was 16.7 years (SD, 4.2); 43 (46%) were female, 56 (60%) were non-Hispanic White, 22 (23%) were Hispanic, and nine (10%) were Black. Most (77%) had leukemia. Of n = 50 randomized to PRISM and n = 44 to UC, 37 (74%) and 33 (73%) completed all study procedures, respectively. In intention-to-treat analyses, PRISM did not affect 6-month depression and anxiety (ß = -1.1; 95% CI, -3.7 to 1.5), hope (ß = 0.83; 95% CI, -3.3 to 4.9), resilience (ß = -0.01; 95% CI, -3.0 to 3.0), or HRQOL (ß = 1.5; 95% CI, -4.7 to 7.9). Among AYAs with preexisting anxiety or depression, PRISM recipients reported greater 6-month improvements in hope (score change, +3.71; SD, 6.9) versus UC recipients (score change, -2.76; SD, 6.5) (p = .04). CONCLUSIONS: Resilience coaching did not influence outcomes in this sample. Exploratory findings suggest it may be more effective when directed toward those with concurrent distress.


Asunto(s)
Ansiedad , Depresión , Trasplante de Células Madre Hematopoyéticas , Calidad de Vida , Resiliencia Psicológica , Estrés Psicológico , Humanos , Adolescente , Trasplante de Células Madre Hematopoyéticas/psicología , Femenino , Masculino , Adulto Joven , Depresión/psicología , Estrés Psicológico/terapia , Estrés Psicológico/psicología , Ansiedad/psicología , Ansiedad/terapia , Niño , Distrés Psicológico , Adulto
6.
JAMA Netw Open ; 7(7): e2418736, 2024 Jul 01.
Artículo en Inglés | MEDLINE | ID: mdl-38958979

RESUMEN

Importance: Since 2021, American College of Surgeons Commission on Cancer (CoC) accreditation standards require providing a survivorship program for patients with adult-onset cancer treated with curative intent. Since more than 70% of all patients with cancer in the US are treated at CoC-accredited facilities, this presents an opportunity for a landscape analysis of survivorship care availability. Objective: To determine the prevalence, types, and outcomes of cancer survivorship services at CoC-accredited facilities. Design, Setting, and Participants: This survey study used an anonymous, online, cross-sectional survey conducted from May 4 to 25, 2023. Participants were CoC-accredited facilities in the US representing diverse CoC program categories, institutional characteristics, geographic regions, and practice types. Department of Veterans Affairs cancer programs were excluded due to data usage restrictions. Data were analyzed from July to October 2023. Exposure: CoC Survivorship Standard 4.8 was released in October 2019 and programs were expected to adhere to the Standard beginning January 1, 2021. Main Outcomes and Measures: Questions included self-reported survivorship program characteristics, availability of services aligned to CoC Survivorship Standard 4.8, and perceived program impacts. Response frequencies and proportions were determined in aggregate and by CoC program category. Results: There were 1400 eligible programs, and 384 programs participated (27.4% response rate). All regions and eligible program categories were represented, and most had analytic caseloads of 500 to 4999 patients in 2021. Most survivorship program personnel included nurses (334 programs [87.0%]) and social workers (278 programs [72.4%]), while physical (180 programs [46.9%]) and occupational (87 programs [22.7%]) therapists were less common. Services most endorsed as available for all survivors were screening for new cancers (330 programs [87.5%]), nutritional counseling (325 programs [85.3%]), and referrals to specialists (320 programs [84.7%]), while treatment summaries (242 programs [64.7%]), and survivorship care plans (173 programs [43.0%]), sexual health (217 programs [57.3%]), and fertility (214 programs [56.9%]) were less common. Survivorship services were usually delivered by cancer treatment teams (243 programs [63.3%]) rather than specialized survivorship clinics (120 programs [31.3%]). For resources needed, additional advanced practice clinicians with dedicated survivorship effort (205 programs [53.4%]) and electronic health record enhancements (185 programs [48.2%]) were most endorsed. Lack of referrals and low patient awareness were endorsed as the primary barriers. A total of 335 programs (87.2%) agreed that Survivorship Standard 4.8 helped advance their programs. Conclusions and Relevance: These findings of this survey study of CoC-accredited programs establish a benchmark for survivorship care delivery in the US, identify gaps in specific services and opportunities for intervention, contribute to longitudinal reevaluation for tracking progress nationally, and suggest the value of survivorship care standards.


Asunto(s)
Acreditación , Supervivientes de Cáncer , Neoplasias , Supervivencia , Humanos , Estados Unidos , Estudios Transversales , Supervivientes de Cáncer/estadística & datos numéricos , Neoplasias/terapia , Neoplasias/mortalidad , Acreditación/estadística & datos numéricos , Instituciones Oncológicas/estadística & datos numéricos , Instituciones Oncológicas/normas , Encuestas y Cuestionarios , Femenino , Masculino
7.
J Natl Cancer Inst ; 116(9): 1417-1428, 2024 Sep 01.
Artículo en Inglés | MEDLINE | ID: mdl-38833671

RESUMEN

Survivors of adolescent and young adult (AYA; age 15-39 years at diagnosis) cancer are a growing population with the potential to live for many decades after treatment completion. Survivors of AYA cancer are at risk for adverse long-term outcomes including chronic conditions, secondary cancers, impaired fertility, poor psychosocial health and health behaviors, and financial toxicity. Furthermore, survivors of AYA cancer from racially minoritized and low socioeconomic status populations experience disparities in these outcomes, including lower long-term survival. Despite these known risks, most survivors of AYA cancer do not receive routine survivorship follow-up care, and research on delivering high-quality, evidence-based survivorship care to these patients is lacking. The need for survivorship care was initially advanced in 2006 by the Institute of Medicine. In 2019, the Quality of Cancer Survivorship Care Framework (QCSCF) was developed to provide an evidence-based framework to define key components of optimal survivorship care. In this commentary focused on survivors of AYA cancer, we apply the QCSCF framework to describe models of care that can be adapted for their unique needs, multilevel factors limiting equitable access to care, and opportunities to address these factors to improve short- and long-term outcomes in this vulnerable population.


Asunto(s)
Supervivientes de Cáncer , Disparidades en Atención de Salud , Neoplasias , Supervivencia , Humanos , Adulto Joven , Adolescente , Supervivientes de Cáncer/psicología , Neoplasias/terapia , Neoplasias/mortalidad , Neoplasias/psicología , Adulto , Femenino , Masculino
9.
Leuk Lymphoma ; 65(9): 1357-1361, 2024 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-38733629

RESUMEN

Germline variants of the RUNX1 gene are associated with RUNX1 Familial Platelet Disorder with Associated Myeloid Malignancies (RUNX1-FPDMM), which is characterized by an increased risk of developing myelodysplastic syndrome (MDS) and/or acute myeloid leukemia. Patients with FPDMM have also been described to develop B- or T-cell acute lymphoblastic leukemia. We present a pediatric patient with RUNX1-FPDMM that evolved into concurrent MDS and T-cell acute lymphoblastic leukemia after a decade of monitoring with serial blood counts. We aim to highlight the treatment challenges and clinical decision-making that may be anticipated in this unique disorder, as well as the potentially curative role for allogenic hematopoietic stem cell transplant in the first complete remission.


Asunto(s)
Subunidad alfa 2 del Factor de Unión al Sitio Principal , Mutación de Línea Germinal , Síndromes Mielodisplásicos , Leucemia-Linfoma Linfoblástico de Células T Precursoras , Humanos , Subunidad alfa 2 del Factor de Unión al Sitio Principal/genética , Síndromes Mielodisplásicos/genética , Síndromes Mielodisplásicos/terapia , Síndromes Mielodisplásicos/diagnóstico , Leucemia-Linfoma Linfoblástico de Células T Precursoras/genética , Leucemia-Linfoma Linfoblástico de Células T Precursoras/diagnóstico , Leucemia-Linfoma Linfoblástico de Células T Precursoras/terapia , Masculino , Niño , Trastornos de las Plaquetas Sanguíneas/genética , Trastornos de las Plaquetas Sanguíneas/complicaciones , Trastornos de las Plaquetas Sanguíneas/diagnóstico , Trasplante de Células Madre Hematopoyéticas , Predisposición Genética a la Enfermedad , Femenino , Leucemia Mieloide Aguda , Trastornos de la Coagulación Sanguínea Heredados
10.
J Cancer Surviv ; 18(4): 1190-1199, 2024 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-38739299

RESUMEN

PURPOSE: To develop United States (US) standards for survivorship care that informs (1) essential health system policy and process components and (2) evaluation of the quality of survivorship care. METHODS: The National Cancer Institute and the Department of Veterans Affairs led a review to identify indicators of quality cancer survivorship care in the domains of health system policy, process, and evaluation/assessment. A series of three virtual consensus meetings with survivorship care and research experts and advocates was conducted to rate the importance of the indicators and refine the top indicators. The final set of standards was developed, including ten indicators in each domain. RESULTS: Prioritized items were survivor-focused, including processes to both assess and manage physical, psychological, and social issues, and evaluation of patient outcomes and experiences. Specific indicators focused on developing a business model for sustaining survivorship care and collecting relevant business metrics (e.g., healthcare utilization, downstream revenue) to show value of survivorship care to health systems. CONCLUSIONS: The National Standards for Cancer Survivorship Care can be used by health systems to guide development of new survivorship care programs or services or to assess alignment and enhance services in existing survivorship programs. Given the variety of settings providing care to survivors, it is necessary for health systems to adapt these standards based on factors including age-specific needs, cancer types, treatments received, and health system resources. IMPLICATIONS FOR CANCER SURVIVORS: With over 18 million cancer survivors in the United States, many of whom experience varied symptoms and unmet needs, it is essential for health systems to have a comprehensive strategy to provide ongoing care. The US National Standards for Survivorship Care should serve as a blueprint for what survivors and their families can anticipate after a cancer diagnosis to address their needs.


Asunto(s)
Supervivientes de Cáncer , Consenso , Neoplasias , Calidad de la Atención de Salud , Supervivencia , Humanos , Estados Unidos , Calidad de la Atención de Salud/normas , Neoplasias/terapia , Neoplasias/mortalidad , Nivel de Atención
12.
Cancer ; 130(17): 3011-3022, 2024 Sep 01.
Artículo en Inglés | MEDLINE | ID: mdl-38676935

RESUMEN

BACKGROUND: Survivors of adolescent and young adult (AYA) cancer experience significant psychological distress and encounter barriers to accessing mental health care. Few studies have investigated racial/ethnic disparities in psychological health outcomes among AYA survivors, and none have compared outcomes within a racially minoritized population. METHODS: National Health Interview Survey data (2010-2018) were analyzed that identified non-Hispanic Black (hereafter, Black) survivors of AYA cancer and age- and sex-matched Black noncancer controls. Sociodemographic factors, chronic health conditions, modifiable behaviors (smoking and alcohol use), and psychological outcomes were assessed with χ2 tests. Logistic regression models, adjusted for survey weights, were used to evaluate the odds of psychological distress by cancer status after adjusting for covariates. Interactions between variables and cancer status were investigated. RESULTS: The study included 334 Black survivors of AYA cancer and 3340 Black controls. Compared to controls, survivors were more likely to report moderate/severe distress (odds ratio [OR], 1.64; p < .001), use mental health care (OR, 1.53; p = .027), report an inability to afford mental health care (OR, 3.82; p < .001), and use medication for anxiety and/or depression (OR, 2.16; p = .001). Forty-one percent of survivors reported moderate/severe distress, and only 15% used mental health care. Among survivors, ages 18-39 years (vs. 40-64 years) and current smoking (vs. never smoking) were associated with the presence of moderate/severe distress. Among survivors with distress, high poverty status was associated with reduced utilization of mental health care. CONCLUSIONS: A cancer diagnosis for a Black AYA is associated with greater psychological distress within an already vulnerable population.


Asunto(s)
Negro o Afroamericano , Supervivientes de Cáncer , Distrés Psicológico , Humanos , Femenino , Masculino , Adulto Joven , Adolescente , Supervivientes de Cáncer/psicología , Supervivientes de Cáncer/estadística & datos numéricos , Adulto , Negro o Afroamericano/psicología , Negro o Afroamericano/estadística & datos numéricos , Neoplasias/psicología , Neoplasias/terapia , Neoplasias/etnología , Aceptación de la Atención de Salud/estadística & datos numéricos , Estrés Psicológico/epidemiología , Servicios de Salud Mental/estadística & datos numéricos
13.
J Adolesc Young Adult Oncol ; 13(3): 557-563, 2024 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-38394227

RESUMEN

Background: Adolescents and young adults (AYAs) commonly receive cancer care in the community setting, but the availability of treatment options, resources, and support services for this population is not well known. The National Cancer Institute Community Oncology Research Program (NCORP) funds a network of practices whose mission is to increase access to cancer care and clinical trials in the community setting. We describe our interdisciplinary methodological approach to identify and characterize NCORP practices where AYAs receive cancer care. Methods: NCORP practices completed a cross-sectional Landscape Assessment to describe resources and practice characteristics. We established an interdisciplinary team of stakeholders to analyze the Landscape Assessment data relating to AYAs. Through an iterative process, we assessed NCORP practice responses to questions assessing AYA cancer care capacity, determined a threshold to define practices treating AYAs, and characterized these practices. Results: We determined that practices provide cancer care to AYAs if the following criteria were met: (1) endorsed having an AYA program (n = 20), (2) AYAs comprised ≥5% of annual cancer cases (n = 55), or (3) the practice treated ≥50 AYA cancer cases annually (n = 70). Of 271 NCORP practices, 100 (37%) met any criteria, whereas 87 (32%) did not; 84 (31%) could not be classified due to missing or unknown data. Conclusion: Using an interdisciplinary process, we define practices that treat AYAs in the community. We posit a uniform approach to examine resources and practice capacity for AYAs receiving cancer care across the United States to guide future AYA-focused cancer care delivery research development.


Asunto(s)
Atención a la Salud , Neoplasias , Humanos , Adolescente , Adulto Joven , Femenino , Neoplasias/terapia , Masculino , Estudios Transversales , Adulto , Atención a la Salud/normas , Estados Unidos
14.
JCO Oncol Pract ; 20(5): 631-642, 2024 May.
Artículo en Inglés | MEDLINE | ID: mdl-38194612

RESUMEN

PURPOSE: Database linkage between cancer registries and clinical trial consortia has the potential to elucidate referral patterns of children and adolescents with newly diagnosed cancer, including enrollment into cancer clinical trials. This study's primary objective was to assess the feasibility of this linkage approach. METHODS: Patients younger than 20 years diagnosed with incident cancer during 2012-2017 in the Kentucky Cancer Registry (KCR) were linked with patients enrolled in a Children's Oncology Group (COG) study. Matched patients between databases were described by sex, age, race and ethnicity, geographical location when diagnosed, and cancer type. Logistic regression modeling identified factors associated with COG study enrollment. Timeliness of patient identification by KCR was reported through the Centers for Disease Control and Prevention's Early Case Capture (ECC) program. RESULTS: Of 1,357 patients reported to KCR, 47% were determined by matching to be enrolled in a COG study. Patients had greater odds of enrollment if they were age 0-4 years (v 15-19 years), reported from a COG-affiliated institution, and had renal cancer, neuroblastoma, or leukemia. Patients had lower odds of enrollment if Hispanic (v non-Hispanic White) or had epithelial (eg, thyroid, melanoma) cancer. Most (59%) patients were reported to KCR within 10 days of pathologic diagnosis. CONCLUSION: Linkage of clinical trial data with cancer registries is a feasible approach for tracking patient referral and clinical trial enrollment patterns. Adolescents had lower enrollment compared with younger age groups, independent of cancer type. Population-based early case capture could guide interventions designed to increase cancer clinical trial enrollment.


Asunto(s)
Ensayos Clínicos como Asunto , Neoplasias , Humanos , Adolescente , Niño , Femenino , Masculino , Neoplasias/terapia , Neoplasias/epidemiología , Preescolar , Lactante , Recién Nacido , Sistema de Registros , Adulto Joven , Selección de Paciente , Almacenamiento y Recuperación de la Información
15.
JCO Oncol Pract ; 20(4): 491-502, 2024 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-38252911

RESUMEN

PURPOSE: Individuals diagnosed with cancer between 15 and 39 years (adolescent and young adult [AYA]) face unique vulnerability. Detail is lacking about care delivery for these patients, especially those with ALL. We address these knowledge gaps by describing AYA ALL care delivery details at National Cancer Institute Community Oncology Research Program (NCORP) (sub)affiliates by model of care. METHODS: Participating institutions treated at least one AYA with ALL from 2012 to 2016. Study-specific criteria were used to determine the number of unique clinical facilities (CFs) per NCORP and their model of care (adult/internal medicine [IM], pediatric, mixed [both]). Surveys completed by NCORPs for each CF by model of care captured size, resources, services, and communication. RESULTS: Among 84 participating CFs (adult/IM, n=47; pediatric, n=15; mixed, n=24), 34% treated 5-10 AYAs with ALL annually; adult/IM CFs more often treated <5 (adult/IM, 60%; pediatric, 40%; mixed, 29%). Referral decisions were commonly driven by an age/diagnosis combination (58%), with frequent ALL-specific age minimums (87%) or maximums (80%). Medical, navigational, and social work services were similar across models while psychology was available at more pediatric CFs (pediatric, 80%; adult/IM, 40%; mixed, 46%-54%). More pediatric or mixed CFs reported oncologists interacting with pediatric/adult counterparts via tumor boards (pediatric, 93%; adult/IM, 26%; mixed, 96%) or initiating contact (pediatric, 100%; adult/IM, 77%; mixed 96%); more pediatric CFs reported an affiliated counterpart (pediatric, 53%; adult, 19%). Most CFs reported no AYA-specific resources (79%) or meetings (83%-98%). CONCLUSION: System-level aspects of AYA ALL care delivery have not been examined previously. At NCORPs, these characteristics differ by models of care. Additional work is ongoing to investigate the impact of these facility-level factors on guideline-concordant care in this population. Together, these findings can inform a system-level intervention for diverse practice settings.


Asunto(s)
Neoplasias , Oncólogos , Humanos , Adolescente , Adulto Joven , Niño , Neoplasias/epidemiología , Neoplasias/terapia , Neoplasias/diagnóstico , Atención a la Salud , Encuestas y Cuestionarios
16.
Cancer Causes Control ; 35(1): 111-120, 2024 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-37597065

RESUMEN

PURPOSE: To examine the prevalence of female sexual dysfunction (FSD), male erectile dysfunction (ED), and the prevalence and correlates of sexual health discussions between early-onset CRC survivors and their health care providers. METHODS: An online, cross-sectional survey was administered in partnership with a national CRC advocacy organization. Respondents (n = 234; diagnosed < 50 years, 6-36 months from diagnosis/relapse) were colon (36.8%) and rectal (63.3%) cancer survivors (62.5% male). The Female Sexual Function Index (FSFI-6) was used to measure FSD, and the International Index of Erectile Function (IIEF-5) was used to measure ED. Survivors reported whether a doctor communicated with them about sexual issues during/after treatment. RESULTS: Among females (n = 87), 81.6% had FSD (mean FSFI-6 score = 14.3 [SD±6.1]). Among males (n = 145), 94.5% had ED (mean IIEF-5 score = 13.6 [SD±3.4]). Overall, 59.4% of males and 45.4% of females reported a sexual health discussion. Among the total sample, older age of diagnosis and relapse were significantly associated with reporting a discussion, while female sex was negatively associated with reporting a sexual health discussion. Among males, older age at diagnosis and relapse, and among females, older age of diagnosis, were significantly associated with reporting a sexual health discussion. CONCLUSION: The prevalence of FSD and ED were high (8 in 10 females reporting FSD, almost all males reporting ED), while reported rates of sexual health discussion were suboptimal (half reported discussion). Interventions to increase CRC provider awareness of patients at risk for not being counseled are needed to optimize long-term health outcomes.


Asunto(s)
Neoplasias Colorrectales , Disfunción Eréctil , Disfunciones Sexuales Fisiológicas , Salud Sexual , Humanos , Masculino , Femenino , Estudios Transversales , Encuestas y Cuestionarios , Disfunciones Sexuales Fisiológicas/etiología , Disfunciones Sexuales Fisiológicas/complicaciones , Disfunción Eréctil/epidemiología , Disfunción Eréctil/complicaciones , Sobrevivientes , Neoplasias Colorrectales/epidemiología , Recurrencia
17.
J Adolesc Young Adult Oncol ; 13(1): 97-104, 2024 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-37477884

RESUMEN

Purpose: Adolescents and young adults (AYAs, 15-39 years) with cancer experience disparities in care and outcomes compared with older/younger patients. AYAs receive care from medical and pediatric oncologists, however, little is known about the extent of training fellows receive. This needs assessment evaluating current AYA oncology (AYA-O) education in pediatric and medical oncology fellowship programs to identify knowledge gaps for curricular development. Methods: An anonymous, cross-sectional, web-based survey developed by pediatric and medical oncologists was sent to medical (n = 178) and pediatric (n = 119) hematology/oncology program directors (PDs) at 251 sites in the United States. PDs were asked to participate and distribute the survey to their fellows. Survey questions addressed current AYA curriculum, provider comfort, and priorities for future AYA educational content. Results: Participants from 69/251 programs responded (program response rate = 27%), including 51 PDs (32 pediatric, 19 medical oncology) and 58 fellows (33 pediatric, 25 medical oncology). Eighty-five percent of PDs (44/51) reported lacking formal AYA curricula. Of these, 80% (35/44) offer some topic-specific lectures, while 20% (9/44) provide little/no education for any topics. For nearly all topics, at least 45% of combined respondents reported little/no education. Respondents believe AYA topics are important for inclusion in future curricula. The most important topics for inclusion reported were oncofertility (82%), survivorship (78%), and communication (77%). Conclusions: There are large and actionable gaps in AYA-O education during fellowship training. Efforts are underway to develop AYA-O curriculum to provide both medical and pediatric oncology fellows with the knowledge and skills required to provide optimal AYA care.


Asunto(s)
Becas , Neoplasias , Humanos , Estados Unidos , Adolescente , Adulto Joven , Niño , Estudios Transversales , Educación de Postgrado en Medicina , Curriculum , Neoplasias/terapia , Encuestas y Cuestionarios
18.
Pediatr Blood Cancer ; 70 Suppl 6: e30564, 2023 09.
Artículo en Inglés | MEDLINE | ID: mdl-37439574

RESUMEN

Over the past few decades, 5-year cancer survival has steadily improved for all adolescents and young adults (AYA, 15-39 years at diagnosis) combined. While encouraging, this progress simultaneously highlights a compelling need for improving survival in higher risk AYA subsets and for addressing health outcomes and health-related quality of life (HRQoL) among long-term survivors. The Children's Oncology Group (COG), in collaboration with the National Cancer Institute (NCI) and the adult network groups within the NCI National Clinical Trials Network (NCTN), has developed a large and growing portfolio of therapeutic AYA cancer clinical trials to identify optimal treatment approaches for common AYA cancers. Additional initiatives, led by the COG AYA Oncology Discipline Committee for increasing collaboration between the COG and the adult network groups, optimizing AYA clinical trial enrollment, and standardizing the assessment of HRQoL, have been highly successful to date. Further, NCTN-wide collaborations are currently underway focused on improving survival for AYA malignancies with poor prognosis and, through development of supportive care and care delivery trials, reducing the short- and long-term toxicity caused by cancer treatment. Leveraging the research infrastructure within the NCTN and the NCI Community Oncology Research Program, the COG will continue to champion meaningful advancements in health and survival for AYAs with cancer.


Asunto(s)
Neoplasias , Calidad de Vida , Humanos , Niño , Adolescente , Adulto Joven , Oncología Médica , Neoplasias/terapia , Atención a la Salud , Instituciones Oncológicas
19.
Pediatr Blood Cancer ; : e30550, 2023 Jul 07.
Artículo en Inglés | MEDLINE | ID: mdl-37416942

RESUMEN

In two randomized trials (Children's Oncology Group ACCL0431 and International Childhood Liver Tumour Strategy Group SIOPEL-6), sodium thiosulfate (STS) demonstrated efficacy in preventing cisplatin-induced hearing loss (CIHL). However, the measures used in those trials have been superseded by the consensus International Society of Paediatric Oncology (SIOP) Ototoxicity Scale. To provide benchmark data for STS efficacy when using this contemporary scale, we reanalyzed ACCL0431 hearing outcomes with the SIOP scale and using multiple timepoints. Compared to the control arm, STS significantly reduced CIHL when assessed by the SIOP scale across these different approaches. These results provide critical data to inform treatment discussions and support future potential trial designs comparing otoprotectants.

20.
Oncologist ; 28(9): e784-e792, 2023 09 07.
Artículo en Inglés | MEDLINE | ID: mdl-37284853

RESUMEN

BACKGROUND: Screening guidelines for childhood cancer survivors treated with radiation currently rely on broad anatomic irradiated regions (IR) to determine risk for late effects. However, contemporary radiotherapy techniques use volumetric dosimetry (VD) to define organ-specific exposure, which supports more specific screening recommendations that could be less costly. PATIENTS AND METHODS: This was a cross-sectional study of 132 patients treated with irradiation at Children's Hospital Los Angeles from 2000 to 2016. For 5 key organs (cochlea, breast, heart, lung, and colon), radiation exposure was determined retrospectively using both IR and VD methods. Under each method, Children's Oncology Group Long-Term Follow-Up Guidelines were used to identify organs flagged for screening and recommended screening tests. Projected screening costs incurred under each method were computed through age 65 using insurance claims data. RESULTS: Median age at the end of treatment was 10.6 years (range, 1.4-20.4). Brain tumor was the most common diagnosis (45%) and head/brain the most common irradiated region (61%). For all 5 organs, use of VD rather than IR resulted in fewer recommended screening tests. This led to average cumulative estimated savings of $3769 (P = .099), with significant savings in patients with CNS tumors (P = .012). Among patients with savings, average savings were $9620 per patient (P = .016) and significantly more likely for females than males (P = .027). CONCLUSION: Use of VD to enhance precision of guideline-based screening for radiation-related late effects permits fewer recommended screening tests and generates cost-savings.


Asunto(s)
Neoplasias Encefálicas , Neoplasias , Traumatismos por Radiación , Masculino , Femenino , Niño , Humanos , Lactante , Preescolar , Adolescente , Adulto Joven , Adulto , Anciano , Neoplasias/radioterapia , Estudios Retrospectivos , Estudios Transversales , Detección Precoz del Cáncer , Estudios de Cohortes
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