Publications by authors named "David R Freyer"

109 Publications

Late health outcomes after dexrazoxane treatment: A report from the Children's Oncology Group.

Cancer 2021 Oct 13. Epub 2021 Oct 13.

Oishei Children's Hospital, Roswell Park Comprehensive Center, University at Buffalo Jacobs School of Medicine and Biomedical Sciences, Buffalo, New York.

Background: The objective of this study was to examine long-term outcomes among children newly diagnosed with cancer who were treated in dexrazoxane-containing clinical trials.

Methods: P9404 (acute lymphoblastic leukemia/lymphoma [ALL]), P9425 and P9426 (Hodgkin lymphoma), P9754 (osteosarcoma), and Dana-Farber Cancer Institute 95-01 (ALL) enrolled 1308 patients between 1996 and 2001: 1066 were randomized (1:1) to doxorubicin with or without dexrazoxane, and 242 (from P9754) were nonrandomly assigned to receive dexrazoxane. Trial data were linked with the National Death Index, the Organ Procurement and Transplantation Network, the Pediatric Health Information System (PHIS), and Medicaid. Osteosarcoma survivors from the Childhood Cancer Survivor Study (CCSS; n = 495; no dexrazoxane) served as comparators in subanalyses. Follow-up events were assessed with cumulative incidence, Cox regression, and Fine-Gray methods.

Results: In randomized trials (cumulative prescribed doxorubicin dose, 100-360 mg/m ; median follow-up, 18.6 years), dexrazoxane was not associated with relapse (hazard ratio [HR], 0.84; 95% confidence interval [CI], 0.63-1.13), second cancers (HR, 1.19; 95% CI, 0.62-2.30), all-cause mortality (HR, 1.07; 95% CI, 0.78-1.47), or cardiovascular mortality (HR, 1.45; 95% CI, 0.41-5.16). Among P9754 patients (all exposed to dexrazoxane; cumulative doxorubicin, 450-600 mg/m ; median follow-up, 16.6-18.4 years), no cardiovascular deaths or heart transplantation occurred. The 20-year heart transplantation rate among CCSS osteosarcoma survivors (mean doxorubicin, 377 ± 145 mg/m ) was 1.6% (vs 0% in P9754; P = .13). Among randomized patients, serious cardiovascular outcomes (cardiomyopathy, ischemic heart disease, and stroke) ascertained by PHIS/Medicaid occurred less commonly with dexrazoxane (5.6%) than without it (17.6%; P = .02), although cardiomyopathy rates alone did not differ (4.4% vs 8.1%; P = .35).

Conclusions: Dexrazoxane did not appear to adversely affect long-term mortality, event-free survival, or second cancer risk.
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http://dx.doi.org/10.1002/cncr.33974DOI Listing
October 2021

Project Forward: A Population-Based Cohort Among Young Adult Survivors of Childhood Cancers.

JNCI Cancer Spectr 2021 Oct 17;5(5):pkab068. Epub 2021 Jul 17.

Department of Preventive Medicine, Keck School of Medicine, University of Southern California, Los Angeles, CA, USA.

Background: Childhood cancer survivors (CCS) face increased risk of morbidity and are recommended to receive lifelong cancer-related follow-up care. Identifying factors associated with follow-up care can inform efforts to support the long-term health of CCS.

Methods: Eligible CCS (diagnosed between 1996 and 2010) identified through the Los Angeles County Cancer Surveillance Program responded to a self-report survey that assessed demographic, clinical, health-care engagement, and psychosocial risk and protective factors of recent (prior 2 years) cancer-related follow-up care. Weighted multivariable logistic regression was conducted to identify correlates of care. All statistical tests were 2-sided.

Results: The overall response rate was 44.9%, with an analytical sample of n = 1106 (54.2% Hispanic; mean [SD] ages at survey, diagnosis, and years since diagnosis were 26.2 [4.9], 11.6 [5.4], and 14.5 [4.4] years, respectively). Fifty-seven percent reported a recent cancer-related visit, with lower rates reported among older survivors. Having insurance, more late effects, receipt of a written treatment summary, discussing long-term care needs with treating physician, knowledge of the need for long-term care, having a regular source of care, and higher health-care self-efficacy were statistically significantly associated with greater odds of recent follow-up care, whereas older age, Hispanic or Other ethnicity (vs non-Hispanic White), and years since diagnosis were associated with lower odds of recent care (all < .05).

Conclusions: Age and ethnic disparities are observed in receipt of follow-up care among young adult CCS. Potential intervention targets include comprehensive, ongoing patient education; provision of written treatment summaries; and culturally tailored support to ensure equitable access to and the utilization of care.
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http://dx.doi.org/10.1093/jncics/pkab068DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8462512PMC
October 2021

Patterns of Cancer Care and Association with Survival among Younger Adolescents and Young Adults: A Population-based Retrospective Cohort Study.

Cancer Epidemiol Biomarkers Prev 2021 Sep 3. Epub 2021 Sep 3.

Divisions of Hematology, Oncology and Blood and Marrow Transplantation, Children's Hospital of Los Angeles.

Background: Younger adolescents and young adults may receive care from either adult or pediatric oncologists. We explored patterns of care in this population and whether survival is associated with provider type.

Methods: Utilizing the California Cancer Registry, we examined a cohort of 9,993 AYAs diagnosed with cancer aged 15-24 years from 1999-2008. Provider type (adult/pediatric) was determined by individual physician identifiers. For provider type, multivariable logistic regression models were adjusted for age, sex, race/ethnicity, socioeconomic status, diagnosis, and stage. For observed survival, Cox proportional hazard models were additionally adjusted for provider type. Odds ratios (OR) and hazard ratios (HR) with 95% confidence intervals (95%CI) were determined.

Results: Most patients saw adult providers (87.3% overall; 72.7% aged 15-19 years). Patients with acute leukemia, sarcoma, and central nervous system (CNS) malignancies more often saw pediatric providers (OR [95%CI] adult versus pediatric 0.48 [0.39-0.59], 0.74 [0.60-0.92], 0.76 [0.60-0.96], respectively); those with germ cell tumors and other cancers, including carcinomas, more often saw adult providers (2.26 [1.72-2.98], 1.79 [1.41-2.27], respectively). In aggregate and for most cancers individually, there was no survival difference by provider type (overall HR [95%CI] 1.00 [0.86-1.18]). Higher survival was associated with pediatric providers for CNS malignancies (1.63 [1.12-2.37]) and rhabdomyosarcoma (2.22 [1.03-4.76]), and with adult providers for non-Hodgkin lymphoma (0.61 [0.39-0.96]).

Conclusions: Most AYAs 15-24 years old are treated by medical oncologists. In general, survival was not associated with provider type.

Impact: Current patterns of care for this population support increased collaboration between medical and pediatric oncology, including joint clinical trials.
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http://dx.doi.org/10.1158/1055-9965.EPI-21-0530DOI Listing
September 2021

Time from Diagnosis and Correlates of Health-Related Quality of Life among Young Adult Colorectal Cancer Survivors.

Cancers (Basel) 2021 Aug 11;13(16). Epub 2021 Aug 11.

Department of Medical Oncology and Therapeutics Research, City of Hope National Medical Center, Duarte, CA 91010, USA.

The incidence of colorectal cancer (CRC) is rising among young adults. Health-related quality of life (HRQoL) in survivorship is not well-described in this population. We assessed HRQoL among young adult CRC survivors diagnosed from age 18-39 (AYAs) to examine differences by time from diagnosis, and to identify key correlates. A cross-sectional online survey was administered in collaboration with a national patient advocacy organization. The Functional Assessment of Cancer Therapy (FACT-C) was used to measure HRQoL, which assesses HRQoL globally and across 4 domains: emotional, physical, social, and functional. -tests were conducted to compare HRQoL between survivors who were 6-18 months versus 19-36 months from diagnosis or relapse and multiple linear regression was conducted to identify correlates. The sample ( = 196) had a mean age of 32.2(SD ± 4.5); 116 (59.9%) were male; and the self-reported tumor location was colon (39.3%) or rectal (60.7%). The majority (56.4%) were diagnosed with stage 2 disease; 96.9% were non-metastatic. The mean global HRQoL score was 67.7 out of a possible score of 136. Across domains, mean scores were low. Emotional and physical well-being were significantly higher among survivors who were 19-36 months from diagnosis/relapse compared to those 6-18 months from diagnosis/relapse. Longer time from diagnosis and older current age were associated with higher HRQoL, while more intensive treatment and higher clinical disease stage were negatively associated, particularly in the emotional and physical domains. Overall, HRQoL was low in this population, and further research is needed to inform age-appropriate interventions to improve HRQoL for AYA CRC survivors.
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http://dx.doi.org/10.3390/cancers13164045DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8392733PMC
August 2021

A Population-Based Analysis of 30-Year Mortality among Five-Year Survivors of Adolescent and Young Adult Cancer: The Roles of Primary Cancer, Subsequent Malignancy, and Other Health Conditions.

Cancers (Basel) 2021 Aug 5;13(16). Epub 2021 Aug 5.

Cancer and Blood Disease Institute, Children's Hospital Los Angeles, Los Angeles, CA 90027, USA.

Despite an aggregate 5-year survival of 85%, many adolescents and young adults (AYAs, 15-39 years old) treated for cancer die prematurely decades later. To develop a more complete understanding of this problem, particularly the role of specific subsequent malignant neoplasms (SMNs), we used the SEER-9 registry to analyze causes of death (COD: Primary cancer, SMN, non-malignant conditions) among 162,317 AYAs diagnosed with first cancer between 1975-2012 and surviving 5 or more years. Cumulative mortality, attributable mortality, standardized mortality ratios (SMRs), and adjusted hazard ratios were determined for each cancer site and COD. At 30 years, cumulative mortality due to primary cancer was matched by that due to all other causes (12.8% 95% CI [12.5%, 13.0%] for primary cancer versus 12.8% [12.5%, 13.1%] for all other causes combined) in the combined cohort, and was overtaken by non-malignant conditions in Hodgkin lymphoma, testicular, cervical/uterine, and thyroid cancers. Overall, SMNs accounted for 20% of malignant deaths, the most common being lung/bronchus (25.6%), colorectal/liver/biliary/pancreas (19.1%), and breast (10.2%). For non-malignant conditions, excess risk was noted overall (SMR 1.37, 95% CI [1.34, 1.40]) and for infectious (1.97 [1.85, 2.10]), renal (1.85 [1.60, 2.13]), cardio/cerebrovascular (1.38 [1.33, 1.43]), and suicide (1.15 [1.04, 1.27]). Racial minorities were at significantly higher risk across all COD. Safer therapy, longitudinal monitoring, and primary/secondary preventive strategies are needed to reduce late mortality in this vulnerable population.
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http://dx.doi.org/10.3390/cancers13163956DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8394271PMC
August 2021

Recommendations for Age-Appropriate Testing, Timing, and Frequency of Audiologic Monitoring During Childhood Cancer Treatment: An International Society of Paediatric Oncology Supportive Care Consensus Report.

JAMA Oncol 2021 Oct;7(10):1550-1558

Department of Audiovestibular Medicine and Cochlear Implant, Great Ormond Street Hospital for Children National Health Service Trust, London, United Kingdom.

Importance: Ototoxicity is an irreversible direct and late effect of certain childhood cancer treatments. Audiologic surveillance during therapy as part of the supportive care pathway enables early detection of hearing loss, decision-making about ongoing cancer treatment, and, when applicable, the timely use of audiologic interventions. Pediatric oncologic clinical practice and treatment trials have tended to be driven by tumor type and tumor-specific working groups. Internationally accepted standardized recommendations for monitoring hearing during treatment have not previously been agreed on.

Objective: To provide standard recommendations on hearing loss monitoring during childhood cancer therapy for clinical practice.

Methods: An Ototoxicity Task Force was formed under the umbrella of the International Society of Paediatric Oncology, consisting of international audiologists, otolaryngologists, and leaders in the field of relevant pediatric oncology tumor groups. Consensus meetings conducted by experts were organized, aimed at providing standardized recommendations on age-directed testing, timing, and frequency of monitoring during cancer treatment based on literature and consensus. Consensus statements were prepared by the core group, adapted following several videoconferences, and finally agreed on by the expert panel.

Findings: The consensus reached was that children who receive ototoxic cancer treatment (platinum agents, cranial irradiation, and/or brain surgery) require a baseline case history, monitoring of their middle ear and inner ear function, and assessment of tinnitus at each audiologic follow-up. As a minimum, age-appropriate testing should be performed before and at the end of treatment. Ideally, audiometry with counseling before each cisplatin cycle should be considered in the context of the individual patient, specific disease, feasibility, and available resources.

Conclusions And Relevance: This is an international multidisciplinary consensus report providing standardized supportive care recommendations on hearing monitoring in children undergoing potentially ototoxic cancer treatment. The recommendations are intended to improve the care of children with cancer and facilitate comparative research on the timing and development of hearing loss caused by different cancer treatment regimens.
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http://dx.doi.org/10.1001/jamaoncol.2021.2697DOI Listing
October 2021

Insurance coverage change and survivorship care among young adult survivors of childhood cancer.

Health Serv Res 2021 Aug 11. Epub 2021 Aug 11.

Department of Epidemiology and Biostatistics, School of Medicine, Chao Family Comprehensive Cancer Center, University of California, Irvine, California, USA.

Objective: To (1) characterize change in type of insurance coverage among childhood cancer survivors from diagnosis to survivorship and (2) examine whether insurance change is associated with cancer-related follow-up care utilization.

Data Sources: Participants in this study were derived from the Project Forward study, a population-based, observational study of childhood cancer survivors in Los Angeles County that used California Cancer Registry data to identify participants.

Study Design: Multivariable logistic regression models incorporating survey nonresponse weights estimated the change in the marginal predicted probabilities of insurance change and survivorship care, adjusting for demographic, socioeconomic, and clinical covariates and clustering by treating hospital.

Data Collection/extraction Methods: Study participants were diagnosed with cancer who were younger than age 20 years while living in Los Angeles County from 1996 to 2010 and were older than the age 18 years at the time of survey participation, from 2015 to 2017 (N = 1106).

Principal Findings: Most participants were 18-26 years of age, male, diagnosed before 2004, Hispanic/Latino race/ethnicity, single, without children, highly educated, not employed full time, and lived with their parents at survey. Almost half (N = 529) of participants experienced insurance change from diagnosis to survivorship. Insurance change was associated with insurance coverage at diagnosis, as those who were uninsured were most likely to experience change and gain coverage during survivorship (by 51 percentage points [ppt], standard error [SE] of 0.05). Survivors who experienced any change had decreased probability of reporting a recent cancer-related follow-up care visit, a disparity that was magnified for those who lost insurance coverage (-5 ppt, SE 0.02 for those who gained coverage; -15 ppt, SE 0.04 for those who lost coverage).

Conclusions: Insurance coverage change was associated with lower cancer-related follow-up care utilization. Indeed, survivors who experienced any insurance coverage change had decreased probability of having a cancer-related follow-up care visit, and this was magnified for those who lost their insurance coverage.
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http://dx.doi.org/10.1111/1475-6773.13868DOI Listing
August 2021

Identifying metrics of success for transitional care practices in childhood cancer survivorship: A qualitative interview study of parents.

Cancer Med 2021 Sep 6;10(18):6239-6248. Epub 2021 Aug 6.

Division of Health Policy and Management, School of Public Health, University of Minnesota, Minneapolis, Minnesota, USA.

Background: Survivor-focused care for adolescent and young adult (AYA) childhood cancer survivors (CCS) often involves their parents. Recognizing the importance of parents in the ongoing care of CCS, our study sought to identify key aspects of a successful transition for CCS from pediatric- to adult-centered care from the parent perspective.

Methods: We conducted qualitative interviews with 26 parents of CCS who were receiving care in the long-term follow-up (LTFU) clinic at a single institution. We used a semi-structured interview protocol with the parents and conducted a thematic content analysis.

Results: Using a constant comparison approach, data revealed three primary themes regarding parents' perspectives toward ensuring a seamless transition from pediatric- to adult-centered follow-up care: (1) the transition needs to include seamless communication between all involved parties, (2) survivors need to demonstrate sufficient health care self-efficacy in order to achieve a successful transition, and (3) the survivor-focused care should include support for survivors' overall well-being, including financial and health insurance literacy.

Conclusions: For parents of AYA CCS, the optimal pediatric to adult care transition model should include mechanisms that facilitate communication between parents, CCS, and survivor-focused providers while also supporting self-efficacy and financial literacy as it relates to health insurance.
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http://dx.doi.org/10.1002/cam4.4164DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8446395PMC
September 2021

A Case Series of Multiple Primary Malignancies Among Patients With Advanced Melanoma.

Cureus 2021 Jun 6;13(6):e15480. Epub 2021 Jun 6.

Division of Oncology, University of Southern California - Keck School of Medicine, Norris Comprehensive Cancer Center, Los Angeles, USA.

Multiple primary malignancies (MPM) are described as two or more primary tumors within the same individual. The impact of MPM on the tumor microenvironment among patients with melanoma is poorly understood. Here, we describe this unique group of patients who have both advanced melanoma and at least one other primary malignancy and report their survival outcomes. In this study, patients with advanced melanoma and a second primary malignancy were identified. Medical records were reviewed for cancer treatment history. Kaplan-Meier methods were used to derive survival curves and estimate overall survival (OS), and log-rank tests were used to compare OS. Among 11 MPM patients, the most common non-melanoma cancers were breast (n = 3) and thyroid (n = 3). Median OS was 153.5 months for all patients. Median OS for synchronous MPM (sMPM) and metachronous MPM (mMPM) were 83.1 and 196.7 months, respectively (p= 0.10). Median OS was not reached when melanoma was diagnosed first, and 153.5 months when diagnosed second (p= 0.45). For six patients receiving immunotherapy for melanoma, there was a 100% complete response rate. In conclusion, patients with melanoma are at risk of secondary malignancies, including breast and thyroid cancer. The timing of secondary malignancies may impact prognosis. Further study of the impact of immunotherapy on MPM is warranted.
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http://dx.doi.org/10.7759/cureus.15480DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8260217PMC
June 2021

Poor-Prognosis Metastatic Cancers in Adolescents and Young Adults: Incidence Patterns, Trends, and Disparities.

JNCI Cancer Spectr 2021 Jun 27;5(3):pkab039. Epub 2021 Apr 27.

Cancer and Blood Disease Institute, Children's Hospital Los Angeles, Los Angeles, CA, USA.

Background: For adolescents and young adults (AYAs, aged 15-39 years) with cancer, metastatic disease at diagnosis is the strongest predictor of mortality, but its associations with age and sociodemographic factors are largely unexplored.

Methods: Using Surveillance, Epidemiology, and End Results Program data from 2000 to 2016, we collected incident cases of poor-prognosis metastatic cancer (5-year survival < 50%) and compared the proportion, incidence, time trends, and incidence rate ratios for race and ethnicity, sex, and socioeconomic status among AYAs, middle-aged adults (aged 40-64 years) and older adults (aged 65-79 years).

Results: From 2000 to 2016, a total of 17 210 incident cases of poor-prognosis metastatic cancer were diagnosed in AYAs, 121 274 in middle-aged adults, and 364 228 in older adults. Compared with older patients, the proportion of AYAs having metastatic disease was equivalent or substantially lower in nearly every site except stomach and breast cancers, which were statistically significantly higher for AYAs compared with middle-aged and older adults (stomach: 57.3% vs 46.4% and 39.5%; breast: 6.6% vs 4.4% and 5.6%, respectively; 2-sided  < .001 for all comparisons). Incidence rates rose significantly faster among AYAs for breast, stomach, and kidney cancers and among AYAs and middle-aged adults for colorectal cancer. Markedly higher incidence rate ratios were noted for AYA racial and ethnic minorities with breast, stomach, and especially kidney cancer, where only non-Hispanic Black AYAs were at considerably higher risk. For most sites, incidence rate ratios were higher among male patients and individuals of low socioeconomic status across age groups.

Conclusions: For most cancers, AYAs are not more likely to present with metastases than middle-aged and older adults. Further investigation is warranted for the disproportionate rise in incidence of metastatic breast, stomach, and kidney cancer among AYAs and their excess burden among AYA racial and ethnic minorities. The rising incidence of colorectal cancer among AYAs and middle-aged adults remains an additional concern.
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http://dx.doi.org/10.1093/jncics/pkab039DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8266435PMC
June 2021

Patients, caregivers, and clinicians differ in performance status ratings: Implications for pediatric cancer clinical trials.

Cancer 2021 Oct 1;127(19):3664-3670. Epub 2021 Jul 1.

Children's Hospital Los Angeles, Los Angeles, California.

Background: The Lansky Play-Performance Scale (LPPS) is often used to determine a child's performance status for cancer clinical trial eligibility. Differences between clinician and caregiver LPPS ratings and their associations with child-reported functioning have not been evaluated.

Methods: Children aged 7 to 18 years who were receiving cancer treatment and their caregivers were recruited from 9 pediatric cancer centers. Caregivers and clinicians reported LPPS scores, and children completed Patient-Reported Outcomes Measurement Information System (PROMIS) pediatric functioning and symptom measures before treatment (time 1 [T1]) and after treatment (time 2 [T2]). t tests and mixed-linear models were used to assess differences in caregiver and clinician LPPS scores; polyserial correlations quantified associations between PROMIS and LPPS scores.

Results: Of 482 children, 281 had matched caregiver- and clinician-reported LPPS T1/T2 scores. Caregivers rated children significantly worse on the LPPS than clinicians at both T1 (mean, 73.3 vs 87.4; P < .01) and T2 (mean, 67.9 vs 83.1; P < .01). These differences were not related to a child's age (P = .89), diagnosis (P = .17), or sex (P = .64) or to the time point (P = .45). Small to moderate associations existed between caregiver- and clinician-reported LPPS ratings and child-reported PROMIS scores for mobility (caregiver T1/T2 r = 0.51/0.45; P < .01; clinician T1/T2 r = 0.40/0.35; P < .01), fatigue (caregiver T1/T2 r = -0.46/-0.37; P < .01; clinician T1/T2 r = -0.26/-0.27; P < .01), and pain interference (caregiver T1/T2 r = -0.32/-0.30; P < .01; clinician T1/T2 r = -0.17/-0.31; P < .01). Caregivers and clinicians assigned significantly lower LPPS scores at T2 (caregiver Δ = -5.37; P < .01; clinician Δ = -4.20; P < .01), whereas child-reported PROMIS scores were clinically stable.

Conclusions: Significant differences between clinician and caregiver LPPS ratings of child performance were sustained over time; their associations with child reports were predominantly small to moderate. These data suggest that clinician-reported LPPS ratings by themselves are inadequate for determining clinical trial eligibility and should be supplemented by appropriate measures of a child's functional status reflecting the child and caregiver perspectives.
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http://dx.doi.org/10.1002/cncr.33740DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8419065PMC
October 2021

Palliative care among adult cancer survivors: Knowledge, attitudes, and correlates.

Palliat Support Care 2021 Jun 22:1-6. Epub 2021 Jun 22.

Department of Preventive Medicine, Keck School of Medicine of the University of Southern California, Los Angeles, CA.

Objective: Palliative care (PC) is patient and family-centered supportive care intended to improve symptom management, reduce caregiver burden, coordinate care, and improve quality of life for patients diagnosed with serious illness. Optimally, PC is begun close to initial diagnosis and delivered in synchrony with disease-specific treatment until symptom relief or patient death. The purpose of this study was to examine cancer survivors' knowledge and perceptions of PC using a nationally representative sample of US adults from the Health Information National Trends Survey (HINTS).

Method: A total of 593 HINTS respondents reported a personal history of cancer and were included in the sample (55.56% female; mean age of 65.88 years, SD = 18.21; mean time from diagnosis 13.83 years, SD = 18.21). Weighted logistic regression models were conducted to identify correlates of PC knowledge.

Results: Of the 593 cancer survivors in the sample, 66% (N = 378) reported that they had never heard of PC, 18% (N = 112) reported knowing a little bit about PC, and 17% (N = 95) reported knowing what PC is and could explain it to someone else. In multivariable analysis, survivors of color (Hispanic/Latino, Black, Asian, American Indian, and Pacific Islander), males, and those less educated were significantly less likely to report knowledge of PC. Among survivors who did report knowledge of PC, a lack of distinction between differing modes of supportive care exists.

Significance Of Results: These findings suggest a need to increase PC knowledge among cancer survivors with the ultimate goal of addressing disparities in PC acceptance and utilization.
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http://dx.doi.org/10.1017/S1478951521000961DOI Listing
June 2021

Impacts of the SARS-CoV-2 Pandemic on Young Adult Colorectal Cancer Survivors.

J Adolesc Young Adult Oncol 2021 Jun 18. Epub 2021 Jun 18.

Division of Oncology, University of Southern California Norris Comprehensive Cancer Center, Los Angeles, California, USA.

The severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) pandemic has disrupted health care globally with dramatic impacts on cancer care delivery in addition to adverse economic and psychological effects. This study examined impacts of the SARS-CoV-2 pandemic on young adult colorectal cancer (CRC) survivors diagnosed age 18-39 years. Nearly 40% reported delays in cancer-related care, loss of income, and poorer mental health during the pandemic. Impacts were greater for survivors aged 20-29 years, with nearly 60% reporting cancer care delays and 53% experiencing income loss. Such impacts may result in detrimental downstream outcomes for young CRC survivors, requiring specific support, resources, and continued monitoring.
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http://dx.doi.org/10.1089/jayao.2021.0043DOI Listing
June 2021

Pediatric oncology clinician communication about sexual health with adolescents and young adults: A report from the children's oncology group.

Cancer Med 2021 Aug 15;10(15):5110-5119. Epub 2021 Jun 15.

Cancer and Blood Disease Institute, Children's Hospital Los Angeles, USC Norris Comprehensive Cancer Center, Los Angeles, CA, USA.

Background: Sexual health (SH) is an important concern for adolescents and young adults (AYAs). This study determined current SH communication practices, barriers, and additional resources needed among pediatric oncology clinicians who treat AYAs.

Methods: A cross-sectional survey was developed by the Children's Oncology Group (COG) AYA Committee and sent to pediatric oncologists (n = 1,987; 85.9%) and advanced practice providers (APPs, n = 326; 14.1%) at 226 COG institutions. Responses were tabulated and compared using tests of proportion and trend.

Results: The sample comprised 602 respondents from 168 institutions and was proportionally representative (468 oncologists [77.7%], 76 APPs [12.6%], 58 unidentified [9.6%]; institutional and provider response rates 74.3% and 26.2%, respectively). Almost half of respondents (41.7%) reported no/small role in SH care. Medical topics were discussed most often, including contraception (67.2%), puberty (43.5%), and sexual activity (37.5%). Topics never/rarely discussed included gender identity (64.5%), sexual orientation (53.7%), and sexual function (50.3%). Frequently cited communication barriers included lack of time, low priority, perceived patient discomfort, and the presence of a parent/guardian. Respondents endorsed the need for further education/resources on sexual function (66.1%), gender identity/sexual orientation (59.5%), and body image (46.6%). Preferred education modalities included dissemination of published guidelines (64.7%), skills training modules (62.9%), and webinars (45.3%). By provider type, responses were similar overall but differed for perception of role, barriers identified, and resources desired.

Conclusions: Many pediatric oncology clinicians play minimal roles in SH care of AYAs and most SH topics are rarely discussed. Provider-directed education/training interventions have potential for improving SH care of AYA cancer patients.
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http://dx.doi.org/10.1002/cam4.4077DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8335832PMC
August 2021

Barriers and Facilitators to Adolescent and Young Adult Cancer Trial Enrollment: NCORP Site Perspectives.

JNCI Cancer Spectr 2021 Jun 22;5(3):pkab027. Epub 2021 Mar 22.

Department of Pediatrics, Division of Pediatrics, The University of Texas MD Anderson Cancer Center, Houston, TX, USA.

Background: Although it is well documented that adolescents and young adults (AYAs) with cancer have low participation in cancer clinical trials (CCTs), the underlying reasons are not well understood. We used the National Cancer Institute Community Oncology Research Program (NCORP) network to identify barriers and facilitators to AYA CCT enrollment, and strategies to improve enrollment at community-based and minority and/or underserved sites.

Methods: We performed one-on-one semistructured qualitative interviews with stakeholders (NCORP site principle investigators, NCORP administrators, physicians involved in enrollment, lead clinical research associates or clinical research nurses, nurse navigators, regulatory research associates, patient advocates) in the AYA CCT enrollment process. NCORP sites that included high and low AYA-enrolling affiliate sites and were diverse in geography and department representation (eg, pediatrics, medical oncology) were invited to participate. All interviews were recorded and transcribed. Themes related to barriers and facilitators and strategies to improve enrollment were identified.

Results: We conducted 43 interviews across 10 NCORP sites. Eleven barriers and 13 facilitators to AYA enrollment were identified. Main barriers included perceived limited trial availability and eligibility, physician gatekeeping, lack of provider and research staff time, and financial constraints. Main facilitators and strategies to improve AYA enrollment included having a patient screening process, physician endorsement of trials, an "AYA champion" on site, and strong communication between medical and pediatric oncology.

Conclusions: Stakeholders identified several opportunities to address barriers contributing to low AYA CCT enrollment at community-based and minority and/or underserved sites. Results of this study will inform development and implementation of targeted interventions to increase AYA CCT enrollment.
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http://dx.doi.org/10.1093/jncics/pkab027DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8178801PMC
June 2021

Association of language proficiency, sociodemographics, and neurocognitive functioning in dual-language Latino survivors of childhood acute lymphoblastic leukemia and lymphoma.

Pediatr Blood Cancer 2021 Sep 21;68(9):e29118. Epub 2021 May 21.

Department of Pediatrics, Keck School of Medicine, University of Southern California, Los Angeles, California, USA.

Background: Survivors of childhood acute lymphoblastic leukemia and lymphoma (ALL/LL) are at risk for cognitive dysfunction, but little is known about its relationship with language proficiency and sociodemographics.

Procedure: In this cross-sectional cohort study of Latino survivors of childhood ALL/LL, English and Spanish language proficiency and cognitive and academic functioning were measured and their associations determined using paired t-tests, Pearson correlations, and linear regressions.

Results: Participants (N = 57; 50.9% female) had mean ages (years ± SD) of 4.3 ± 2.6 at diagnosis and 10.6 ± 2.9 at testing (range 6-16); mean time post treatment was 3.7 ± 2.6 years. The majority (73.7%) had low socioeconomic status (SES). Most (78.8%) were dual-language learners in English and Spanish. English proficiency was graded as limited-to-fluent and was significantly higher than Spanish (p < .001). Higher SES was correlated with higher English proficiency (r = 0.31, p = .020). Males had higher Spanish proficiency (r = -0.32, p = .034). Controlling for SES and sex, English proficiency accounted for 43% of cognitive functioning variance (F = 14.86, p < .001), 55% of reading comprehension variance (F = 22.14, p < .001), and 21% of mathematics variance (F = 5.76, p = .002).

Conclusions: Low language proficiency correlated with SES but was independently associated with lower cognitive and academic functioning. Research and surveillance for neurocognitive late effects in Latino ALL/LL survivors should incorporate measures of language proficiency and SES to account for their effects on cognitive and academic functioning.
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http://dx.doi.org/10.1002/pbc.29118DOI Listing
September 2021

Caloric and nutrient restriction to augment chemotherapy efficacy for acute lymphoblastic leukemia: the IDEAL trial.

Blood Adv 2021 04;5(7):1853-1861

Division of Pediatric Endocrinology, UCLA Children's Discovery and Innovation Institute, David Geffen School of Medicine, University of California Los Angeles (UCLA), Los Angeles, CA.

Being overweight or obese (OW/OB) during B-cell acute lymphoblastic leukemia (B-ALL) induction is associated with chemoresistance as quantified by minimal residual disease (MRD). We hypothesized that caloric and nutrient restriction from diet/exercise could lessen gains in fat mass (FM) and reduce postinduction MRD. The Improving Diet and Exercise in ALL (IDEAL) trial enrolled patients 10 to 21 years old, newly diagnosed with B-ALL (n = 40), in comparison with a recent historical control (n = 80). Designed to achieve caloric deficits ≥20% during induction, reduce fat intake/glycemic load, and increase activity, IDEAL's end points were FM gain (primary), MRD ≥0.01%, and adherence/feasibility. Integrated biology explored biomarkers of OW/OB physiology. IDEAL intervention did not significantly reduce median FM change from baseline overall (+5.1% [interquartile range [IQR], 15.8] vs +10.7% [IQR, 16.0]; P = .13), but stratified analysis showed benefit in those OW/OB (+1.5% [IQR, 6.6] vs +9.7% [IQR, 11.1]; P = .02). After accounting for prognostic factors, IDEAL intervention significantly reduced MRD risk (odds ratio, 0.30; 95% confidence interval, 0.09-0.92; P = .02). The trial exceeded its adherence (≥75% of overall diet) and feasibility (≥80% completed visits) thresholds. Integrated biology found the IDEAL intervention increased circulating adiponectin and reduced insulin resistance. The IDEAL intervention was feasible, decreased fat gain in those OW/OB, and reduced MRD. This is the first study in any hematologic malignancy to demonstrate potential benefit from caloric restriction via diet/exercise to augment chemotherapy efficacy and improve disease response. A prospective, randomized trial is warranted for validation. These trials were registered at www.clinicaltrials.gov as #NCT02708108 (IDEAL trial) and #NCT01317940 (historical control).
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http://dx.doi.org/10.1182/bloodadvances.2020004018DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8045487PMC
April 2021

Validation of the caregiver Pediatric Patient-Reported Outcomes Version of the Common Terminology Criteria for Adverse Events measure.

Cancer 2021 May 17;127(9):1483-1494. Epub 2020 Dec 17.

Children's National Hospital, Washington, DC.

Background: Despite improvements in survival rates, cancer treatments have significant side effects that affect the quality of life of children and their families. When an ill child cannot self-report symptoms (eg, he or she is too ill), caregiver (parent) reporting becomes critical. This study evaluates the validity and reliability of the caregiver-reported Pediatric Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (Ped-PRO-CTCAE [Caregiver]) measure.

Methods: A diverse sample of caregivers with children receiving treatment at 9 oncology centers completed the Ped-PRO-CTCAE [Caregiver] measure, the Patient-Reported Outcomes Measurement Information System (PROMIS ) Parent Proxy measures, the Lansky Play-Performance Scale (PPS), medication use questions, and Global Impressions of Change (GIC). Construct validity (including convergent, discriminant, and known groups validity and responsiveness over time) and reliability (stability) were examined.

Results: A majority of the 473 caregivers were female (85%), non-Hispanic White (61%), and married (75%). Symptoms assessed with the Ped-PRO-CTCAE [Caregiver] and PROMIS Parent Proxy measures were strongly correlated (e.g., r for pain = 0.78; r for fatigue = 0.78; and r for depression = 0.83). Most of the Ped-PRO-CTCAE [Caregiver] item mean scores distinguished among PPS function levels and between children who did take medications for symptom control and children who did not. Changes in Ped-PRO-CTCAE [Caregiver] item mean scores were responsive to GIC over time. Test-retest evaluation found moderate to high agreement (57.8%-93.3%) over time.

Conclusions: This study found strong evidence for the convergent and discriminant validity, known groups validity, responsiveness, and stability of the Ped-PRO-CTCAE [Caregiver] measure in a large and diverse sample of caregivers. The caregiver perspective provides a valuable and unique insight into the experiences of children and adolescents undergoing cancer treatment.

Lay Summary: Despite advances in cancer treatments, children and adolescents continue to suffer from treatment side effects, including pain, nausea, fatigue, and emotional distress, that can adversely affect quality of life for children and their families. Although it is best for children to report how they are feeling, there are times when a child may be too young or too ill to self-report. This study provides critical evidence for a new type of questionnaire that allows the caregiver or parent to report accurately what the child is experiencing. This measure can be used to improve adverse event reporting and child cancer care.
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http://dx.doi.org/10.1002/cncr.33389DOI Listing
May 2021

Surveillance for radiation-related late effects in childhood cancer survivors: The impact of using volumetric dosimetry.

Cancer Med 2021 02 16;10(3):905-913. Epub 2020 Dec 16.

Cancer and Blood Disease Institute, Children's Hospital Los Angeles, Los Angeles, CA, USA.

Background: Radiation-related screening guidelines for survivors of childhood cancer currently use irradiated regions (IR) to determine risk for late effects. However, contemporary radiotherapy techniques utilize volumetric dosimetry (VD) to determine organ-specific exposures, which could inform need for late effect surveillance.

Methods: This cross-sectional cohort study involved patients treated for cancer using computerized tomography-planned irradiation at Children's Hospital Los Angeles from 2000-2016. Organs at risk were identified using both VD and IR. Under each method, Children's Oncology Group Long-Term Follow-Up Guidelines were applied to determine radiation-related potential late effects and their correlative recommended screening practices. Patients served as their own controls. Mean number of potential late effects per patient and recommended screening practices per patient per decade of follow-up were compared using paired t-tests; comparisons were adjusted for diagnosis and gender using random effects, repeated measure linear regression.

Results: In this cohort (n = 132), median age at 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%). Under IR and VD, the mean number of potential late effects flagged was 24.4 and 21.7, respectively (-11.3%, p < 0.001); concordance between the two methods was 6.1%. Under VD, the difference in mean number of recommended screening practices per patient was -7.4% in aggregate but as large as -37.0% for diagnostic imaging and procedures (p < 0.001 for both).

Conclusion: Use of VD rather than IR is feasible and enhances precision of guideline-based screening for radiation-related late effects in long-term childhood cancer survivors.
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http://dx.doi.org/10.1002/cam4.3671DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7897961PMC
February 2021

Sexual health among adolescent and young adult cancer survivors: A scoping review from the Children's Oncology Group Adolescent and Young Adult Oncology Discipline Committee.

CA Cancer J Clin 2021 05 7;71(3):250-263. Epub 2020 Dec 7.

Department of Obstetrics and Gynecology, Grossman School of Medicine, New York University, New York, New York.

Sexual function is a vital aspect of quality of life among adolescent and young adult (AYA) (ages 15-39 years) cancer survivors. Sexual function encompasses physical, psychosocial, and developmental factors that contribute to sexual health, all of which may be negatively impacted by cancer and treatment. However, limited information is available to inform the care of AYA cancer survivors in this regard. This scoping review, conducted by the Children's Oncology Group AYA Oncology Discipline Committee, summarizes available literature regarding sexual function among AYA cancer survivors, including relevant psychosexual aspects of romantic relationships and body image. Results suggest that, overall, AYA cancer survivors experience a substantial burden of sexual dysfunction. Both physical and psychosocial sequelae influence survivors' sexual health. Interventions to support sexual health and psychosexual adjustment after cancer treatment are needed. Collaborations between the Children's Oncology Group and adult-focused cooperative groups within the National Cancer Institute's National Clinical Trials Network are warranted to advance prospective assessment of sexual dysfunction and test interventions to improve sexual health among AYA cancer survivors.
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http://dx.doi.org/10.3322/caac.21655DOI Listing
May 2021

Identifying metrics of success for transitional care practices in childhood cancer survivorship: a qualitative interview study of survivors.

BMC Cancer 2020 Sep 21;20(1):898. Epub 2020 Sep 21.

Division of Health Policy and Management, University of Minnesota School of Public Health, 420 Delware St. SE, MMC729, Minneapolis, MN, 55455, USA.

Background: Adolescent and young adult (AYA) childhood cancer survivors (CCS) should be empowered to continue their survivor-focused care as they transition into adult medicine. However, the majority of AYA-aged survivors become lost to follow up around the age of typical transition to adulthood. The purpose of this study was to identify, from the patient's perspective, key factors that facilitate successful transitions to adult-centered survivorship care.

Methods: A qualitative study was conducted with AYA CCS (n = 29) from the survivorship clinic of a single institution as key informants. Data were collected through a series of structured phone interviews and subjected to thematic content analysis.

Results: Four major themes with multiple subthemes were identified: (1) transition practices need to be flexible and individually tailored; (2) effective communication is critical to a successful transition; (3) continuity in providers is needed during the transition; and (4) comprehensive care means care that also addresses psycho-social well-being.

Conclusions: From the perspective of AYA CCS, the ideal model of transitional survivorship care could include a patient navigator who promotes provider flexibility, consistent communication, and pro-active comprehensive care that encompasses both medical and psycho-social well-being. Models of care for CCS should be built to provide, or seamlessly facilitate, continuous survivor-focused care across the age continuum. A longitudinal relationship with a survivor-focused provider can help promote the values that CCS' report as important in transitioning care from pediatric- to adult-centered care.
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http://dx.doi.org/10.1186/s12885-020-07360-9DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7507711PMC
September 2020

Assessment of provider perspectives on otoprotection research for children and adolescents: A Children's Oncology Group Cancer Control and Supportive Care Committee survey.

Pediatr Blood Cancer 2020 11 4;67(11):e28647. Epub 2020 Sep 4.

Vanderbilt University Ingram Cancer Center, Nashville, Tennessee.

Background: Cisplatin-induced hearing loss (CIHL) is a common and debilitating toxicity for childhood cancer survivors. Understanding provider perspectives is crucial to developing otoprotection studies that are both informative and feasible. Two international trials (ACCL0431 and SIOPEL6) investigated the drug sodium thiosulfate (STS) as an otoprotectant, but definitive interpretation of the findings of these trials has been challenging. Adoption of STS has therefore been uneven, and provider perspectives on its role are unknown.

Procedure: The Children's Oncology Group (COG) Cancer Control and Supportive Care Neurotoxicity Subcommittee therefore conducted a survey of providers at COG institutions to determine perspectives on pediatric otoprotection practices and research surrounding three major themes: (1) prevalence of routine use of STS with cisplatin-based regimens, (2) application of audiometry to cisplatin therapy, and (3) preferred modalities for otoprotection research.

Results: Survey respondents (45%, 44/98 surveyed institutions) were of diverse institutional sizes, practice settings, and geographical locations primarily in the United States and Canada. Overall, respondents considered CIHL an important toxicity and indicated strong enthusiasm for future studies (98%, 40/41). Results indicated that while STS was the current or planned standard of care in a minority of responding institutions (36%, 16/44), most sites were receptive to its inclusion in appropriate study designs. Application of audiometry for ototoxicity monitoring varied widely across sites. For otoprotection research, systemic agents were preferred (68%, 28/41) as compared with intratympanic approaches.

Conclusion: These results suggest that pediatric otoprotection trials remain of interest to providers; the emphasis of these trials should remain on systemic and not intratympanic therapy.
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http://dx.doi.org/10.1002/pbc.28647DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7808411PMC
November 2020

Estimating cancer treatment intensity from SEER cancer registry data: methods and implications for population-based registry studies of pediatric cancers.

Cancer Causes Control 2020 Oct 5;31(10):881-890. Epub 2020 Aug 5.

Department of Preventive Medicine, Keck School of Medicine, University of Southern California, Los Angeles, CA, USA.

Objective: The Intensity of Treatment Rating (ITR) Scale condenses treatment and clinical characteristics into a single measure to study treatment effects on downstream health outcomes across cancer types. This rating was originally developed for clinicians to determine from medical charts. However, large studies are often unable to access medical charts for all study participants. We developed and tested a method of estimating treatment intensity (TI) using cancer registry and patient self-reported data.

Methods: We estimated two versions of TI for a cohort of pediatric cancer survivors-one utilized information solely available from cancer registry variables (TI) and the other included registry and self-reported information (TI) from survey participants. In a subset of cases (n = 135) for whom the gold standard TI (TI) was known, both TI and TI were compared to TI by calculating percent agreement and weighted Cohen's kappa, overall and within cancer subtypes.

Results: In comparison to TI, 71% of TI scores from both methods were in agreement (k = 0.61 TI/0.54 TI). Among subgroups, agreement ranged from lowest (46% TI/39% TI) for non-defined tumors (e.g., "Tumor-other"), to highest (94% TI/94% TI) for acute lymphoblastic leukemia (ALL).

Conclusions: We developed a methodology to estimate TI for pediatric cancer research when medical chart review is not possible. High reliability was observed for ALL, the most common pediatric cancer. Additional validation is needed among a larger sample of other cancer subgroups. The ability to estimate TI from cancer registry data would assist with monitoring effects of treatment during survivorship in registry-based epidemiological studies.
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http://dx.doi.org/10.1007/s10552-020-01328-7DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7537342PMC
October 2020

Profiles of emotional distress and growth among adolescents and young adults with cancer: A longitudinal study.

Health Psychol 2020 May 23;39(5):370-380. Epub 2020 Mar 23.

School of Medicine.

Objective: This study investigated profiles of emotional distress and growth in adolescents and young adults (AYAs) with cancer. Clinical, demographic, and psychosocial factors were examined for their potential to distinguish these profiles and predict health-related quality of life (HRQoL) of AYAs with cancer.

Method: This was a multicenter, longitudinal study of AYAs diagnosed with cancer at 14-39 years of age. Participants were assessed 3 times over 24 months following a baseline survey administered at diagnosis. Four profiles (resilient, resilient growth, distressed, distressed growth) were derived using published cutoff points on standardized measures of depression, anxiety, posttraumatic stress disorder, and posttraumatic growth. Mixed-effects models were used to examine profile correlates and the extent to which profiles were associated with HRQoL.

Results: Among 179 participants at Time 1, the proportion of profiles ranged from 18.8% for the resilient profile to 30.4% for the distressed-growth profile. These proportions remained consistent over time. Factors that appeared to distinguish these profiles included work or school status, sex, race, age at diagnosis, treatment status, prognosis, and personality characteristics. When compared to AYAs with resilient-growth profiles, HRQoL was significantly worse for AYAs reporting distressed and distressed-growth profiles, controlling for demographic, clinical, and social characteristics.

Conclusion: The current study found 4 patterns of psychological adjustment in AYAs with cancer. The resilient-growth profile was associated with better HRQoL, whereas distressed and distressed-growth profiles were associated with worse HRQoL. (PsycInfo Database Record (c) 2020 APA, all rights reserved).
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http://dx.doi.org/10.1037/hea0000843DOI Listing
May 2020

The Children's Oncology Group Adolescent and Young Adult Responsible Investigator Network: A New Model for Addressing Site-Level Factors Impacting Clinical Trial Enrollment.

J Adolesc Young Adult Oncol 2020 08 20;9(4):522-527. Epub 2020 Feb 20.

Cancer and Blood Diseases Institute, Children's Hospital Los Angeles, Los Angeles, California, USA.

In the Children's Oncology Group (COG), there is precedent for scientific committees designating institutional Responsible Investigators (RIs) to promote clinical trial enrollment and coordinate related research activities. In response to low enrollment of adolescents and young adults (AYAs) on COG clinical trials, the COG AYA RI Network was established. Leveraging this network, we undertook an initiative to identify site-level factors influencing AYA enrollment. The overarching goal of the AYA RI Network is to increase AYA enrollment onto COG trials. At each site, RIs highlight AYA disparities, facilitate activation of relevant trials, improve recruitment processes, and expand interactions with medical oncologists. Through a series of monthly national webinars and workshops, participating RIs reported local barriers and facilitators enrolling AYAs. A mixed-methods approach was utilized to determine major themes of factors affecting site-level enrollment. For this report, there were 145 participating RIs representing 122 demographically and geographically diverse sites. There were 13 interactive webinars and 3 symposia involving 25 speakers focused on addressing enrollment barriers. Major thematic categories for site-level barriers were (1) Lack of available trials; (2) Poor communication between pediatric and medical oncology; (3) Logistical constraints to accessing trials; and (4) Need for leadership support, sufficient resources and appropriate policies. The COG AYA RI Network has identified multiple site-level barriers impeding AYA clinical trial enrollment and represents a novel model for developing and implementing appropriate solutions through a nationally coordinated strategy.
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http://dx.doi.org/10.1089/jayao.2019.0139DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7415882PMC
August 2020

Late mortality and chronic health conditions in long-term survivors of early-adolescent and young adult cancers: a retrospective cohort analysis from the Childhood Cancer Survivor Study.

Lancet Oncol 2020 03 14;21(3):421-435. Epub 2020 Feb 14.

Department of Pediatrics, University of Chicago, Chicago, IL, USA. Electronic address:

Background: Treatment outcomes among survivors of cancer diagnosed during adolescence and early young adulthood have not been characterised independently of survivors of cancers diagnosed during childhood. We aimed to describe chronic health conditions and all-cause and cause-specific mortality among survivors of early-adolescent and young adult cancer.

Methods: The Childhood Cancer Survivor Study (CCSS) is a retrospective cohort study with longitudinal follow-up of 5-year survivors diagnosed with cancer before the age of 21 years at 27 academic institutions in the USA and Canada between 1970 and 1999. We evaluated outcomes among survivors of early-adolescent and young adult cancer (aged 15-20 years at diagnosis) and survivors diagnosed at age younger than 15 years (matched on primary cancer diagnosis, including leukaemia, lymphoma, CNS tumours, neuroblastoma, Wilms tumour, soft-tissue sarcomas, and bone cancer) by comparing both groups to siblings of the same age. Mortality was ascertained with the National Death Index. Chronic health conditions were classified with the Common Terminology Criteria for Adverse Events. Standardised mortality ratios (SMRs) were estimated with age-specific, sex-specific, and calendar year-specific US rates. Cox proportional hazard models estimated hazard ratios (HRs) for chronic health conditions and 95% CIs.

Findings: Among 5804 early-adolescent and young adult survivors (median age 42 years, IQR 34-50) the SMR compared to the general population for all-cause mortality was 5·9 (95% CI 5·5-6·2) and among 5804 childhood cancer survivors (median age 34 years; 27-42), it was 6·2 (5·8-6·6). Early-adolescent and young adult survivors had lower SMRs for death from health-related causes (ie, conditions that exclude recurrence or progression of the primary cancer and external causes, but include the late effects of cancer therapy) than did childhood cancer survivors (SMR 4·8 [95% CI 4·4-5·1] vs 6·8 [6·2-7·4]), which was primarily evident more than 20 years after cancer diagnosis. Early-adolescent and young adult cancer survivors and childhood cancer survivors were both at greater risk of developing severe and disabling, life-threatening, or fatal (grade 3-5) health conditions than siblings of the same age (HR 4·2 [95% CI 3·7-4·8] for early adolescent and young adult cancer survivors and 5·6 [4·9-6·3] for childhood cancer survivors), and at increased risk of developing grade 3-5 cardiac (4·3 [3·5-5·4] and 5·6 [4·5-7·1]), endocrine (3·9 [2·9-5·1] and 6·4 [5·1-8·0]), and musculoskeletal conditions (6·5 [3·9-11·1] and 8·0 [4·6-14·0]) when compared with siblings of the same age, although all these risks were lower for early-adolescent and young adult survivors than for childhood cancer survivors.

Interpretation: Early-adolescent and young adult cancer survivors had higher risks of mortality and severe and life threatening chronic health conditions than the general population. However, early-adolescent and young adult cancer survivors had lower non-recurrent, health-related SMRs and relative risks of developing grade 3-5 chronic health conditions than childhood cancer survivors, by comparison with siblings of the same age, which were most notable more than 20 years after their original cancer. These results highlight the need for long-term screening of both childhood and early-adolescent and young adult cancer survivors.

Funding: National Cancer Institute and American Lebanese-Syrian Associated Charities.
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http://dx.doi.org/10.1016/S1470-2045(19)30800-9DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7392388PMC
March 2020

Enrollment of adolescents and young adults onto SWOG cancer research network clinical trials: A comparative analysis by treatment site and era.

Cancer Med 2020 03 3;9(6):2146-2152. Epub 2020 Feb 3.

Departments of Pediatrics and Medicine, Cancer and Blood Diseases Institute, Children's Hospital Los Angeles, USC Norris Comprehensive Cancer Center, Keck School of Medicine, University of Southern California, Los Angeles, CA, USA.

Background: Few adolescents and young adults (AYAs, 15-39 years old) enroll onto cancer clinical trials, which hinders research otherwise having the potential to improve outcomes in this unique population. Prior studies have reported that AYAs are more likely to receive cancer care in community settings. The National Cancer Institute (NCI) has led efforts to increase trial enrollment through its network of NCI-designated cancer centers (NCICC) combined with community outreach through its Community Clinical Oncology Program (CCOP; replaced by the NCI Community Oncology Research Program in 2014).

Methods: Using AYA proportional enrollment (the proportion of total enrollments who were AYAs) as the primary outcome, we examined enrollment of AYAs onto SWOG therapeutic trials at NCICC, CCOP, and non-NCICC/non-CCOP sites from 2004 to 2013 by type of site, study period (2004-08 vs 2009-13), and patient demographics.

Results: Overall, AYA proportional enrollment was 10.1%. AYA proportional enrollment decreased between 2004-2008 and 2009-2013 (13.1% vs 8.5%, P < .001), and was higher at NCICCs than at CCOPs and non-NCICC/non-CCOPs (14.1% vs 8.3% and 9.2%, respectively; P < .001). AYA proportional enrollment declined significantly at all three site types. Proportional enrollment of AYAs who were Black or Hispanic was significantly higher at NCICCs compared with CCOPs or non-NCICC/non-CCOPs (11.5% vs 8.8, P = .048 and 11.5% vs 8.6%, P = .03, respectively).

Conclusion: Not only did community sites enroll a lower proportion of AYAs onto cancer clinical trials, but AYA enrollment decreased in all study settings. Initiatives aimed at increasing AYA enrollment, particularly in the community setting with attention to minority status, are needed.
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http://dx.doi.org/10.1002/cam4.2891DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7064039PMC
March 2020

Validity and Reliability of the Pediatric Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events.

J Natl Cancer Inst 2020 11;112(11):1143-1152

Children's National Hospital, 111 Michigan Ave., N.W., Washington, DC 20010, USA.

Background: Patient-reported outcome (PRO) measurements linked to Common Terminology Criteria for Adverse Events (CTCAE) grading may improve symptom adverse event (AE) reporting in pediatric oncology trials. We evaluated construct validity, responsiveness, and test-retest reliability of the Ped-PRO-CTCAE measurement system for children and adolescents undergoing cancer care.

Methods: A total of 482 children and adolescents (7-18 years, 41.5% not non-Hispanic white) newly diagnosed with cancer and their caregivers participated from nine pediatric oncology hospitals. Surveys were completed at 72 hours preceding treatment initiation (T1) and at follow-up (T2) approximately 7-17 days later for chemotherapy, and 4+ weeks for radiation. Psychometric analyses examined the relationship of Ped-PRO-CTCAE items (assessing 62 symptom AEs) with Patient-Reported Outcomes Measurement Information System, Memorial Symptom Assessment Scale, Lansky Play-Performance Scale, and medication use. A separate test-retest study included 46 children.

Results: Ped-PRO-CTCAE and Memorial Symptom Assessment Scale were strongly correlated across age groups at T2: 7-12 years (r = 0.62-0.80), 13-15 years (r = 0.44-0.94), and 16-18 years (r = 0.65-0.98); and over time. The Ped-PRO-CTCAE was strongly correlated with Patient-Reported Outcomes Measurement Information System Pediatric measures at T2; for example, pain interference (r = 0.70, 95% confidence interval [CI] = 0.64 to 0.76), fatigue severity (r = 0.63, 95% CI = 0.56 to 0.69), and depression severity (r = 0.76, 95% CI = 0.71 to 0.81). Ped-PRO-CTCAE items differentiated children by Lansky Play-Performance Scale and by medication use. Test-retest agreement ranged from 54.3% to 93.5%.

Conclusions: This longitudinal study provided evidence for the construct validity and reliability of the core Ped-PRO-CTCAE symptom AE items relative to several established measures. Additional responsiveness data with clinical anchors are recommended. Incorporation of Ped-PRO-CTCAE in trials may lead to a better understanding of the cancer treatment experience.
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http://dx.doi.org/10.1093/jnci/djaa016DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7669229PMC
November 2020

Systematic review of barriers and facilitators to clinical trial enrollment among adolescents and young adults with cancer: Identifying opportunities for intervention.

Cancer 2020 03 23;126(5):949-957. Epub 2019 Dec 23.

Department of Pediatrics, Division of Pediatrics, The University of Texas MD Anderson Cancer Center, Houston, Texas.

Adolescents and young adults (AYAs) are underrepresented in cancer clinical trials (CCTs). Limited trial enrollment slows progress in improving survival rates and prevents the collection of valuable biospecimens. A systematic literature review was conducted to assess barriers and facilitators to AYA enrollment in CCTs and to identify opportunities to improve enrollment. The PubMed MEDLINE, Web of Science, Scopus, and PsycINFO databases were searched to identify studies relevant to AYA CCT enrollment. Eligibility criteria included the qualitative and/or quantitative evaluation of barriers and facilitators to AYA enrollment. One hundred fifty-five unique publications were identified; 13 were included in the final analysis. Barriers to AYA enrollment in CCTs included a lack of existing trials applicable to the patient population, limited access to available CCTs, and a lack of physician awareness of relevant trials. Facilitators of enrollment included optimizing the research infrastructure, improving the awareness of available CCTs among providers, and enhancing communication about CCTs between providers and patients. In conclusion, the limited available research reports institution- and patient-level barriers and facilitators to AYA CCT enrollment. Because of persistent disparities in AYA enrollment, there is an urgent need to further identify the barriers and facilitators to AYA CCT enrollment to determine actionable areas for intervention.
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http://dx.doi.org/10.1002/cncr.32675DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7029803PMC
March 2020

Prevention of cisplatin-induced ototoxicity in children and adolescents with cancer: a clinical practice guideline.

Lancet Child Adolesc Health 2020 02 19;4(2):141-150. Epub 2019 Dec 19.

Child Health Evaluative Sciences, Research Institute, The Hospital for Sick Children, Toronto, ON, Canada; Division of Haematology and Oncology, The Hospital for Sick Children, Toronto, ON, Canada. Electronic address:

Despite ototoxicity being a prevalent consequence of cisplatin chemotherapy, little guidance exists on interventions to prevent this permanent and progressive adverse event. To develop a clinical practice guideline for the prevention of cisplatin-induced ototoxicity in children and adolescents with cancer, we convened an international, multidisciplinary panel of experts and patient advocates to update a systematic review of randomised trials for the prevention of cisplatin-induced ototoxicity. The systematic review identified 27 eligible adult and paediatric trials that evaluated amifostine, sodium diethyldithiocarbamate or disulfiram, systemic sodium thiosulfate, intratympanic therapies, and cisplatin infusion duration. Regarding systemic sodium thiosulfate, the panel made a strong recommendation for administration in non-metastatic hepatoblastoma, a weak recommendation for administration in other non-metastatic cancers, and a weak recommendation against its routine use in metastatic cancers. Amifostine, sodium diethyldithiocarbamate, and intratympanic therapy should not be routinely used. Cisplatin infusion duration should not be altered as a means to reduce ototoxicity. Further research to determine the safety of sodium thiosulfate in patients with metastatic cancer is encouraged.
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http://dx.doi.org/10.1016/S2352-4642(19)30336-0DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7521149PMC
February 2020
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